Re: gotta exhale

[Guest guest]

Connie, how long have you had this much pain? I know you've probably already told us, but bear with me--have you tried other drugs besides Lyrica? My best relief was from Neurontin & Cymbalta, but I had to quit the Neurontin when I had an odd little spell while driving & ended up breaking a telephone pole. Then I used just Cymbalta, but it didn't do enough, so we added Lyrica. That combo was almost as good as the Neurontin & Cymbalta. But then my dry eyes started getting much drier, and after some experimentation I realized that it was the Cymbalta, so I had to stop it. As bad as my feet hurt, the eyes were worse; like someone rubbing sandpaper in them. I only take 150 of Lyrica twice a day; I'm holding off on any increase as long as possible. I've told you about elevating the feet & having a little wire tent to hold the covers off. Some nights I have to put my feet up even higher; I'll either stack up pillows, or lie on the floor with my feet up on a chair, up higher than my head. That will help for awhile. I can't sleep on the floor, because the critters will want to kiss me too much, but it gives a little temporary relief. Another thing that sounds awful, but has actually helped me is capsaicin cream. it's made from hot peppers & it burns like the dickens when you apply it, but after a couple of days it does seem to help. It's also used for arthritis. This last time I bought a roll-on tube, because it's impossible to wash it off your hands & I didn't want to use new gloves every day. I hope that one of these suggestions helps, because I know how awful that pain is. That tells you how bad my leg/back pain are; it actually takes my mind off the neuropathic pain.

Connie, you are probably already familiar with the American Chronic Pain Association. If not, here is their link: www.theacpa.org

Under conditions A-Z you can find neuropathic pain, then on the right of that page are some coping suggestions. I've been thinking about doing the online pain log. I think I know what triggers worse episodes, but it would be interesting to actually track it & see if I'm aware of all the triggers. If nothing else, it may take our minds off the actual pain for awhile by keeping a chart! Well, I'm going to knock off here in a couple of minutes & get in my hot tub. My feet & leg are hurting more than usual, I think because I drove my son to work (2-hour round trip). I sincerely hope that you are able to get some relief, somehow. If you don't mind, I'll say some prayers for you. I really enjoyed the chat tonight; did that help take your mind off the pain for a bit?

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 27 May 2011 18:45:29 -0700Subject: gotta exhale

My neuropathy is hurting so bad I am having chest pain, and I'm getting nauseous. I feel like my feet are being burned, razorblade cut, and pulled apart all at once, then the muscle cramps start. The Lyrica side effects are too much to increase the dose anymore and still function at my job. I am not the type to sit and cry, but this has been this bad for way to long. I'm exhausted from lack of sleep, the pain won't let up, and the stabbing is so startling it has got my heart totally aggravated. My speech, and my memory has left for the holiday. I only have one claw left holding on the knot in the end of my rope. Thanks for listening I had to vent in writing, or scream at the time of my lungs; which the neighbors would take issue with. I appreciate you all.......connie

[Guest guest]

Thanks so much Rose, and I am always thankful for any prayers said on my behalf. I have stuck pretty much with the lyrica because of a couple of different things, side effects and trouble finding medicine I can actually take. Because of the chloroquine I can't mix some meds, I'm allergic to capsaisin, methotrexate, and immuran. I haven't tried Neurotin yet because of the dental problems it causes. Remicaid is off the table because of my heart. I can elevate my legs in bed, but I can't lay on the floor, I can't get up. I will look up the chronic pain sight, it sounds like a good idea, I didn't know there was a sight like that, thank you. One thing that is upping the game is the CIDP, it is getting worse and tearing me up, my heart has felt like

it was trying to crawl out of my chest today, and the GammaGard IVIG doesn't seem to be lasting but about 2.5/3 weeks. I do the IVIG once a month.

I did enjoy the chat and it did help to escape for a little while till the Lyrica could kick in a little. I will see my pulmonologist and my neurologist the first week of june. I don't know what we are going to do. Getting rid of the bad side effects of higher pred was good and I'm not sorry I did it, but I'm finding out I opened Pandora's box. The sarc Minions are having a field day and chewing me up, I seriously don't know what to do. I use to have good days pain wise, I haven't in a long time, it's been like a steady downhill trip, I can't seem to find the top anymore. But hey, I shouldn't gripe, I don't have ALS, or some of the other horrible things some of my clients do.

Thanks for listening, and letting me vent; I couldn't have taken much more without letting some of it out. Always remember you are appreciated.

To: neurosarcoidosis Sent: Sat, May 28, 2011 12:25:05 AMSubject: RE: gotta exhale

Connie, how long have you had this much pain? I know you've probably already told us, but bear with me--have you tried other drugs besides Lyrica? My best relief was from Neurontin & Cymbalta, but I had to quit the Neurontin when I had an odd little spell while driving & ended up breaking a telephone pole. Then I used just Cymbalta, but it didn't do enough, so we added Lyrica. That combo was almost as good as the Neurontin & Cymbalta. But then my dry eyes started getting much drier, and after some experimentation I realized that it was the Cymbalta, so I had to stop it. As bad as my feet hurt, the eyes were worse; like someone rubbing sandpaper in them. I only take 150 of Lyrica twice a day; I'm holding off on any increase as long as possible. I've told you about elevating the feet & having a little wire tent to hold the covers off. Some nights I have to put my feet up even higher;

I'll either stack up pillows, or lie on the floor with my feet up on a chair, up higher than my head. That will help for awhile. I can't sleep on the floor, because the critters will want to kiss me too much, but it gives a little temporary relief. Another thing that sounds awful, but has actually helped me is capsaicin cream. it's made from hot peppers & it burns like the dickens when you apply it, but after a couple of days it does seem to help. It's also used for arthritis. This last time I bought a roll-on tube, because it's impossible to wash it off your hands & I didn't want to use new gloves every day. I hope that one of these suggestions helps, because I know how awful that pain is. That tells you how bad my leg/back pain are; it actually takes my mind off the neuropathic pain.Connie, you are probably already familiar with the American Chronic Pain Association. If not, here is

their link: www.theacpa.orgUnder conditions A-Z you can find neuropathic pain, then on the right of that page are some coping suggestions. I've been thinking about doing the online pain log. I think I know what triggers worse episodes, but it would be interesting to actually track it & see if I'm aware of all the triggers. If nothing else, it may take our minds off the actual pain for awhile by keeping a chart! Well, I'm going to knock off here in a couple of minutes & get in my hot tub. My feet & leg are hurting more than usual, I think because I drove my son to work (2-hour round trip). I sincerely hope that you are able to get some relief, somehow. If you don't mind, I'll say some prayers for you. I really enjoyed the chat tonight; did that help take your mind off the pain for a bit?

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 27 May 2011 18:45:29 -0700Subject: gotta exhale

My neuropathy is hurting so bad I am having chest pain, and I'm getting nauseous. I feel like my feet are being burned, razorblade cut, and pulled apart all at once, then the muscle cramps start. The Lyrica side effects are too much to increase the dose anymore and still function at my job. I am not the type to sit and cry, but this has been this bad for way to long. I'm exhausted from lack of sleep, the pain won't let up, and the stabbing is so startling it has got my heart totally aggravated. My speech, and my memory has left for the holiday. I only have one claw left holding on the knot in the end of my rope. Thanks for listening I had to vent in writing, or scream at the time of my lungs; which the neighbors would take issue with. I appreciate you all.......connie

[Guest guest]

Connie, do you have access to a hot tub, or a deep bathtub? That often helps me more than the drugs. I can't use a regular bathtub anymore (can't get out without a couple of Marines to haul me up!). A shower doesn't do the trip. I have to let my legs go out in front of me. Right now I'm keeping the temp at 98-99 because my pregnant granddaughter is using the hot tub. That's actually warm enough for me now that the weather is warming up. I just sit in one of the corners with the jets to my back, hips & shoulders, with my legs out in front, sometimes I rest my knees on one of those foam noodles. I do some mile resistance exercises for my arms with sort foam pieces, then do some milk leg exercises. 10-15 min. does wonders for my feet. I either have a couple of rice sox warming in the microwave or a fleece blanket & sox warming in the dryer. Get out of that hot tob, dry off, get pj's on, hop in bed with my warm blanket, sox, and/or rice sox. If you don't have a hot tub, dry a regular tub if you are able to get out without any trouble. Make sure you have everything all ready, so that you don't get out of the tub, then have to walk/stand around for 30 min. before going to bed. It takes away most of the relief from the warm water. Now my son gave me one of those water foot massagers a few years ago. It was okay, but the vibration was uncomfortable, plus my feet were dependent, so it didn't really do the job.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 28 May 2011 22:22:57 -0700Subject: Re: gotta exhale

Thanks so much Rose, and I am always thankful for any prayers said on my behalf. I have stuck pretty much with the lyrica because of a couple of different things, side effects and trouble finding medicine I can actually take. Because of the chloroquine I can't mix some meds, I'm allergic to capsaisin, methotrexate, and immuran. I haven't tried Neurotin yet because of the dental problems it causes. Remicaid is off the table because of my heart. I can elevate my legs in bed, but I can't lay on the floor, I can't get up. I will look up the chronic pain sight, it sounds like a good idea, I didn't know there was a sight like that, thank you. One thing that is upping the game is the CIDP, it is getting worse and tearing me up, my heart has felt like it was trying to crawl out of my chest today, and the GammaGard IVIG doesn't seem to be lasting but about 2.5/3 weeks. I do the IVIG once a month.

I did enjoy the chat and it did help to escape for a little while till the Lyrica could kick in a little. I will see my pulmonologist and my neurologist the first week of june. I don't know what we are going to do. Getting rid of the bad side effects of higher pred was good and I'm not sorry I did it, but I'm finding out I opened Pandora's box. The sarc Minions are having a field day and chewing me up, I seriously don't know what to do. I use to have good days pain wise, I haven't in a long time, it's been like a steady downhill trip, I can't seem to find the top anymore. But hey, I shouldn't gripe, I don't have ALS, or some of the other horrible things some of my clients do.

Thanks for listening, and letting me vent; I couldn't have taken much more without letting some of it out. Always remember you are appreciated.

To: neurosarcoidosis Sent: Sat, May 28, 2011 12:25:05 AMSubject: RE: gotta exhale

Connie, how long have you had this much pain? I know you've probably already told us, but bear with me--have you tried other drugs besides Lyrica? My best relief was from Neurontin & Cymbalta, but I had to quit the Neurontin when I had an odd little spell while driving & ended up breaking a telephone pole. Then I used just Cymbalta, but it didn't do enough, so we added Lyrica. That combo was almost as good as the Neurontin & Cymbalta. But then my dry eyes started getting much drier, and after some experimentation I realized that it was the Cymbalta, so I had to stop it. As bad as my feet hurt, the eyes were worse; like someone rubbing sandpaper in them. I only take 150 of Lyrica twice a day; I'm holding off on any increase as long as possible. I've told you about elevating the feet & having a little wire tent to hold the covers off. Some nights I have to put my feet up even higher; I'll either stack up pillows, or lie on the floor with my feet up on a chair, up higher than my head. That will help for awhile. I can't sleep on the floor, because the critters will want to kiss me too much, but it gives a little temporary relief. Another thing that sounds awful, but has actually helped me is capsaicin cream. it's made from hot peppers & it burns like the dickens when you apply it, but after a couple of days it does seem to help. It's also used for arthritis. This last time I bought a roll-on tube, because it's impossible to wash it off your hands & I didn't want to use new gloves every day. I hope that one of these suggestions helps, because I know how awful that pain is. That tells you how bad my leg/back pain are; it actually takes my mind off the neuropathic pain.Connie, you are probably already familiar with the American Chronic Pain Association. If not, here is their link: www.theacpa.orgUnder conditions A-Z you can find neuropathic pain, then on the right of that page are some coping suggestions. I've been thinking about doing the online pain log. I think I know what triggers worse episodes, but it would be interesting to actually track it & see if I'm aware of all the triggers. If nothing else, it may take our minds off the actual pain for awhile by keeping a chart! Well, I'm going to knock off here in a couple of minutes & get in my hot tub. My feet & leg are hurting more than usual, I think because I drove my son to work (2-hour round trip). I sincerely hope that you are able to get some relief, somehow. If you don't mind, I'll say some prayers for you. I really enjoyed the chat tonight; did that help take your mind off the pain for a bit?

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 27 May 2011 18:45:29 -0700Subject: gotta exhale

My neuropathy is hurting so bad I am having chest pain, and I'm getting nauseous. I feel like my feet are being burned, razorblade cut, and pulled apart all at once, then the muscle cramps start. The Lyrica side effects are too much to increase the dose anymore and still function at my job. I am not the type to sit and cry, but this has been this bad for way to long. I'm exhausted from lack of sleep, the pain won't let up, and the stabbing is so startling it has got my heart totally aggravated. My speech, and my memory has left for the holiday. I only have one claw left holding on the knot in the end of my rope. Thanks for listening I had to vent in writing, or scream at the time of my lungs; which the neighbors would take issue with. I appreciate you all.......connie

[Guest guest]

Can I say: "I feel your pain" with understanding at yourend, and without sounding/being overly facetious? I knw most of us with neuorsarc have the peripheral neuropathy and attendant pain -- and Rose, your finding of relief with hot/warm water, and heat, I, too, share. Many winter days here, as I am off work on disability, I ended up in our deep tub (no jets) for my afternoon nap. Only problem was my reading material often ended up soggy after it fell out of my hands. Only thng I never did get wet/ruin, thank goodness, was the cordless phone -- just a couple of near misses!

PS--though alone in house at time, I was extremely careful about falling asleep in tub, and made sure someone knew where I was and to check on me regularly . .. I just fit in tub and hard to slip, but if anyone else tries this ensure you are either not alone, or have a means of preventing your head from slipping into the water

Hope, Connie, you can find some relief from the pain and symptoms of this disease, without the pred; I am getting to the point where I am going to have to decide if the neurosarc is worse than the pred, or vice-versa. But, I do still have the remicaide to try and am hoping for the best there.

Take care, all.

in Niagara

To: neurosarcoidosis From: mamadogrose@...Date: Sun, 29 May 2011 03:43:28 -0400Subject: RE: gotta exhale

Connie, do you have access to a hot tub, or a deep bathtub? That often helps me more than the drugs. I can't use a regular bathtub anymore (can't get out without a couple of Marines to haul me up!). A shower doesn't do the trip. I have to let my legs go out in front of me. Right now I'm keeping the temp at 98-99 because my pregnant granddaughter is using the hot tub. That's actually warm enough for me now that the weather is warming up. I just sit in one of the corners with the jets to my back, hips & shoulders, with my legs out in front, sometimes I rest my knees on one of those foam noodles. I do some mile resistance exercises for my arms with sort foam pieces, then do some milk leg exercises. 10-15 min. does wonders for my feet. I either have a couple of rice sox warming in the microwave or a fleece blanket & sox warming in the dryer. Get out of that hot tob, dry off, get pj's on, hop in bed with my warm blanket, sox, and/or rice sox. If you don't have a hot tub, dry a regular tub if you are able to get out without any trouble. Make sure you have everything all ready, so that you don't get out of the tub, then have to walk/stand around for 30 min. before going to bed. It takes away most of the relief from the warm water. Now my son gave me one of those water foot massagers a few years ago. It was okay, but the vibration was uncomfortable, plus my feet were dependent, so it didn't really do the job.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 28 May 2011 22:22:57 -0700Subject: Re: gotta exhale

Thanks so much Rose, and I am always thankful for any prayers said on my behalf. I have stuck pretty much with the lyrica because of a couple of different things, side effects and trouble finding medicine I can actually take. Because of the chloroquine I can't mix some meds, I'm allergic to capsaisin, methotrexate, and immuran. I haven't tried Neurotin yet because of the dental problems it causes. Remicaid is off the table because of my heart. I can elevate my legs in bed, but I can't lay on the floor, I can't get up. I will look up the chronic pain sight, it sounds like a good idea, I didn't know there was a sight like that, thank you. One thing that is upping the game is the CIDP, it is getting worse and tearing me up, my heart has felt like it was trying to crawl out of my chest today, and the GammaGard IVIG doesn't seem to be lasting but about 2.5/3 weeks. I do the IVIG once a month.

I did enjoy the chat and it did help to escape for a little while till the Lyrica could kick in a little. I will see my pulmonologist and my neurologist the first week of june. I don't know what we are going to do. Getting rid of the bad side effects of higher pred was good and I'm not sorry I did it, but I'm finding out I opened Pandora's box. The sarc Minions are having a field day and chewing me up, I seriously don't know what to do. I use to have good days pain wise, I haven't in a long time, it's been like a steady downhill trip, I can't seem to find the top anymore. But hey, I shouldn't gripe, I don't have ALS, or some of the other horrible things some of my clients do.

Thanks for listening, and letting me vent; I couldn't have taken much more without letting some of it out. Always remember you are appreciated.

To: neurosarcoidosis Sent: Sat, May 28, 2011 12:25:05 AMSubject: RE: gotta exhale Connie, how long have you had this much pain? I know you've probably already told us, but bear with me--have you tried other drugs besides Lyrica? My best relief was from Neurontin & Cymbalta, but I had to quit the Neurontin when I had an odd little spell while driving & ended up breaking a telephone pole. Then I used just Cymbalta, but it didn't do enough, so we added Lyrica. That combo was almost as good as the Neurontin & Cymbalta. But then my dry eyes started getting much drier, and after some experimentation I realized that it was the Cymbalta, so I had to stop it. As bad as my feet hurt, the eyes were worse; like someone rubbing sandpaper in them. I only take 150 of Lyrica twice a day; I'm holding off on any increase as long as possible. I've told you about elevating the feet & having a little wire tent to hold the covers off. Some nights I have to put my feet up even higher; I'll either stack up pillows, or lie on the floor with my feet up on a chair, up higher than my head. That will help for awhile. I can't sleep on the floor, because the critters will want to kiss me too much, but it gives a little temporary relief. Another thing that sounds awful, but has actually helped me is capsaicin cream. it's made from hot peppers & it burns like the dickens when you apply it, but after a couple of days it does seem to help. It's also used for arthritis. This last time I bought a roll-on tube, because it's impossible to wash it off your hands & I didn't want to use new gloves every day. I hope that one of these suggestions helps, because I know how awful that pain is. That tells you how bad my leg/back pain are; it actually takes my mind off the neuropathic pain.Connie, you are probably already familiar with the American Chronic Pain Association. If not, here is their link: www.theacpa.orgUnder conditions A-Z you can find neuropathic pain, then on the right of that page are some coping suggestions. I've been thinking about doing the online pain log. I think I know what triggers worse episodes, but it would be interesting to actually track it & see if I'm aware of all the triggers. If nothing else, it may take our minds off the actual pain for awhile by keeping a chart! Well, I'm going to knock off here in a couple of minutes & get in my hot tub. My feet & leg are hurting more than usual, I think because I drove my son to work (2-hour round trip). I sincerely hope that you are able to get some relief, somehow. If you don't mind, I'll say some prayers for you. I really enjoyed the chat tonight; did that help take your mind off the pain for a bit?

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 27 May 2011 18:45:29 -0700Subject: gotta exhale

My neuropathy is hurting so bad I am having chest pain, and I'm getting nauseous. I feel like my feet are being burned, razorblade cut, and pulled apart all at once, then the muscle cramps start. The Lyrica side effects are too much to increase the dose anymore and still function at my job. I am not the type to sit and cry, but this has been this bad for way to long. I'm exhausted from lack of sleep, the pain won't let up, and the stabbing is so startling it has got my heart totally aggravated. My speech, and my memory has left for the holiday. I only have one claw left holding on the knot in the end of my rope. Thanks for listening I had to vent in writing, or scream at the time of my lungs; which the neighbors would take issue with. I appreciate you all.......connie

[Guest guest]

, I have fallen sleep in my hot tub. I put my head in a little kid's swim ring, with one of those noodles under my knees & just float around in the tub, looking up at the night sky. I can't think of a better way to relax. Kayaking, of course! The river is low enough today, but I didn't sleep well last night & I'm about to fall asleep again (3:30 in the afternoon), so we might go tomorrow. I couldn't find any woolen sox in town, so will have to order them online, or get to knit them for me!

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Sun, 29 May 2011 13:12:11 +0000Subject: RE: gotta exhale

Can I say: "I feel your pain" with understanding at yourend, and without sounding/being overly facetious? I knw most of us with neuorsarc have the peripheral neuropathy and attendant pain -- and Rose, your finding of relief with hot/warm water, and heat, I, too, share. Many winter days here, as I am off work on disability, I ended up in our deep tub (no jets) for my afternoon nap. Only problem was my reading material often ended up soggy after it fell out of my hands. Only thng I never did get wet/ruin, thank goodness, was the cordless phone -- just a couple of near misses!PS--though alone in house at time, I was extremely careful about falling asleep in tub, and made sure someone knew where I was and to check on me regularly . .. I just fit in tub and hard to slip, but if anyone else tries this ensure you are either not alone, or have a means of preventing your head from slipping into the waterHope, Connie, you can find some relief from the pain and symptoms of this disease, without the pred; I am getting to the point where I am going to have to decide if the neurosarc is worse than the pred, or vice-versa. But, I do still have the remicaide to try and am hoping for the best there.Take care, all. in Niagara

To: neurosarcoidosis From: mamadogrose@...Date: Sun, 29 May 2011 03:43:28 -0400Subject: RE: gotta exhale

Connie, do you have access to a hot tub, or a deep bathtub? That often helps me more than the drugs. I can't use a regular bathtub anymore (can't get out without a couple of Marines to haul me up!). A shower doesn't do the trip. I have to let my legs go out in front of me. Right now I'm keeping the temp at 98-99 because my pregnant granddaughter is using the hot tub. That's actually warm enough for me now that the weather is warming up. I just sit in one of the corners with the jets to my back, hips & shoulders, with my legs out in front, sometimes I rest my knees on one of those foam noodles. I do some mile resistance exercises for my arms with sort foam pieces, then do some milk leg exercises. 10-15 min. does wonders for my feet. I either have a couple of rice sox warming in the microwave or a fleece blanket & sox warming in the dryer. Get out of that hot tob, dry off, get pj's on, hop in bed with my warm blanket, sox, and/or rice sox. If you don't have a hot tub, dry a regular tub if you are able to get out without any trouble. Make sure you have everything all ready, so that you don't get out of the tub, then have to walk/stand around for 30 min. before going to bed. It takes away most of the relief from the warm water. Now my son gave me one of those water foot massagers a few years ago. It was okay, but the vibration was uncomfortable, plus my feet were dependent, so it didn't really do the job.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 28 May 2011 22:22:57 -0700Subject: Re: gotta exhale

Thanks so much Rose, and I am always thankful for any prayers said on my behalf. I have stuck pretty much with the lyrica because of a couple of different things, side effects and trouble finding medicine I can actually take. Because of the chloroquine I can't mix some meds, I'm allergic to capsaisin, methotrexate, and immuran. I haven't tried Neurotin yet because of the dental problems it causes. Remicaid is off the table because of my heart. I can elevate my legs in bed, but I can't lay on the floor, I can't get up. I will look up the chronic pain sight, it sounds like a good idea, I didn't know there was a sight like that, thank you. One thing that is upping the game is the CIDP, it is getting worse and tearing me up, my heart has felt like it was trying to crawl out of my chest today, and the GammaGard IVIG doesn't seem to be lasting but about 2.5/3 weeks. I do the IVIG once a month.

I did enjoy the chat and it did help to escape for a little while till the Lyrica could kick in a little. I will see my pulmonologist and my neurologist the first week of june. I don't know what we are going to do. Getting rid of the bad side effects of higher pred was good and I'm not sorry I did it, but I'm finding out I opened Pandora's box. The sarc Minions are having a field day and chewing me up, I seriously don't know what to do. I use to have good days pain wise, I haven't in a long time, it's been like a steady downhill trip, I can't seem to find the top anymore. But hey, I shouldn't gripe, I don't have ALS, or some of the other horrible things some of my clients do.

Thanks for listening, and letting me vent; I couldn't have taken much more without letting some of it out. Always remember you are appreciated.

To: neurosarcoidosis Sent: Sat, May 28, 2011 12:25:05 AMSubject: RE: gotta exhale Connie, how long have you had this much pain? I know you've probably already told us, but bear with me--have you tried other drugs besides Lyrica? My best relief was from Neurontin & Cymbalta, but I had to quit the Neurontin when I had an odd little spell while driving & ended up breaking a telephone pole. Then I used just Cymbalta, but it didn't do enough, so we added Lyrica. That combo was almost as good as the Neurontin & Cymbalta. But then my dry eyes started getting much drier, and after some experimentation I realized that it was the Cymbalta, so I had to stop it. As bad as my feet hurt, the eyes were worse; like someone rubbing sandpaper in them. I only take 150 of Lyrica twice a day; I'm holding off on any increase as long as possible. I've told you about elevating the feet & having a little wire tent to hold the covers off. Some nights I have to put my feet up even higher; I'll either stack up pillows, or lie on the floor with my feet up on a chair, up higher than my head. That will help for awhile. I can't sleep on the floor, because the critters will want to kiss me too much, but it gives a little temporary relief. Another thing that sounds awful, but has actually helped me is capsaicin cream. it's made from hot peppers & it burns like the dickens when you apply it, but after a couple of days it does seem to help. It's also used for arthritis. This last time I bought a roll-on tube, because it's impossible to wash it off your hands & I didn't want to use new gloves every day. I hope that one of these suggestions helps, because I know how awful that pain is. That tells you how bad my leg/back pain are; it actually takes my mind off the neuropathic pain.Connie, you are probably already familiar with the American Chronic Pain Association. If not, here is their link: www.theacpa.orgUnder conditions A-Z you can find neuropathic pain, then on the right of that page are some coping suggestions. I've been thinking about doing the online pain log. I think I know what triggers worse episodes, but it would be interesting to actually track it & see if I'm aware of all the triggers. If nothing else, it may take our minds off the actual pain for awhile by keeping a chart! Well, I'm going to knock off here in a couple of minutes & get in my hot tub. My feet & leg are hurting more than usual, I think because I drove my son to work (2-hour round trip). I sincerely hope that you are able to get some relief, somehow. If you don't mind, I'll say some prayers for you. I really enjoyed the chat tonight; did that help take your mind off the pain for a bit?

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 27 May 2011 18:45:29 -0700Subject: gotta exhale

My neuropathy is hurting so bad I am having chest pain, and I'm getting nauseous. I feel like my feet are being burned, razorblade cut, and pulled apart all at once, then the muscle cramps start. The Lyrica side effects are too much to increase the dose anymore and still function at my job. I am not the type to sit and cry, but this has been this bad for way to long. I'm exhausted from lack of sleep, the pain won't let up, and the stabbing is so startling it has got my heart totally aggravated. My speech, and my memory has left for the holiday. I only have one claw left holding on the knot in the end of my rope. Thanks for listening I had to vent in writing, or scream at the time of my lungs; which the neighbors would take issue with. I appreciate you all.......connie

[Guest guest]

Hi Connie, I got some significant measure of relief from (the severe burning and stabbing neddle pain) of the neuropathy in my legs and feet from a treatment I received last year through my neurologist. I don't know the name of the treatment, but it envolved getting 3 injections of lidocane in each ankle, having some type of wires with small suction cups attached to sites on my legs, then having this machine turned on for about 20-25 minutes. This was done 2x weekly.The neurologist said that I would need 6 weeks of treatments,but I could only tolerate it for 3 weeks. The treatment by itself was not really that uncomfortable, but at night my legs had excrutiating pain on the days I received those treatments. I called my doctor to tell him that I could not tolerate the after

effects of the treatments anymore and needed to stop the treatment. However, exactly one week after I canceled the treatment, the stabbing neddle pain and severe burning had left. I now have only minimal burning nerve pain that is somewhat tolerable. I saw my neurologist 1 year later for a checkup. He said if the severe pain comes back that I should probably start the treatments again. I was desperate for relief so I tried this treatment. Since I've tried it and know the expected downside, I would still get the treatment again if my severe neuropathy pain returns. I'm still in pain daily, just not a bad.

[Guest guest]

I don't have access to a hot tub, and even though our tub is deep I can not get up out of it. They wanted to replace my left knee years ago even though I technically wasn't old enough, but the anesthesiologist chickened out after he found out what happened when they tried to put me to sleep before. The sunset (rise) xray showed eight little minions having a chewing good time then, the right knee isn't much better. Last time I fell in the yard, I had to crawl to a tree (which hurt like a cracker) and pull myself up the trunk of the tree, hey at least I layed there and laughed for a while. It's odd though now that you said something about the heat, I noticed that when I use a certain kind of supersoft, warm fuzzy blanket I seem to sleep better, if I'm the least bit

cold i can hang it up, and I am like you where the breeze is concerned. Thanks for the help Rose, I do appreciate it.

To: neurosarcoidosis Sent: Sun, May 29, 2011 3:43:28 AMSubject: RE: gotta exhale

Connie, do you have access to a hot tub, or a deep bathtub? That often helps me more than the drugs. I can't use a regular bathtub anymore (can't get out without a couple of Marines to haul me up!). A shower doesn't do the trip. I have to let my legs go out in front of me. Right now I'm keeping the temp at 98-99 because my pregnant granddaughter is using the hot tub. That's actually warm enough for me now that the weather is warming up. I just sit in one of the corners with the jets to my back, hips & shoulders, with my legs out in front, sometimes I rest my knees on one of those foam noodles. I do some mile resistance exercises for my arms with sort foam pieces, then do some milk leg exercises. 10-15 min. does wonders for my feet. I either have a couple of rice sox warming in the microwave or a fleece blanket & sox warming in the dryer. Get out of that hot tob, dry off, get

pj's on, hop in bed with my warm blanket, sox, and/or rice sox. If you don't have a hot tub, dry a regular tub if you are able to get out without any trouble. Make sure you have everything all ready, so that you don't get out of the tub, then have to walk/stand around for 30 min. before going to bed. It takes away most of the relief from the warm water. Now my son gave me one of those water foot massagers a few years ago. It was okay, but the vibration was uncomfortable, plus my feet were dependent, so it didn't really do the job.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 28 May 2011 22:22:57 -0700Subject: Re: gotta exhale

Thanks so much Rose, and I am always thankful for any prayers said on my behalf. I have stuck pretty much with the lyrica because of a couple of different things, side effects and trouble finding medicine I can actually take. Because of the chloroquine I can't mix some meds, I'm allergic to capsaisin, methotrexate, and immuran. I haven't tried Neurotin yet because of the dental problems it causes. Remicaid is off the table because of my heart. I can elevate my legs in bed, but I can't lay on the floor, I can't get up. I will look up the chronic pain sight, it sounds like a good idea, I didn't know there was a sight like that, thank you. One thing that is upping the game is the CIDP, it is getting worse and tearing me up, my heart has felt like it was trying to crawl out of my chest today, and the GammaGard IVIG doesn't seem to be lasting but about 2.5/3 weeks. I do the IVIG once a month.

I did enjoy the chat and it did help to escape for a little while till the Lyrica could kick in a little. I will see my pulmonologist and my neurologist the first week of june. I don't know what we are going to do. Getting rid of the bad side effects of higher pred was good and I'm not sorry I did it, but I'm finding out I opened Pandora's box. The sarc Minions are having a field day and chewing me up, I seriously don't know what to do. I use to have good days pain wise, I haven't in a long time, it's been like a steady downhill trip, I can't seem to find the top anymore. But hey, I shouldn't gripe, I don't have ALS, or some of the other horrible things some of my clients do.

Thanks for listening, and letting me vent; I couldn't have taken much more without letting some of it out. Always remember you are appreciated.

To: neurosarcoidosis Sent: Sat, May 28, 2011 12:25:05 AMSubject: RE: gotta exhale Connie, how long have you had this much pain? I know you've probably already told us, but bear with me--have you tried other drugs besides Lyrica? My best relief was from Neurontin & Cymbalta, but I had to quit the Neurontin when I had an odd little spell while driving & ended up breaking a telephone pole. Then I used just Cymbalta, but it didn't do enough, so we added Lyrica. That combo was almost as good as the Neurontin & Cymbalta. But then my dry eyes started getting much drier, and after some experimentation I realized that it was the Cymbalta, so I had to stop it. As bad as my feet hurt, the eyes were worse; like someone rubbing sandpaper in them. I only take 150 of Lyrica twice a day; I'm holding off on any increase as long as possible. I've told you about elevating the feet & having a little wire tent to hold the covers off. Some nights I have to put my

feet up even higher; I'll either stack up pillows, or lie on the floor with my feet up on a chair, up higher than my head. That will help for awhile. I can't sleep on the floor, because the critters will want to kiss me too much, but it gives a little temporary relief. Another thing that sounds awful, but has actually helped me is capsaicin cream. it's made from hot peppers & it burns like the dickens when you apply it, but after a couple of days it does seem to help. It's also used for arthritis. This last time I bought a roll-on tube, because it's impossible to wash it off your hands & I didn't want to use new gloves every day. I hope that one of these suggestions helps, because I know how awful that pain is. That tells you how bad my leg/back pain are; it actually takes my mind off the neuropathic pain.Connie, you are probably already familiar with the American Chronic Pain

Association. If not, here is their link: www.theacpa.orgUnder conditions A-Z you can find neuropathic pain, then on the right of that page are some coping suggestions. I've been thinking about doing the online pain log. I think I know what triggers worse episodes, but it would be interesting to actually track it & see if I'm aware of all the triggers. If nothing else, it may take our minds off the actual pain for awhile by keeping a chart! Well, I'm going to knock off here in a couple of minutes & get in my hot tub. My feet & leg are hurting more than usual, I think because I drove my son to work (2-hour round trip). I sincerely hope that you are able to get some relief, somehow. If you don't mind, I'll say some prayers for you. I really enjoyed the chat tonight; did that help take your mind off the pain for a

bit?

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 27 May 2011 18:45:29 -0700Subject: gotta exhale

My neuropathy is hurting so bad I am having chest pain, and I'm getting nauseous. I feel like my feet are being burned, razorblade cut, and pulled apart all at once, then the muscle cramps start. The Lyrica side effects are too much to increase the dose anymore and still function at my job. I am not the type to sit and cry, but this has been this bad for way to long. I'm exhausted from lack of sleep, the pain won't let up, and the stabbing is so startling it has got my heart totally aggravated. My speech, and my memory has left for the holiday. I only have one claw left holding on the knot in the end of my rope. Thanks for listening I had to vent in writing, or scream at the time of my lungs; which the neighbors would take issue with. I appreciate you all.......connie

[Guest guest]

Thanks , I know so many of the group face daunting problems thanks to the illness and Pred. Even though I'm a tough individual, it got ahead of me. Thanks for the info

To: neurosarcoidosis Sent: Sun, May 29, 2011 9:12:11 AMSubject: RE: gotta exhale

Can I say: "I feel your pain" with understanding at yourend, and without sounding/being overly facetious? I knw most of us with neuorsarc have the peripheral neuropathy and attendant pain -- and Rose, your finding of relief with hot/warm water, and heat, I, too, share. Many winter days here, as I am off work on disability, I ended up in our deep tub (no jets) for my afternoon nap. Only problem was my reading material often ended up soggy after it fell out of my hands. Only thng I never did get wet/ruin, thank goodness, was the cordless phone -- just a couple of near misses!PS--though alone in house at time, I was extremely careful about falling asleep in tub, and made sure someone knew where I was and to check on me regularly . .. I just fit in tub and hard to slip, but if anyone else tries this ensure you are either not alone, or have a means of preventing your head from slipping into

the waterHope, Connie, you can find some relief from the pain and symptoms of this disease, without the pred; I am getting to the point where I am going to have to decide if the neurosarc is worse than the pred, or vice-versa. But, I do still have the remicaide to try and am hoping for the best there.Take care, all. in Niagara

To: neurosarcoidosis From: mamadogrose@...Date: Sun, 29 May 2011 03:43:28 -0400Subject: RE: gotta exhaleConnie, do you have access to a hot tub, or a deep bathtub? That often helps me more than the drugs. I can't use a regular bathtub anymore (can't get out without a couple of Marines to haul me up!). A shower doesn't do the trip. I have to let my legs go out in front of me. Right now I'm keeping the temp at 98-99 because my pregnant granddaughter is using the hot tub. That's actually warm enough for me now that the weather is warming up. I just sit in one of the corners with the jets to my back, hips & shoulders, with my legs out in front, sometimes I rest my knees on one of those foam noodles. I do some mile resistance exercises for my arms with sort foam pieces, then do some milk leg exercises. 10-15 min. does wonders for my

feet. I either have a couple of rice sox warming in the microwave or a fleece blanket & sox warming in the dryer. Get out of that hot tob, dry off, get pj's on, hop in bed with my warm blanket, sox, and/or rice sox. If you don't have a hot tub, dry a regular tub if you are able to get out without any trouble. Make sure you have everything all ready, so that you don't get out of the tub, then have to walk/stand around for 30 min. before going to bed. It takes away most of the relief from the warm water. Now my son gave me one of those water foot massagers a few years ago. It was okay, but the vibration was uncomfortable, plus my feet were dependent, so it didn't really do the job.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 28 May 2011 22:22:57 -0700Subject: Re: gotta exhale

Thanks so much Rose, and I am always thankful for any prayers said on my behalf. I have stuck pretty much with the lyrica because of a couple of different things, side effects and trouble finding medicine I can actually take. Because of the chloroquine I can't mix some meds, I'm allergic to capsaisin, methotrexate, and immuran. I haven't tried Neurotin yet because of the dental problems it causes. Remicaid is off the table because of my heart. I can elevate my legs in bed, but I can't lay on the floor, I can't get up. I will look up the chronic pain sight, it sounds like a good idea, I didn't know there was a sight like that, thank you. One thing that is upping the game is the CIDP, it is getting worse and tearing me up, my heart has felt like it was trying to crawl out of my chest today, and the GammaGard IVIG doesn't seem to be lasting but about 2.5/3 weeks. I do the IVIG once a month.

I did enjoy the chat and it did help to escape for a little while till the Lyrica could kick in a little. I will see my pulmonologist and my neurologist the first week of june. I don't know what we are going to do. Getting rid of the bad side effects of higher pred was good and I'm not sorry I did it, but I'm finding out I opened Pandora's box. The sarc Minions are having a field day and chewing me up, I seriously don't know what to do. I use to have good days pain wise, I haven't in a long time, it's been like a steady downhill trip, I can't seem to find the top anymore. But hey, I shouldn't gripe, I don't have ALS, or some of the other horrible things some of my clients do.

Thanks for listening, and letting me vent; I couldn't have taken much more without letting some of it out. Always remember you are appreciated.

To: neurosarcoidosis Sent: Sat, May 28, 2011 12:25:05 AMSubject: RE: gotta exhale Connie, how long have you had this much pain? I know you've probably already told us, but bear with me--have you tried other drugs besides Lyrica? My best relief was from Neurontin & Cymbalta, but I had to quit the Neurontin when I had an odd little spell while driving & ended up breaking a telephone pole. Then I used just Cymbalta, but it didn't do enough, so we added Lyrica. That combo was almost as good as the Neurontin & Cymbalta. But then my dry eyes started getting much drier, and after some experimentation I realized that it was the Cymbalta, so I had to stop it. As bad as my feet hurt, the eyes were worse; like someone rubbing sandpaper in them. I only take 150 of Lyrica twice a day; I'm holding off on any increase as long as possible. I've told you about elevating the feet & having a little wire tent to hold the covers off. Some nights I have to put my

feet up even higher; I'll either stack up pillows, or lie on the floor with my feet up on a chair, up higher than my head. That will help for awhile. I can't sleep on the floor, because the critters will want to kiss me too much, but it gives a little temporary relief. Another thing that sounds awful, but has actually helped me is capsaicin cream. it's made from hot peppers & it burns like the dickens when you apply it, but after a couple of days it does seem to help. It's also used for arthritis. This last time I bought a roll-on tube, because it's impossible to wash it off your hands & I didn't want to use new gloves every day. I hope that one of these suggestions helps, because I know how awful that pain is. That tells you how bad my leg/back pain are; it actually takes my mind off the neuropathic pain.Connie, you are probably already familiar with the American Chronic Pain

Association. If not, here is their link: www.theacpa.orgUnder conditions A-Z you can find neuropathic pain, then on the right of that page are some coping suggestions. I've been thinking about doing the online pain log. I think I know what triggers worse episodes, but it would be interesting to actually track it & see if I'm aware of all the triggers. If nothing else, it may take our minds off the actual pain for awhile by keeping a chart! Well, I'm going to knock off here in a couple of minutes & get in my hot tub. My feet & leg are hurting more than usual, I think because I drove my son to work (2-hour round trip). I sincerely hope that you are able to get some relief, somehow. If you don't mind, I'll say some prayers for you. I really enjoyed the chat tonight; did that help take your mind off the pain for a

bit?

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 27 May 2011 18:45:29 -0700Subject: gotta exhale

My neuropathy is hurting so bad I am having chest pain, and I'm getting nauseous. I feel like my feet are being burned, razorblade cut, and pulled apart all at once, then the muscle cramps start. The Lyrica side effects are too much to increase the dose anymore and still function at my job. I am not the type to sit and cry, but this has been this bad for way to long. I'm exhausted from lack of sleep, the pain won't let up, and the stabbing is so startling it has got my heart totally aggravated. My speech, and my memory has left for the holiday. I only have one claw left holding on the knot in the end of my rope. Thanks for listening I had to vent in writing, or scream at the time of my lungs; which the neighbors would take issue with. I appreciate you all.......connie

[Guest guest]

I got kind of tickled when I read about the woolen socks, another weird thing about me. I am so allergic to wool it swells up my airways in nothing flat, can we say asthma attack from the bad place. My "mean" ex used to look at me and tell me "all I'd have to do is give you cough syrup (I'm allergic to codiene) and wrap you in a wool blanket, nobody would ever figure it out" Note the word "ex"

To: neurosarcoidosis Sent: Sun, May 29, 2011 3:28:19 PMSubject: RE: gotta exhale

, I have fallen sleep in my hot tub. I put my head in a little kid's swim ring, with one of those noodles under my knees & just float around in the tub, looking up at the night sky. I can't think of a better way to relax. Kayaking, of course! The river is low enough today, but I didn't sleep well last night & I'm about to fall asleep again (3:30 in the afternoon), so we might go tomorrow. I couldn't find any woolen sox in town, so will have to order them online, or get to knit them for me!

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Sun, 29 May 2011 13:12:11 +0000Subject: RE: gotta exhaleCan I say: "I feel your pain" with understanding at yourend, and without sounding/being overly facetious? I knw most of us with neuorsarc have the peripheral neuropathy and attendant pain -- and Rose, your finding of relief with hot/warm water, and heat, I, too, share. Many winter days here, as I am off work on disability, I ended up in our deep tub (no jets) for my afternoon nap. Only problem was my reading material often ended up soggy after it fell out of my hands. Only thng I never did get wet/ruin, thank goodness, was the cordless phone -- just a couple of near misses!PS--though alone in house at time, I was extremely careful about falling asleep in tub, and made sure someone knew where I was and to check on me regularly .

... I just fit in tub and hard to slip, but if anyone else tries this ensure you are either not alone, or have a means of preventing your head from slipping into the waterHope, Connie, you can find some relief from the pain and symptoms of this disease, without the pred; I am getting to the point where I am going to have to decide if the neurosarc is worse than the pred, or vice-versa. But, I do still have the remicaide to try and am hoping for the best there.Take care, all. in Niagara

To: neurosarcoidosis From: mamadogrose@...Date: Sun, 29 May 2011 03:43:28 -0400Subject: RE: gotta exhaleConnie, do you have access to a hot tub, or a deep bathtub? That often helps me more than the drugs. I can't use a regular bathtub anymore (can't get out without a couple of Marines to haul me up!). A shower doesn't do the trip. I have to let my legs go out in front of me. Right now I'm keeping the temp at 98-99 because my pregnant granddaughter is using the hot tub. That's actually warm enough for me now that the weather is warming up. I just sit in one of the corners with the jets to my back, hips & shoulders, with my legs out in front, sometimes I rest my knees on one of those foam noodles. I do some mile resistance exercises for my arms with sort foam pieces, then do some milk leg exercises. 10-15 min. does wonders for my

feet. I either have a couple of rice sox warming in the microwave or a fleece blanket & sox warming in the dryer. Get out of that hot tob, dry off, get pj's on, hop in bed with my warm blanket, sox, and/or rice sox. If you don't have a hot tub, dry a regular tub if you are able to get out without any trouble. Make sure you have everything all ready, so that you don't get out of the tub, then have to walk/stand around for 30 min. before going to bed. It takes away most of the relief from the warm water. Now my son gave me one of those water foot massagers a few years ago. It was okay, but the vibration was uncomfortable, plus my feet were dependent, so it didn't really do the job.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 28 May 2011 22:22:57 -0700Subject: Re: gotta exhale

Thanks so much Rose, and I am always thankful for any prayers said on my behalf. I have stuck pretty much with the lyrica because of a couple of different things, side effects and trouble finding medicine I can actually take. Because of the chloroquine I can't mix some meds, I'm allergic to capsaisin, methotrexate, and immuran. I haven't tried Neurotin yet because of the dental problems it causes. Remicaid is off the table because of my heart. I can elevate my legs in bed, but I can't lay on the floor, I can't get up. I will look up the chronic pain sight, it sounds like a good idea, I didn't know there was a sight like that, thank you. One thing that is upping the game is the CIDP, it is getting worse and tearing me up, my heart has felt like it was trying to crawl out of my chest today, and the GammaGard IVIG doesn't seem to be lasting but about 2.5/3 weeks. I do the IVIG once a month.

I did enjoy the chat and it did help to escape for a little while till the Lyrica could kick in a little. I will see my pulmonologist and my neurologist the first week of june. I don't know what we are going to do. Getting rid of the bad side effects of higher pred was good and I'm not sorry I did it, but I'm finding out I opened Pandora's box. The sarc Minions are having a field day and chewing me up, I seriously don't know what to do. I use to have good days pain wise, I haven't in a long time, it's been like a steady downhill trip, I can't seem to find the top anymore. But hey, I shouldn't gripe, I don't have ALS, or some of the other horrible things some of my clients do.

Thanks for listening, and letting me vent; I couldn't have taken much more without letting some of it out. Always remember you are appreciated.

To: neurosarcoidosis Sent: Sat, May 28, 2011 12:25:05 AMSubject: RE: gotta exhale Connie, how long have you had this much pain? I know you've probably already told us, but bear with me--have you tried other drugs besides Lyrica? My best relief was from Neurontin & Cymbalta, but I had to quit the Neurontin when I had an odd little spell while driving & ended up breaking a telephone pole. Then I used just Cymbalta, but it didn't do enough, so we added Lyrica. That combo was almost as good as the Neurontin & Cymbalta. But then my dry eyes started getting much drier, and after some experimentation I realized that it was the Cymbalta, so I had to stop it. As bad as my feet hurt, the eyes were worse; like someone rubbing sandpaper in them. I only take 150 of Lyrica twice a day; I'm holding off on any increase as long as possible. I've told you about elevating the feet & having a little wire tent to hold the covers off. Some nights I have to put my

feet up even higher; I'll either stack up pillows, or lie on the floor with my feet up on a chair, up higher than my head. That will help for awhile. I can't sleep on the floor, because the critters will want to kiss me too much, but it gives a little temporary relief. Another thing that sounds awful, but has actually helped me is capsaicin cream. it's made from hot peppers & it burns like the dickens when you apply it, but after a couple of days it does seem to help. It's also used for arthritis. This last time I bought a roll-on tube, because it's impossible to wash it off your hands & I didn't want to use new gloves every day. I hope that one of these suggestions helps, because I know how awful that pain is. That tells you how bad my leg/back pain are; it actually takes my mind off the neuropathic pain.Connie, you are probably already familiar with the American Chronic Pain

Association. If not, here is their link: www.theacpa.orgUnder conditions A-Z you can find neuropathic pain, then on the right of that page are some coping suggestions. I've been thinking about doing the online pain log. I think I know what triggers worse episodes, but it would be interesting to actually track it & see if I'm aware of all the triggers. If nothing else, it may take our minds off the actual pain for awhile by keeping a chart! Well, I'm going to knock off here in a couple of minutes & get in my hot tub. My feet & leg are hurting more than usual, I think because I drove my son to work (2-hour round trip). I sincerely hope that you are able to get some relief, somehow. If you don't mind, I'll say some prayers for you. I really enjoyed the chat tonight; did that help take your mind off the pain for a

bit?

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 27 May 2011 18:45:29 -0700Subject: gotta exhale

My neuropathy is hurting so bad I am having chest pain, and I'm getting nauseous. I feel like my feet are being burned, razorblade cut, and pulled apart all at once, then the muscle cramps start. The Lyrica side effects are too much to increase the dose anymore and still function at my job. I am not the type to sit and cry, but this has been this bad for way to long. I'm exhausted from lack of sleep, the pain won't let up, and the stabbing is so startling it has got my heart totally aggravated. My speech, and my memory has left for the holiday. I only have one claw left holding on the knot in the end of my rope. Thanks for listening I had to vent in writing, or scream at the time of my lungs; which the neighbors would take issue with. I appreciate you all.......connie

[Guest guest]

Thanks , I'm thinking maybe it was some kind of tens unit. Because of my pacer, I can not be hooked up to any kind of electrical impulse device. The neurosurgeon I guess had forgotten about my pacer and had a company contact me about a unit, didn't take them long to get off the phone when they found out about the pacer.

To: Neurosarcoidosis Sent: Mon, May 30, 2011 10:58:24 AMSubject: RE: gotta exhale

Hi Connie, I got some significant measure of relief from (the severe burning and stabbing neddle pain) of the neuropathy in my legs and feet from a treatment I received last year through my neurologist. I don't know the name of the treatment, but it envolved getting 3 injections of lidocane in each ankle, having some type of wires with small suction cups attached to sites on my legs, then having this machine turned on for about 20-25 minutes. This was done 2x weekly.The neurologist said that I would need 6 weeks of treatments,but I could only tolerate it for 3 weeks. The treatment by itself was not really that uncomfortable, but at night my legs had excrutiating pain on the days I received those treatments. I called my doctor to tell him that I could not tolerate the after effects of the treatments anymore and needed to stop the treatment. However, exactly one week

after I canceled the treatment, the stabbing neddle pain and severe burning had left. I now have only minimal burning nerve pain that is somewhat tolerable. I saw my neurologist 1 year later for a checkup. He said if the severe pain comes back that I should probably start the treatments again. I was desperate for relief so I tried this treatment. Since I've tried it and know the expected downside, I would still get the treatment again if my severe neuropathy pain returns. I'm still in pain daily, just not a bad.

[Guest guest]

Rose and Connie: thanks for the smiles; I envy you, Rose, your night-sky sleep Sounds wonderful; and Connie, how did you find my ex??? (Not the wool allergy, though I am allergic to codiene, but just overall . . .???

WiN

To: Neurosarcoidosis From: conaugusta@...Date: Mon, 30 May 2011 17:25:34 -0700Subject: Re: gotta exhale

I got kind of tickled when I read about the woolen socks, another weird thing about me. I am so allergic to wool it swells up my airways in nothing flat, can we say asthma attack from the bad place. My "mean" ex used to look at me and tell me "all I'd have to do is give you cough syrup (I'm allergic to codiene) and wrap you in a wool blanket, nobody would ever figure it out" Note the word "ex"

To: neurosarcoidosis Sent: Sun, May 29, 2011 3:28:19 PMSubject: RE: gotta exhale

, I have fallen sleep in my hot tub. I put my head in a little kid's swim ring, with one of those noodles under my knees & just float around in the tub, looking up at the night sky. I can't think of a better way to relax. Kayaking, of course! The river is low enough today, but I didn't sleep well last night & I'm about to fall asleep again (3:30 in the afternoon), so we might go tomorrow. I couldn't find any woolen sox in town, so will have to order them online, or get to knit them for me!

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Sun, 29 May 2011 13:12:11 +0000Subject: RE: gotta exhaleCan I say: "I feel your pain" with understanding at yourend, and without sounding/being overly facetious? I knw most of us with neuorsarc have the peripheral neuropathy and attendant pain -- and Rose, your finding of relief with hot/warm water, and heat, I, too, share. Many winter days here, as I am off work on disability, I ended up in our deep tub (no jets) for my afternoon nap. Only problem was my reading material often ended up soggy after it fell out of my hands. Only thng I never did get wet/ruin, thank goodness, was the cordless phone -- just a couple of near misses!PS--though alone in house at time, I was extremely careful about falling asleep in tub, and made sure someone knew where I was and to check on me regularly . .. I just fit in tub and hard to slip, but if anyone else tries this ensure you are either not alone, or have a means of preventing your head from slipping into the waterHope, Connie, you can find some relief from the pain and symptoms of this disease, without the pred; I am getting to the point where I am going to have to decide if the neurosarc is worse than the pred, or vice-versa. But, I do still have the remicaide to try and am hoping for the best there.Take care, all. in Niagara

To: neurosarcoidosis From: mamadogrose@...Date: Sun, 29 May 2011 03:43:28 -0400Subject: RE: gotta exhaleConnie, do you have access to a hot tub, or a deep bathtub? That often helps me more than the drugs. I can't use a regular bathtub anymore (can't get out without a couple of Marines to haul me up!). A shower doesn't do the trip. I have to let my legs go out in front of me. Right now I'm keeping the temp at 98-99 because my pregnant granddaughter is using the hot tub. That's actually warm enough for me now that the weather is warming up. I just sit in one of the corners with the jets to my back, hips & shoulders, with my legs out in front, sometimes I rest my knees on one of those foam noodles. I do some mile resistance exercises for my arms with sort foam pieces, then do some milk leg exercises. 10-15 min. does wonders for my feet. I either have a couple of rice sox warming in the microwave or a fleece blanket & sox warming in the dryer. Get out of that hot tob, dry off, get pj's on, hop in bed with my warm blanket, sox, and/or rice sox. If you don't have a hot tub, dry a regular tub if you are able to get out without any trouble. Make sure you have everything all ready, so that you don't get out of the tub, then have to walk/stand around for 30 min. before going to bed. It takes away most of the relief from the warm water. Now my son gave me one of those water foot massagers a few years ago. It was okay, but the vibration was uncomfortable, plus my feet were dependent, so it didn't really do the job.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 28 May 2011 22:22:57 -0700Subject: Re: gotta exhale

Thanks so much Rose, and I am always thankful for any prayers said on my behalf. I have stuck pretty much with the lyrica because of a couple of different things, side effects and trouble finding medicine I can actually take. Because of the chloroquine I can't mix some meds, I'm allergic to capsaisin, methotrexate, and immuran. I haven't tried Neurotin yet because of the dental problems it causes. Remicaid is off the table because of my heart. I can elevate my legs in bed, but I can't lay on the floor, I can't get up. I will look up the chronic pain sight, it sounds like a good idea, I didn't know there was a sight like that, thank you. One thing that is upping the game is the CIDP, it is getting worse and tearing me up, my heart has felt like it was trying to crawl out of my chest today, and the GammaGard IVIG doesn't seem to be lasting but about 2.5/3 weeks. I do the IVIG once a month.

I did enjoy the chat and it did help to escape for a little while till the Lyrica could kick in a little. I will see my pulmonologist and my neurologist the first week of june. I don't know what we are going to do. Getting rid of the bad side effects of higher pred was good and I'm not sorry I did it, but I'm finding out I opened Pandora's box. The sarc Minions are having a field day and chewing me up, I seriously don't know what to do. I use to have good days pain wise, I haven't in a long time, it's been like a steady downhill trip, I can't seem to find the top anymore. But hey, I shouldn't gripe, I don't have ALS, or some of the other horrible things some of my clients do.

Thanks for listening, and letting me vent; I couldn't have taken much more without letting some of it out. Always remember you are appreciated.

To: neurosarcoidosis Sent: Sat, May 28, 2011 12:25:05 AMSubject: RE: gotta exhale Connie, how long have you had this much pain? I know you've probably already told us, but bear with me--have you tried other drugs besides Lyrica? My best relief was from Neurontin & Cymbalta, but I had to quit the Neurontin when I had an odd little spell while driving & ended up breaking a telephone pole. Then I used just Cymbalta, but it didn't do enough, so we added Lyrica. That combo was almost as good as the Neurontin & Cymbalta. But then my dry eyes started getting much drier, and after some experimentation I realized that it was the Cymbalta, so I had to stop it. As bad as my feet hurt, the eyes were worse; like someone rubbing sandpaper in them. I only take 150 of Lyrica twice a day; I'm holding off on any increase as long as possible. I've told you about elevating the feet & having a little wire tent to hold the covers off. Some nights I have to put my feet up even higher; I'll either stack up pillows, or lie on the floor with my feet up on a chair, up higher than my head. That will help for awhile. I can't sleep on the floor, because the critters will want to kiss me too much, but it gives a little temporary relief. Another thing that sounds awful, but has actually helped me is capsaicin cream. it's made from hot peppers & it burns like the dickens when you apply it, but after a couple of days it does seem to help. It's also used for arthritis. This last time I bought a roll-on tube, because it's impossible to wash it off your hands & I didn't want to use new gloves every day. I hope that one of these suggestions helps, because I know how awful that pain is. That tells you how bad my leg/back pain are; it actually takes my mind off the neuropathic pain.Connie, you are probably already familiar with the American Chronic Pain Association. If not, here is their link: www.theacpa.orgUnder conditions A-Z you can find neuropathic pain, then on the right of that page are some coping suggestions. I've been thinking about doing the online pain log. I think I know what triggers worse episodes, but it would be interesting to actually track it & see if I'm aware of all the triggers. If nothing else, it may take our minds off the actual pain for awhile by keeping a chart! Well, I'm going to knock off here in a couple of minutes & get in my hot tub. My feet & leg are hurting more than usual, I think because I drove my son to work (2-hour round trip). I sincerely hope that you are able to get some relief, somehow. If you don't mind, I'll say some prayers for you. I really enjoyed the chat tonight; did that help take your mind off the pain for a bit?

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 27 May 2011 18:45:29 -0700Subject: gotta exhale

My neuropathy is hurting so bad I am having chest pain, and I'm getting nauseous. I feel like my feet are being burned, razorblade cut, and pulled apart all at once, then the muscle cramps start. The Lyrica side effects are too much to increase the dose anymore and still function at my job. I am not the type to sit and cry, but this has been this bad for way to long. I'm exhausted from lack of sleep, the pain won't let up, and the stabbing is so startling it has got my heart totally aggravated. My speech, and my memory has left for the holiday. I only have one claw left holding on the knot in the end of my rope. Thanks for listening I had to vent in writing, or scream at the time of my lungs; which the neighbors would take issue with. I appreciate you all.......connie

[Guest guest]

You guys are making my ex look like a prince! He was a jerk, but not a homicidal jerk!

Well, I got to go kayaking yesterday & it was so wonderful. I had been to a cookout first, and I got so hot--even in the shade--that I just couldn't stand it. Well, I did stand it, of course, but I was miserable. Then we got on the river & it was heavenly! Even when we drifted into the sun, I'd just take that cold river water & pour it on me. I usually capsize intentionally, but the river was a bit higher & faster than usual, and I was afraid I'd have trouble getting back into the kayak. Last year that happened, everybody was ahead of me, and I finally let the kayak go, turned on my back & backstroked down the river. The others caught the kayak for me & I got back in when I got into some shallower water. Just another modification I've had to make to compensate for my decreased muscle strength. But that's why I don't go kayaking alone anymore, which I hate, because it used to be one of my best stressbusters.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Tue, 31 May 2011 12:59:58 +0000Subject: RE: gotta exhale

Rose and Connie: thanks for the smiles; I envy you, Rose, your night-sky sleep Sounds wonderful; and Connie, how did you find my ex??? (Not the wool allergy, though I am allergic to codiene, but just overall . . .???WiN

To: Neurosarcoidosis From: conaugusta@...Date: Mon, 30 May 2011 17:25:34 -0700Subject: Re: gotta exhale

I got kind of tickled when I read about the woolen socks, another weird thing about me. I am so allergic to wool it swells up my airways in nothing flat, can we say asthma attack from the bad place. My "mean" ex used to look at me and tell me "all I'd have to do is give you cough syrup (I'm allergic to codiene) and wrap you in a wool blanket, nobody would ever figure it out" Note the word "ex"

To: neurosarcoidosis Sent: Sun, May 29, 2011 3:28:19 PMSubject: RE: gotta exhale , I have fallen sleep in my hot tub. I put my head in a little kid's swim ring, with one of those noodles under my knees & just float around in the tub, looking up at the night sky. I can't think of a better way to relax. Kayaking, of course! The river is low enough today, but I didn't sleep well last night & I'm about to fall asleep again (3:30 in the afternoon), so we might go tomorrow. I couldn't find any woolen sox in town, so will have to order them online, or get to knit them for me!

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Sun, 29 May 2011 13:12:11 +0000Subject: RE: gotta exhaleCan I say: "I feel your pain" with understanding at yourend, and without sounding/being overly facetious? I knw most of us with neuorsarc have the peripheral neuropathy and attendant pain -- and Rose, your finding of relief with hot/warm water, and heat, I, too, share. Many winter days here, as I am off work on disability, I ended up in our deep tub (no jets) for my afternoon nap. Only problem was my reading material often ended up soggy after it fell out of my hands. Only thng I never did get wet/ruin, thank goodness, was the cordless phone -- just a couple of near misses!PS--though alone in house at time, I was extremely careful about falling asleep in tub, and made sure someone knew where I was and to check on me regularly . .. I just fit in tub and hard to slip, but if anyone else tries this ensure you are either not alone, or have a means of preventing your head from slipping into the waterHope, Connie, you can find some relief from the pain and symptoms of this disease, without the pred; I am getting to the point where I am going to have to decide if the neurosarc is worse than the pred, or vice-versa. But, I do still have the remicaide to try and am hoping for the best there.Take care, all. in Niagara

To: neurosarcoidosis From: mamadogrose@...Date: Sun, 29 May 2011 03:43:28 -0400Subject: RE: gotta exhaleConnie, do you have access to a hot tub, or a deep bathtub? That often helps me more than the drugs. I can't use a regular bathtub anymore (can't get out without a couple of Marines to haul me up!). A shower doesn't do the trip. I have to let my legs go out in front of me. Right now I'm keeping the temp at 98-99 because my pregnant granddaughter is using the hot tub. That's actually warm enough for me now that the weather is warming up. I just sit in one of the corners with the jets to my back, hips & shoulders, with my legs out in front, sometimes I rest my knees on one of those foam noodles. I do some mile resistance exercises for my arms with sort foam pieces, then do some milk leg exercises. 10-15 min. does wonders for my feet. I either have a couple of rice sox warming in the microwave or a fleece blanket & sox warming in the dryer. Get out of that hot tob, dry off, get pj's on, hop in bed with my warm blanket, sox, and/or rice sox. If you don't have a hot tub, dry a regular tub if you are able to get out without any trouble. Make sure you have everything all ready, so that you don't get out of the tub, then have to walk/stand around for 30 min. before going to bed. It takes away most of the relief from the warm water. Now my son gave me one of those water foot massagers a few years ago. It was okay, but the vibration was uncomfortable, plus my feet were dependent, so it didn't really do the job.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 28 May 2011 22:22:57 -0700Subject: Re: gotta exhale

Thanks so much Rose, and I am always thankful for any prayers said on my behalf. I have stuck pretty much with the lyrica because of a couple of different things, side effects and trouble finding medicine I can actually take. Because of the chloroquine I can't mix some meds, I'm allergic to capsaisin, methotrexate, and immuran. I haven't tried Neurotin yet because of the dental problems it causes. Remicaid is off the table because of my heart. I can elevate my legs in bed, but I can't lay on the floor, I can't get up. I will look up the chronic pain sight, it sounds like a good idea, I didn't know there was a sight like that, thank you. One thing that is upping the game is the CIDP, it is getting worse and tearing me up, my heart has felt like it was trying to crawl out of my chest today, and the GammaGard IVIG doesn't seem to be lasting but about 2.5/3 weeks. I do the IVIG once a month.

I did enjoy the chat and it did help to escape for a little while till the Lyrica could kick in a little. I will see my pulmonologist and my neurologist the first week of june. I don't know what we are going to do. Getting rid of the bad side effects of higher pred was good and I'm not sorry I did it, but I'm finding out I opened Pandora's box. The sarc Minions are having a field day and chewing me up, I seriously don't know what to do. I use to have good days pain wise, I haven't in a long time, it's been like a steady downhill trip, I can't seem to find the top anymore. But hey, I shouldn't gripe, I don't have ALS, or some of the other horrible things some of my clients do.

Thanks for listening, and letting me vent; I couldn't have taken much more without letting some of it out. Always remember you are appreciated.

To: neurosarcoidosis Sent: Sat, May 28, 2011 12:25:05 AMSubject: RE: gotta exhale Connie, how long have you had this much pain? I know you've probably already told us, but bear with me--have you tried other drugs besides Lyrica? My best relief was from Neurontin & Cymbalta, but I had to quit the Neurontin when I had an odd little spell while driving & ended up breaking a telephone pole. Then I used just Cymbalta, but it didn't do enough, so we added Lyrica. That combo was almost as good as the Neurontin & Cymbalta. But then my dry eyes started getting much drier, and after some experimentation I realized that it was the Cymbalta, so I had to stop it. As bad as my feet hurt, the eyes were worse; like someone rubbing sandpaper in them. I only take 150 of Lyrica twice a day; I'm holding off on any increase as long as possible. I've told you about elevating the feet & having a little wire tent to hold the covers off. Some nights I have to put my feet up even higher; I'll either stack up pillows, or lie on the floor with my feet up on a chair, up higher than my head. That will help for awhile. I can't sleep on the floor, because the critters will want to kiss me too much, but it gives a little temporary relief. Another thing that sounds awful, but has actually helped me is capsaicin cream. it's made from hot peppers & it burns like the dickens when you apply it, but after a couple of days it does seem to help. It's also used for arthritis. This last time I bought a roll-on tube, because it's impossible to wash it off your hands & I didn't want to use new gloves every day. I hope that one of these suggestions helps, because I know how awful that pain is. That tells you how bad my leg/back pain are; it actually takes my mind off the neuropathic pain.Connie, you are probably already familiar with the American Chronic Pain Association. If not, here is their link: www.theacpa.orgUnder conditions A-Z you can find neuropathic pain, then on the right of that page are some coping suggestions. I've been thinking about doing the online pain log. I think I know what triggers worse episodes, but it would be interesting to actually track it & see if I'm aware of all the triggers. If nothing else, it may take our minds off the actual pain for awhile by keeping a chart! Well, I'm going to knock off here in a couple of minutes & get in my hot tub. My feet & leg are hurting more than usual, I think because I drove my son to work (2-hour round trip). I sincerely hope that you are able to get some relief, somehow. If you don't mind, I'll say some prayers for you. I really enjoyed the chat tonight; did that help take your mind off the pain for a bit?

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 27 May 2011 18:45:29 -0700Subject: gotta exhale

My neuropathy is hurting so bad I am having chest pain, and I'm getting nauseous. I feel like my feet are being burned, razorblade cut, and pulled apart all at once, then the muscle cramps start. The Lyrica side effects are too much to increase the dose anymore and still function at my job. I am not the type to sit and cry, but this has been this bad for way to long. I'm exhausted from lack of sleep, the pain won't let up, and the stabbing is so startling it has got my heart totally aggravated. My speech, and my memory has left for the holiday. I only have one claw left holding on the knot in the end of my rope. Thanks for listening I had to vent in writing, or scream at the time of my lungs; which the neighbors would take issue with. I appreciate you all.......connie

[Guest guest]

Connie, I'm so sorry, I've been there and it's no fun.  I switched from the Lyrica to Cymbalta and that seems to be working better for my nerve pain, the Lyrica was good, however I couldn't take it to late in the day, as I couldn't sleep, so I wasn't taking enough to really help with all the pain, and then I would wake up with terrible headaches, and for the most part I don't any more.  Maybe you should ask your Doctor about Cymbalta?

Hope you get some relief soon.  will keep you in my prayers. Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

My neuropathy is hurting so bad I am having chest pain, and I'm getting nauseous.  I feel like my feet are being burned, razorblade cut, and pulled apart all at once, then the muscle cramps start.  The Lyrica side effects are too much to increase the dose anymore and still function at my job.  I am not the type to sit and cry, but this has been this bad for way to long. I'm exhausted from lack of sleep, the pain won't let up, and the stabbing is so startling it has got my heart totally aggravated.  My speech, and my memory has left for the holiday.  I only have one claw left holding on the knot in the end of my rope.   Thanks for listening I had to vent in writing, or scream at the time of my lungs; which the neighbors would take

issue with.  I appreciate you all.......connie

[Guest guest]

Wow Rose that sounds like fun!  I was in Seattle all weekend, and for the most part it was cold, like 50s with high humidity, but beautiful, very green.  we took the Ferry to BC, and that was really neat, and the sun came out, only day it did, and I wanted to see and walk in a Castle, and it was a really a small castle,(more like a really big house, 3 stories)  lots of stairs, and I did them all, then I was hot and cranky, legs felt like a million pounds each.  But I did it.  My husbands a real trooper he pushed me all over, and we took the city buses, glad we went. 

Now if I could shake this cough that's been hanging on, I would feel better, just lack of energy. Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

You guys are making my ex look like a prince!  He was a jerk, but not a homicidal jerk!

 

Well, I got to go kayaking yesterday & it was so wonderful.  I had been to a cookout first, and I got so hot--even in the shade--that I just couldn't stand it.  Well, I did stand it, of course, but I was miserable.  Then we got on the river & it was heavenly!  Even when we drifted into the sun, I'd just take that cold river water & pour it on me.  I usually capsize intentionally, but the river was a bit higher & faster than usual, and I was afraid I'd have trouble getting back into the kayak.  Last year that happened, everybody was ahead of me, and I finally let the kayak go, turned on my back & backstroked down the river.  The others caught the kayak for me & I got back in when I got into some shallower water.  Just another modification I've had to make to compensate for my decreased muscle strength.  But that's why I don't go kayaking alone anymore, which I hate, because it used to be one of my best stressbusters.

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

 

To: neurosarcoidosis From: wluce50@...Date: Tue, 31 May 2011 12:59:58 +0000

Subject: RE: gotta exhale

Rose and Connie: thanks for the smiles; I envy you, Rose, your night-sky sleep Sounds wonderful; and Connie, how did you find my ex??? (Not the  wool allergy, though I am allergic to codiene, but just overall . . .???

WiN 

To: Neurosarcoidosis From: conaugusta@...Date: Mon, 30 May 2011 17:25:34 -0700

Subject: Re: gotta exhale

I got kind of tickled when I read about the woolen socks, another weird thing about me.  I am so allergic to wool it swells up my airways in nothing flat, can we say asthma attack from the bad place.  My " mean " ex used to look at me and tell me " all I'd have to do is give you cough syrup (I'm allergic to codiene) and wrap you in a wool blanket, nobody would ever figure it out "    Note the word " ex "

To: neurosarcoidosis

Sent: Sun, May 29, 2011 3:28:19 PMSubject: RE: gotta exhale  , I have fallen sleep in my hot tub.  I put my head in a little kid's swim ring, with one of those noodles under my knees & just float around in the tub, looking up at the night sky.  I can't think of a better way to relax.  Kayaking, of course!  The river is low enough today, but I didn't sleep well last night & I'm about to fall asleep again (3:30 in the afternoon), so we might go tomorrow.  I couldn't find any woolen sox in town, so will have to order them online, or get to knit them for me!

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

 

To: neurosarcoidosis From: wluce50@...Date: Sun, 29 May 2011 13:12:11 +0000

Subject: RE: gotta exhaleCan I say: " I feel  your pain " with understanding at yourend, and without sounding/being overly facetious? I knw most of us with neuorsarc have the peripheral neuropathy and attendant pain -- and Rose, your finding of relief with hot/warm water, and heat, I, too, share. Many winter days here, as I am off work on disability, I ended up in our deep tub (no jets) for my afternoon nap. Only problem was my reading material often ended up soggy after it fell out of my hands. Only thng I never did get wet/ruin, thank goodness, was the cordless phone -- just a couple of near misses!

PS--though alone in house at time, I was extremely careful about falling asleep in tub, and made sure someone knew where I was and to check on me regularly  . .. I just fit in tub and hard to slip, but if anyone else tries this ensure you are either not alone, or have a means of preventing your head from slipping into the water

Hope, Connie, you can find some relief from the pain and symptoms of this disease, without the pred; I am getting to the point where I am going to have to decide if the neurosarc is worse than the pred, or vice-versa. But, I do still have the remicaide to try and am hoping for the best there.

Take care, all. in Niagara 

To: neurosarcoidosis From: mamadogrose@...Date: Sun, 29 May 2011 03:43:28 -0400

Subject: RE: gotta exhaleConnie, do you have access to a hot tub, or a deep bathtub?  That often helps me more than the drugs.  I can't use a regular bathtub anymore (can't get out without a couple of Marines to haul me up!).  A shower doesn't do the trip.  I have to let my legs go out in front of me.  Right now I'm keeping the temp at 98-99 because my pregnant granddaughter is using the hot tub.  That's actually warm enough for me now that the weather is warming up.  I just sit in one of the corners with the jets to my back, hips & shoulders, with my legs out in front, sometimes I rest my knees on one of those foam noodles.  I do some mile resistance exercises for my arms with sort foam pieces, then do some milk leg exercises.  10-15 min. does wonders for my feet.  I either have a couple of rice sox warming in the microwave or a fleece blanket & sox warming in the dryer.  Get out of that hot tob, dry off, get pj's on, hop in bed with my warm blanket, sox, and/or rice sox.  If you don't have a hot tub, dry a regular tub if you are able to get out without any trouble.  Make sure you have everything all ready, so that you don't get out of the tub, then have to walk/stand around for 30 min. before going to bed.  It takes away most of the relief from the warm water.  Now my son gave me one of those water foot massagers a few years ago.  It was okay, but the vibration was uncomfortable, plus my feet were dependent, so it didn't really do the job.

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

 

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 28 May 2011 22:22:57 -0700

Subject: Re: gotta exhale

Thanks so much Rose, and I am always thankful for any prayers said on my behalf.  I have stuck pretty much with the lyrica because of a couple of different things, side effects and trouble finding medicine I can actually take.  Because of the chloroquine I can't mix some meds, I'm allergic to capsaisin, methotrexate, and immuran.  I haven't tried Neurotin yet because of the dental problems it causes.  Remicaid is off the table because of my heart.  I can elevate my legs in bed, but I can't lay on the floor, I can't get up.  I will look up the chronic pain sight, it sounds like a good idea, I didn't know there was a sight like that, thank you.  One thing that is upping the game is the CIDP, it is getting worse and tearing me up, my heart has felt like it was trying to crawl out of my chest today, and the GammaGard IVIG doesn't seem to be lasting but about 2.5/3 weeks.  I do the IVIG once a month. 

 

I did enjoy the chat and it did help to escape for a little while till the Lyrica could kick in a little.  I will see my pulmonologist and my neurologist the first week of june.  I don't know what we are going to do.  Getting rid of the bad side effects of higher pred was good and I'm not sorry I did it, but I'm finding out I opened Pandora's box.  The sarc Minions are having a field day and chewing me up, I seriously don't know what to do.  I use to have good days pain wise, I haven't in a long time, it's been like a steady downhill trip, I can't seem to find the top anymore.  But hey, I shouldn't gripe, I don't have ALS, or some of the other horrible things some of my clients do. 

 

Thanks for listening, and letting me vent; I couldn't have taken much more without letting some of it out.  Always remember you are appreciated.

To: neurosarcoidosis

Sent: Sat, May 28, 2011 12:25:05 AMSubject: RE: gotta exhale  Connie, how long have you had this much pain?  I know you've probably already told us, but bear with me--have you tried other drugs besides Lyrica?  My best relief was from Neurontin & Cymbalta, but I had to quit the Neurontin when I had an odd little spell while driving & ended up breaking a telephone pole.  Then I used just Cymbalta, but it didn't do enough, so we added Lyrica.  That combo was almost as good as the Neurontin & Cymbalta.  But then my dry eyes started getting much drier, and after some experimentation I realized that it was the Cymbalta, so I had to stop it.  As bad as my feet hurt, the eyes were worse; like someone rubbing sandpaper in them.  I only take 150 of Lyrica twice a day; I'm holding off on any increase as long as possible.  I've told you about elevating the feet & having a little wire tent to hold the covers off.  Some nights I have to put my feet up even higher; I'll either stack up pillows, or lie on the floor with my feet up on a chair, up higher than my head.  That will help for awhile.  I can't sleep on the floor, because the critters will want to kiss me too much, but it gives a little temporary relief.  Another thing that sounds awful, but has actually helped me is capsaicin cream.  it's made from hot peppers & it burns like the dickens when you apply it, but after a couple of days it does seem to help.  It's also used for arthritis.  This last time I bought a roll-on tube, because it's impossible to wash it off your hands & I didn't want to use new gloves every day.  I hope that one of these suggestions helps, because I know how awful that pain is.  That tells you how bad my leg/back pain are; it actually takes my mind off the neuropathic pain.

Connie, you are probably already familiar with the American Chronic Pain Association.  If not, here is their link: www.theacpa.orgUnder conditions A-Z you can find neuropathic pain, then on the right of that page are some coping suggestions.  I've been thinking about doing the online pain log.  I think I know what triggers worse episodes, but it would be interesting to actually track it & see if I'm aware of all the triggers.  If nothing else, it may take our minds off the actual pain for awhile by keeping a chart!  Well, I'm going to knock off here in a couple of minutes & get in my hot tub.  My feet & leg are hurting more than usual, I think because I drove my son to work (2-hour round trip).  I sincerely hope that you are able to get some relief, somehow.  If you don't mind, I'll say some prayers for you.  I really enjoyed the chat tonight; did that help take your mind off the pain for a bit?

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

 

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 27 May 2011 18:45:29 -0700

Subject: gotta exhale

My neuropathy is hurting so bad I am having chest pain, and I'm getting nauseous.  I feel like my feet are being burned, razorblade cut, and pulled apart all at once, then the muscle cramps start.  The Lyrica side effects are too much to increase the dose anymore and still function at my job.  I am not the type to sit and cry, but this has been this bad for way to long. I'm exhausted from lack of sleep, the pain won't let up, and the stabbing is so startling it has got my heart totally aggravated.  My speech, and my memory has left for the holiday.  I only have one claw left holding on the knot in the end of my rope.   Thanks for listening I had to vent in writing, or scream at the time of my lungs; which the neighbors would take issue with.  I appreciate you all.......connie

[Guest guest]

Just lucky I guess (I'm being a comedian now) I hope yours is an ex too

To: neurosarcoidosis Sent: Tue, May 31, 2011 8:59:58 AMSubject: RE: gotta exhale

Rose and Connie: thanks for the smiles; I envy you, Rose, your night-sky sleep Sounds wonderful; and Connie, how did you find my ex??? (Not the wool allergy, though I am allergic to codiene, but just overall . . .???WiN

To: Neurosarcoidosis From: conaugusta@...Date: Mon, 30 May 2011 17:25:34 -0700Subject: Re: gotta exhale

I got kind of tickled when I read about the woolen socks, another weird thing about me. I am so allergic to wool it swells up my airways in nothing flat, can we say asthma attack from the bad place. My "mean" ex used to look at me and tell me "all I'd have to do is give you cough syrup (I'm allergic to codiene) and wrap you in a wool blanket, nobody would ever figure it out" Note the word "ex"

To: neurosarcoidosis Sent: Sun, May 29, 2011 3:28:19 PMSubject: RE: gotta exhale , I have fallen sleep in my hot tub. I put my head in a little kid's swim ring, with one of those noodles under my knees & just float around in the tub, looking up at the night sky. I can't think of a better way to relax. Kayaking, of course! The river is low enough today, but I didn't sleep well last night & I'm about to fall asleep again (3:30 in the afternoon), so we might go tomorrow. I couldn't find any woolen sox in town, so will have to order them online, or get to knit them for me!

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Sun, 29 May 2011 13:12:11 +0000Subject: RE: gotta exhaleCan I say: "I feel your pain" with understanding at yourend, and without sounding/being overly facetious? I knw most of us with neuorsarc have the peripheral neuropathy and attendant pain -- and Rose, your finding of relief with hot/warm water, and heat, I, too, share. Many winter days here, as I am off work on disability, I ended up in our deep tub (no jets) for my afternoon nap. Only problem was my reading material often ended up soggy after it fell out of my hands. Only thng I never did get wet/ruin, thank goodness, was the cordless phone -- just a couple of near misses!PS--though alone in house at time, I was extremely careful about falling asleep in tub, and made sure someone knew where I was and to check on me regularly .

... I just fit in tub and hard to slip, but if anyone else tries this ensure you are either not alone, or have a means of preventing your head from slipping into the waterHope, Connie, you can find some relief from the pain and symptoms of this disease, without the pred; I am getting to the point where I am going to have to decide if the neurosarc is worse than the pred, or vice-versa. But, I do still have the remicaide to try and am hoping for the best there.Take care, all. in Niagara

To: neurosarcoidosis From: mamadogrose@...Date: Sun, 29 May 2011 03:43:28 -0400Subject: RE: gotta exhaleConnie, do you have access to a hot tub, or a deep bathtub? That often helps me more than the drugs. I can't use a regular bathtub anymore (can't get out without a couple of Marines to haul me up!). A shower doesn't do the trip. I have to let my legs go out in front of me. Right now I'm keeping the temp at 98-99 because my pregnant granddaughter is using the hot tub. That's actually warm enough for me now that the weather is warming up. I just sit in one of the corners with the jets to my back, hips & shoulders, with my legs out in front, sometimes I rest my knees on one of those foam noodles. I do some mile resistance exercises for my arms with sort foam pieces, then do some milk leg exercises. 10-15 min. does wonders for my

feet. I either have a couple of rice sox warming in the microwave or a fleece blanket & sox warming in the dryer. Get out of that hot tob, dry off, get pj's on, hop in bed with my warm blanket, sox, and/or rice sox. If you don't have a hot tub, dry a regular tub if you are able to get out without any trouble. Make sure you have everything all ready, so that you don't get out of the tub, then have to walk/stand around for 30 min. before going to bed. It takes away most of the relief from the warm water. Now my son gave me one of those water foot massagers a few years ago. It was okay, but the vibration was uncomfortable, plus my feet were dependent, so it didn't really do the job.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 28 May 2011 22:22:57 -0700Subject: Re: gotta exhale

Thanks so much Rose, and I am always thankful for any prayers said on my behalf. I have stuck pretty much with the lyrica because of a couple of different things, side effects and trouble finding medicine I can actually take. Because of the chloroquine I can't mix some meds, I'm allergic to capsaisin, methotrexate, and immuran. I haven't tried Neurotin yet because of the dental problems it causes. Remicaid is off the table because of my heart. I can elevate my legs in bed, but I can't lay on the floor, I can't get up. I will look up the chronic pain sight, it sounds like a good idea, I didn't know there was a sight like that, thank you. One thing that is upping the game is the CIDP, it is getting worse and tearing me up, my heart has felt like it was trying to crawl out of my chest today, and the GammaGard IVIG doesn't seem to be lasting but about 2.5/3 weeks. I do the IVIG once a month.

I did enjoy the chat and it did help to escape for a little while till the Lyrica could kick in a little. I will see my pulmonologist and my neurologist the first week of june. I don't know what we are going to do. Getting rid of the bad side effects of higher pred was good and I'm not sorry I did it, but I'm finding out I opened Pandora's box. The sarc Minions are having a field day and chewing me up, I seriously don't know what to do. I use to have good days pain wise, I haven't in a long time, it's been like a steady downhill trip, I can't seem to find the top anymore. But hey, I shouldn't gripe, I don't have ALS, or some of the other horrible things some of my clients do.

Thanks for listening, and letting me vent; I couldn't have taken much more without letting some of it out. Always remember you are appreciated.

To: neurosarcoidosis Sent: Sat, May 28, 2011 12:25:05 AMSubject: RE: gotta exhale Connie, how long have you had this much pain? I know you've probably already told us, but bear with me--have you tried other drugs besides Lyrica? My best relief was from Neurontin & Cymbalta, but I had to quit the Neurontin when I had an odd little spell while driving & ended up breaking a telephone pole. Then I used just Cymbalta, but it didn't do enough, so we added Lyrica. That combo was almost as good as the Neurontin & Cymbalta. But then my dry eyes started getting much drier, and after some experimentation I realized that it was the Cymbalta, so I had to stop it. As bad as my feet hurt, the eyes were worse; like someone rubbing sandpaper in them. I only take 150 of Lyrica twice a day; I'm holding off on any increase as long as possible. I've told you about elevating the feet & having a little wire tent to hold the covers off. Some nights I have to put my

feet up even higher; I'll either stack up pillows, or lie on the floor with my feet up on a chair, up higher than my head. That will help for awhile. I can't sleep on the floor, because the critters will want to kiss me too much, but it gives a little temporary relief. Another thing that sounds awful, but has actually helped me is capsaicin cream. it's made from hot peppers & it burns like the dickens when you apply it, but after a couple of days it does seem to help. It's also used for arthritis. This last time I bought a roll-on tube, because it's impossible to wash it off your hands & I didn't want to use new gloves every day. I hope that one of these suggestions helps, because I know how awful that pain is. That tells you how bad my leg/back pain are; it actually takes my mind off the neuropathic pain.Connie, you are probably already familiar with the American Chronic Pain

Association. If not, here is their link: www.theacpa.orgUnder conditions A-Z you can find neuropathic pain, then on the right of that page are some coping suggestions. I've been thinking about doing the online pain log. I think I know what triggers worse episodes, but it would be interesting to actually track it & see if I'm aware of all the triggers. If nothing else, it may take our minds off the actual pain for awhile by keeping a chart! Well, I'm going to knock off here in a couple of minutes & get in my hot tub. My feet & leg are hurting more than usual, I think because I drove my son to work (2-hour round trip). I sincerely hope that you are able to get some relief, somehow. If you don't mind, I'll say some prayers for you. I really enjoyed the chat tonight; did that help take your mind off the pain for a

bit?

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 27 May 2011 18:45:29 -0700Subject: gotta exhale

My neuropathy is hurting so bad I am having chest pain, and I'm getting nauseous. I feel like my feet are being burned, razorblade cut, and pulled apart all at once, then the muscle cramps start. The Lyrica side effects are too much to increase the dose anymore and still function at my job. I am not the type to sit and cry, but this has been this bad for way to long. I'm exhausted from lack of sleep, the pain won't let up, and the stabbing is so startling it has got my heart totally aggravated. My speech, and my memory has left for the holiday. I only have one claw left holding on the knot in the end of my rope. Thanks for listening I had to vent in writing, or scream at the time of my lungs; which the neighbors would take issue with. I appreciate you all.......connie

[Guest guest]

I have never tried that rose, I was always afraid it would flip over and hold my head under till I drowned. I know, crazy but it gave me the willy's. I am so glad you got to go and have some fun, it had to have felt great. The moments we get to do something we used to enjoy is fabulous, and you deserved a nice break. You ought to get somebody to make phone pictures, I bet your waterways are awesome.

To: neurosarcoidosis Sent: Wed, June 1, 2011 1:09:00 AMSubject: RE: gotta exhale

You guys are making my ex look like a prince! He was a jerk, but not a homicidal jerk! Well, I got to go kayaking yesterday & it was so wonderful. I had been to a cookout first, and I got so hot--even in the shade--that I just couldn't stand it. Well, I did stand it, of course, but I was miserable. Then we got on the river & it was heavenly! Even when we drifted into the sun, I'd just take that cold river water & pour it on me. I usually capsize intentionally, but the river was a bit higher & faster than usual, and I was afraid I'd have trouble getting back into the kayak. Last year that happened, everybody was ahead of me, and I finally let the kayak go, turned on my back & backstroked down the river. The others caught the kayak for me & I got back in when I got into some shallower water. Just another modification I've had to make to compensate for my decreased

muscle strength. But that's why I don't go kayaking alone anymore, which I hate, because it used to be one of my best stressbusters.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Tue, 31 May 2011 12:59:58 +0000Subject: RE: gotta exhaleRose and Connie: thanks for the smiles; I envy you, Rose, your night-sky sleep Sounds wonderful; and Connie, how did you find my ex??? (Not the wool allergy, though I am allergic to codiene, but just overall . . .???WiN

To: Neurosarcoidosis From: conaugusta@...Date: Mon, 30 May 2011 17:25:34 -0700Subject: Re: gotta exhale

I got kind of tickled when I read about the woolen socks, another weird thing about me. I am so allergic to wool it swells up my airways in nothing flat, can we say asthma attack from the bad place. My "mean" ex used to look at me and tell me "all I'd have to do is give you cough syrup (I'm allergic to codiene) and wrap you in a wool blanket, nobody would ever figure it out" Note the word "ex"

To: neurosarcoidosis Sent: Sun, May 29, 2011 3:28:19 PMSubject: RE: gotta exhale , I have fallen sleep in my hot tub. I put my head in a little kid's swim ring, with one of those noodles under my knees & just float around in the tub, looking up at the night sky. I can't think of a better way to relax. Kayaking, of course! The river is low enough today, but I didn't sleep well last night & I'm about to fall asleep again (3:30 in the afternoon), so we might go tomorrow. I couldn't find any woolen sox in town, so will have to order them online, or get to knit them for me!

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Sun, 29 May 2011 13:12:11 +0000Subject: RE: gotta exhaleCan I say: "I feel your pain" with understanding at yourend, and without sounding/being overly facetious? I knw most of us with neuorsarc have the peripheral neuropathy and attendant pain -- and Rose, your finding of relief with hot/warm water, and heat, I, too, share. Many winter days here, as I am off work on disability, I ended up in our deep tub (no jets) for my afternoon nap. Only problem was my reading material often ended up soggy after it fell out of my hands. Only thng I never did get wet/ruin, thank goodness, was the cordless phone -- just a couple of near misses!PS--though alone in house at time, I was extremely careful about falling asleep in tub, and made sure someone knew where I was and to check on me regularly .

... I just fit in tub and hard to slip, but if anyone else tries this ensure you are either not alone, or have a means of preventing your head from slipping into the waterHope, Connie, you can find some relief from the pain and symptoms of this disease, without the pred; I am getting to the point where I am going to have to decide if the neurosarc is worse than the pred, or vice-versa. But, I do still have the remicaide to try and am hoping for the best there.Take care, all. in Niagara

To: neurosarcoidosis From: mamadogrose@...Date: Sun, 29 May 2011 03:43:28 -0400Subject: RE: gotta exhaleConnie, do you have access to a hot tub, or a deep bathtub? That often helps me more than the drugs. I can't use a regular bathtub anymore (can't get out without a couple of Marines to haul me up!). A shower doesn't do the trip. I have to let my legs go out in front of me. Right now I'm keeping the temp at 98-99 because my pregnant granddaughter is using the hot tub. That's actually warm enough for me now that the weather is warming up. I just sit in one of the corners with the jets to my back, hips & shoulders, with my legs out in front, sometimes I rest my knees on one of those foam noodles. I do some mile resistance exercises for my arms with sort foam pieces, then do some milk leg exercises. 10-15 min. does wonders for my

feet. I either have a couple of rice sox warming in the microwave or a fleece blanket & sox warming in the dryer. Get out of that hot tob, dry off, get pj's on, hop in bed with my warm blanket, sox, and/or rice sox. If you don't have a hot tub, dry a regular tub if you are able to get out without any trouble. Make sure you have everything all ready, so that you don't get out of the tub, then have to walk/stand around for 30 min. before going to bed. It takes away most of the relief from the warm water. Now my son gave me one of those water foot massagers a few years ago. It was okay, but the vibration was uncomfortable, plus my feet were dependent, so it didn't really do the job.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 28 May 2011 22:22:57 -0700Subject: Re: gotta exhale

Thanks so much Rose, and I am always thankful for any prayers said on my behalf. I have stuck pretty much with the lyrica because of a couple of different things, side effects and trouble finding medicine I can actually take. Because of the chloroquine I can't mix some meds, I'm allergic to capsaisin, methotrexate, and immuran. I haven't tried Neurotin yet because of the dental problems it causes. Remicaid is off the table because of my heart. I can elevate my legs in bed, but I can't lay on the floor, I can't get up. I will look up the chronic pain sight, it sounds like a good idea, I didn't know there was a sight like that, thank you. One thing that is upping the game is the CIDP, it is getting worse and tearing me up, my heart has felt like it was trying to crawl out of my chest today, and the GammaGard IVIG doesn't seem to be lasting but about 2.5/3 weeks. I do the IVIG once a month.

I did enjoy the chat and it did help to escape for a little while till the Lyrica could kick in a little. I will see my pulmonologist and my neurologist the first week of june. I don't know what we are going to do. Getting rid of the bad side effects of higher pred was good and I'm not sorry I did it, but I'm finding out I opened Pandora's box. The sarc Minions are having a field day and chewing me up, I seriously don't know what to do. I use to have good days pain wise, I haven't in a long time, it's been like a steady downhill trip, I can't seem to find the top anymore. But hey, I shouldn't gripe, I don't have ALS, or some of the other horrible things some of my clients do.

Thanks for listening, and letting me vent; I couldn't have taken much more without letting some of it out. Always remember you are appreciated.

To: neurosarcoidosis Sent: Sat, May 28, 2011 12:25:05 AMSubject: RE: gotta exhale Connie, how long have you had this much pain? I know you've probably already told us, but bear with me--have you tried other drugs besides Lyrica? My best relief was from Neurontin & Cymbalta, but I had to quit the Neurontin when I had an odd little spell while driving & ended up breaking a telephone pole. Then I used just Cymbalta, but it didn't do enough, so we added Lyrica. That combo was almost as good as the Neurontin & Cymbalta. But then my dry eyes started getting much drier, and after some experimentation I realized that it was the Cymbalta, so I had to stop it. As bad as my feet hurt, the eyes were worse; like someone rubbing sandpaper in them. I only take 150 of Lyrica twice a day; I'm holding off on any increase as long as possible. I've told you about elevating the feet & having a little wire tent to hold the covers off. Some nights I have to put my

feet up even higher; I'll either stack up pillows, or lie on the floor with my feet up on a chair, up higher than my head. That will help for awhile. I can't sleep on the floor, because the critters will want to kiss me too much, but it gives a little temporary relief. Another thing that sounds awful, but has actually helped me is capsaicin cream. it's made from hot peppers & it burns like the dickens when you apply it, but after a couple of days it does seem to help. It's also used for arthritis. This last time I bought a roll-on tube, because it's impossible to wash it off your hands & I didn't want to use new gloves every day. I hope that one of these suggestions helps, because I know how awful that pain is. That tells you how bad my leg/back pain are; it actually takes my mind off the neuropathic pain.Connie, you are probably already familiar with the American Chronic Pain

Association. If not, here is their link: www.theacpa.orgUnder conditions A-Z you can find neuropathic pain, then on the right of that page are some coping suggestions. I've been thinking about doing the online pain log. I think I know what triggers worse episodes, but it would be interesting to actually track it & see if I'm aware of all the triggers. If nothing else, it may take our minds off the actual pain for awhile by keeping a chart! Well, I'm going to knock off here in a couple of minutes & get in my hot tub. My feet & leg are hurting more than usual, I think because I drove my son to work (2-hour round trip). I sincerely hope that you are able to get some relief, somehow. If you don't mind, I'll say some prayers for you. I really enjoyed the chat tonight; did that help take your mind off the pain for a

bit?

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 27 May 2011 18:45:29 -0700Subject: gotta exhale

My neuropathy is hurting so bad I am having chest pain, and I'm getting nauseous. I feel like my feet are being burned, razorblade cut, and pulled apart all at once, then the muscle cramps start. The Lyrica side effects are too much to increase the dose anymore and still function at my job. I am not the type to sit and cry, but this has been this bad for way to long. I'm exhausted from lack of sleep, the pain won't let up, and the stabbing is so startling it has got my heart totally aggravated. My speech, and my memory has left for the holiday. I only have one claw left holding on the knot in the end of my rope. Thanks for listening I had to vent in writing, or scream at the time of my lungs; which the neighbors would take issue with. I appreciate you all.......connie

[Guest guest]

Thanks Marla, I see him in a few days (or his PA) and we have got to get this straight. I'm sitting here typing with my feet on fire. I can't take the Lyrica during the day, and I have to take it early evening or I am wiped out at work the next day. I appreciate the prayers more than you know.

To: Neurosarcoidosis Sent: Wed, June 1, 2011 12:59:19 PMSubject: Re: gotta exhale

Connie, I'm so sorry, I've been there and it's no fun. I switched from the Lyrica to Cymbalta and that seems to be working better for my nerve pain, the Lyrica was good, however I couldn't take it to late in the day, as I couldn't sleep, so I wasn't taking enough to really help with all the pain, and then I would wake up with terrible headaches, and for the most part I don't any more. Maybe you should ask your Doctor about Cymbalta? Hope you get some relief soon. will keep you in my prayers. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

My neuropathy is hurting so bad I am having chest pain, and I'm getting nauseous. I feel like my feet are being burned, razorblade cut, and pulled apart all at once, then the muscle cramps start. The Lyrica side effects are too much to increase the dose anymore and still function at my job. I am not the type to sit and cry, but this has been this bad for way to long. I'm exhausted from lack of sleep, the pain won't let up, and the stabbing is so startling it has got my heart totally aggravated. My speech, and my memory has left for the holiday. I only have one claw left holding on the knot in the end of my rope. Thanks for listening I had to vent in writing, or scream at the time of my lungs; which the neighbors would take issue with. I appreciate you all.......connie

[Guest guest]

Marla I am so proud you had a great outing. I know you were super tired, but I bet your felt great....GooooGirlllll

To: Neurosarcoidosis Sent: Thu, June 2, 2011 6:00:06 PMSubject: Re: gotta exhale

Wow Rose that sounds like fun! I was in Seattle all weekend, and for the most part it was cold, like 50s with high humidity, but beautiful, very green. we took the Ferry to BC, and that was really neat, and the sun came out, only day it did, and I wanted to see and walk in a Castle, and it was a really a small castle,(more like a really big house, 3 stories) lots of stairs, and I did them all, then I was hot and cranky, legs felt like a million pounds each. But I did it. My husbands a real trooper he pushed me all over, and we took the city buses, glad we went. Now if I could shake this cough that's been hanging on, I would feel better, just lack of energy. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." -

Irish Proverb

You guys are making my ex look like a prince! He was a jerk, but not a homicidal jerk! Well, I got to go kayaking yesterday & it was so wonderful. I had been to a cookout first, and I got so hot--even in the shade--that I just couldn't stand it. Well, I did stand it, of course, but I was miserable. Then we got on the river & it was heavenly! Even when we drifted into the sun, I'd just take that cold river water & pour it on me. I usually capsize intentionally, but the river was a bit higher & faster than usual, and I was afraid I'd have trouble getting back into the kayak. Last year that happened, everybody was ahead of me, and I finally let the kayak go, turned on my back & backstroked down the river. The others caught the kayak for me & I got back in when I got into some shallower water. Just another modification I've had to make to compensate for my decreased

muscle strength. But that's why I don't go kayaking alone anymore, which I hate, because it used to be one of my best stressbusters.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Tue, 31 May 2011 12:59:58 +0000

Subject: RE: gotta exhaleRose and Connie: thanks for the smiles; I envy you, Rose, your night-sky sleep Sounds wonderful; and Connie, how did you find my ex??? (Not the wool allergy, though I am allergic to codiene, but just overall . . .???WiN

To: Neurosarcoidosis From: conaugusta@...Date: Mon, 30 May 2011 17:25:34 -0700Subject: Re: gotta exhale

I got kind of tickled when I read about the woolen socks, another weird thing about me. I am so allergic to wool it swells up my airways in nothing flat, can we say asthma attack from the bad place. My "mean" ex used to look at me and tell me "all I'd have to do is give you cough syrup (I'm allergic to codiene) and wrap you in a wool blanket, nobody would ever figure it out" Note the word "ex"

To: neurosarcoidosis Sent: Sun, May 29, 2011 3:28:19 PMSubject: RE: gotta exhale , I have fallen sleep in my hot tub. I put my head in a little kid's swim ring, with one of those noodles under my knees & just float around in the tub, looking up at the night sky. I can't think of a better way to relax. Kayaking, of course! The river is low enough today, but I didn't sleep well last night & I'm about to fall asleep again (3:30 in the afternoon), so we might go tomorrow. I couldn't find any woolen sox in town, so will have to order them online, or get to knit them for me!

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Sun, 29 May 2011 13:12:11 +0000Subject: RE: gotta exhaleCan I say: "I feel your pain" with understanding at yourend, and without sounding/being overly facetious? I knw most of us with neuorsarc have the peripheral neuropathy and attendant pain -- and Rose, your finding of relief with hot/warm water, and heat, I, too, share. Many winter days here, as I am off work on disability, I ended up in our deep tub (no jets) for my afternoon nap. Only problem was my reading material often ended up soggy after it fell out of my hands. Only thng I never did get wet/ruin, thank goodness,

was the cordless phone -- just a couple of near misses!PS--though alone in house at time, I was extremely careful about falling asleep in tub, and made sure someone knew where I was and to check on me regularly . .. I just fit in tub and hard to slip, but if anyone else tries this ensure you are either not alone, or have a means of preventing your head from slipping into the waterHope, Connie, you can find some relief from the pain and symptoms of this disease, without the pred; I am getting to the point where I am going to have to decide if the neurosarc is worse than the pred, or vice-versa. But, I do still have the remicaide to try and am hoping for the best there.Take care, all. in Niagara

To: neurosarcoidosis From: mamadogrose@...Date: Sun, 29 May 2011 03:43:28 -0400Subject: RE: gotta exhaleConnie, do you have access to a hot tub, or a deep bathtub? That often helps me more than the drugs. I can't use a regular bathtub anymore (can't get out without a couple of Marines to haul me up!). A shower doesn't do the trip. I have to let my legs go out in front of me. Right now I'm keeping the temp at 98-99 because my pregnant granddaughter is using the hot tub. That's actually warm enough for me now that the weather is warming up. I just sit in one of the corners with the jets to my back, hips

& shoulders, with my legs out in front, sometimes I rest my knees on one of those foam noodles. I do some mile resistance exercises for my arms with sort foam pieces, then do some milk leg exercises. 10-15 min. does wonders for my feet. I either have a couple of rice sox warming in the microwave or a fleece blanket & sox warming in the dryer. Get out of that hot tob, dry off, get pj's on, hop in bed with my warm blanket, sox, and/or rice sox. If you don't have a hot tub, dry a regular tub if you are able to get out without any trouble. Make sure you have everything all ready, so that you don't get out of the tub, then have to walk/stand around for 30 min. before going to bed. It takes away most of the relief from the warm water. Now my son gave me one of those water foot massagers a few years ago. It was okay, but the vibration was uncomfortable, plus my feet were dependent, so it didn't

really do the job.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 28 May 2011 22:22:57 -0700Subject: Re: gotta exhale

Thanks so much Rose, and I am always thankful for any prayers said on my behalf. I have stuck pretty much with the lyrica because of a couple of different things, side effects and trouble finding medicine I can actually take. Because of the chloroquine I can't mix some meds, I'm allergic to capsaisin, methotrexate, and immuran. I haven't tried Neurotin yet because of the dental problems it causes. Remicaid is off the table because of my heart. I can elevate my legs in bed, but I can't lay on the floor, I can't get up. I will look up the chronic pain sight, it sounds like a good idea, I didn't know there was a sight like that, thank you. One thing that is upping the game is the CIDP, it is getting worse and tearing me up, my heart has felt like it was trying to crawl out of my chest today, and the GammaGard IVIG doesn't seem to be lasting but about 2.5/3 weeks. I do the IVIG once a month.

I did enjoy the chat and it did help to escape for a little while till the Lyrica could kick in a little. I will see my pulmonologist and my neurologist the first week of june. I don't know what we are going to do. Getting rid of the bad side effects of higher pred was good and I'm not sorry I did it, but I'm finding out I opened Pandora's box. The sarc Minions are having a field day and chewing me up, I seriously don't know what to do. I use to have good days pain wise, I haven't in a long time, it's been like a steady downhill trip, I can't seem to find the top anymore. But hey, I shouldn't gripe, I don't have ALS, or some of the other horrible things some of my clients do.

Thanks for listening, and letting me vent; I couldn't have taken much more without letting some of it out. Always remember you are appreciated.

To: neurosarcoidosis Sent: Sat, May 28, 2011 12:25:05 AMSubject: RE: gotta exhale Connie, how long have you had this much pain? I know you've probably already told us, but bear with me--have you tried other drugs besides Lyrica? My best relief was from Neurontin & Cymbalta, but I had to quit the Neurontin when I had an odd little spell while driving & ended up breaking a telephone pole. Then I used just Cymbalta, but it didn't do enough, so we added Lyrica. That combo was almost as good as the Neurontin & Cymbalta. But then my dry eyes started getting much drier, and after some experimentation I realized that it was the Cymbalta, so I had to stop it. As bad as my feet hurt, the eyes were worse; like someone rubbing sandpaper in them. I only take 150 of Lyrica twice a day; I'm holding off on any increase as long as possible. I've told you about elevating the feet & having a little wire tent to hold the covers off. Some nights I have to put my feet up even

higher; I'll either stack up pillows, or lie on the floor with my feet up on a chair, up higher than my head. That will help for awhile. I can't sleep on the floor, because the critters will want to kiss me too much, but it gives a little temporary relief. Another thing that sounds awful, but has actually helped me is capsaicin cream. it's made from hot peppers & it burns like the dickens when you apply it, but after a couple of days it does seem to help. It's also used for arthritis. This last time I bought a roll-on tube, because it's impossible to wash it off your hands & I didn't want to use new gloves every day. I hope that one of these suggestions helps, because I know how awful that pain is. That tells you how bad my leg/back pain are; it actually takes my mind off the neuropathic pain.Connie, you are probably already familiar with the American Chronic Pain Association. If not,

here is their link: www.theacpa.orgUnder conditions A-Z you can find neuropathic pain, then on the right of that page are some coping suggestions. I've been thinking about doing the online pain log. I think I know what triggers worse episodes, but it would be interesting to actually track it & see if I'm aware of all the triggers. If nothing else, it may take our minds off the actual pain for awhile by keeping a chart! Well, I'm going to knock off here in a couple of minutes & get in my hot tub. My feet & leg are hurting more than usual, I think because I drove my son to work (2-hour round trip). I sincerely hope that you are able to get some relief, somehow. If you don't mind, I'll say some prayers for you. I really enjoyed the chat tonight; did that help take your mind off the pain for a bit?

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 27 May 2011 18:45:29 -0700Subject: gotta exhale

My neuropathy is hurting so bad I am having chest pain, and I'm getting nauseous. I feel like my feet are being burned, razorblade cut, and pulled apart all at once, then the muscle cramps start. The Lyrica side effects are too much to increase the dose anymore and still function at my job. I am not the type to sit and cry, but this has been this bad for way to long. I'm exhausted from lack of sleep, the pain won't let up, and the stabbing is so startling it has got my heart totally aggravated. My speech, and my memory has left for the holiday. I only have one claw left holding on the knot in the end of my rope. Thanks for listening I had to vent in writing, or scream at the time of my lungs; which the neighbors would take issue with. I appreciate you all.......connie

[Guest guest]

Connie, the kayaks we use are not like the ones on tv going down the rapids.

These are kind of flat with dents for your butt & feet. If you do capsize, which

is hard, there is no place to get trapped. The river we use is a pretty lazy

river (anybody remember the old song, " Up a lazy river...... " ). Now canoes are

another story. I don't use canoes anymore because they require more arm strength

than I have, plus kayaks are just more fun. My older daughter, Theresa, loves

kayaking, but won't get in a canoe after she got stuck under one several years

ago. She was in about 2 feet of water, but the current was pushing the canoe

against a tree & she couldn't get out. Some guys helped her. She tells everyone

that she was drownng, but I could hear her hollering downstream. I know it was

scary though. I can't remember if you are on Facebook. If so I have a photo

album of us kayaking. I think there is one pic of me falling out of a kayak in

the NS photos. I hope to go again before my back surgery.

RE: gotta exhale

 

You guys are making my ex look like a prince!  He was a jerk, but not a

homicidal jerk!

 

Well, I got to go kayaking yesterday & it was so wonderful.  I had been to a

cookout first, and I got so hot--even in the shade--that I just couldn't stand

it.  Well, I did stand it, of course, but I was miserable.  Then we got on the

river & it was heavenly!  Even when we drifted into the sun, I'd just take that

[Guest guest]

Marla. Sounds like a great time. Sometimes we know we'll pay for it, but it's

worth it. i went by ferry to from Vancouver years ago, before I got

sick. I loved it.

Re: gotta exhale

Wow Rose that sounds like fun! I was in Seattle all weekend, and for the

most part it was cold, like 50s with high humidity, but beautiful, very

green. we took the Ferry to BC, and that was really neat, and the

sun came out, only day it did, and I wanted to see and walk in a Castle, and

it was a really a small castle,(more like a really big house, 3 stories)

lots of stairs, and I did them all, then I was hot and cranky, legs felt

like a million pounds each. But I did it. My husbands a real trooper he

pushed me all over, and we took the city buses, glad we went.

Now if I could shake this cough that's been hanging on, I would feel better,

just lack of energy.

Marla

" Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk

less, say more; Love more, and all good things will be yours. " - Irish

Proverb* *

On Tue, May 31, 2011 at 11:09 PM, Rose wrote:

>

>

> You guys are making my ex look like a prince! He was a jerk, but not a

> homicidal jerk!

>

[Guest guest]

Connie: one "ex" but I do have a current husband -- was on my own (with one son) for 23 years then met who I call an extremely brave man -- that will be 10 years ago in mid-July, and we just celebrated our 6th anniversary. So, I know life can change for the better, even when you don;t expect it or aren't looking . ..

Only challenge is -- and I've mentioned this before -- it's this husband who is facing a challenging heart surgery to replace his aorta and the aortic valve; that's after (if) the surgeon can "treat" the massive aneurysm in his aorta, which is attached to the breastbone; surgeon actually told him he is a walking time-bomb for this thing to pop. And, he cannot do traditional open heart surgery -- he has to ensure heart/aneurysm drained while is on heart/lung machine before he begins to operate to prevent him bleeding out.

He is a priority case, but the waiting is tough; we are hoping to hear today about a surgery date and if not today, then I am certain we will know Monday. And, the operation should be sometime in the next two weeks . ..

I have no stress in my life, right?

Cheers,

To: Neurosarcoidosis From: conaugusta@...Date: Thu, 2 Jun 2011 17:23:05 -0700Subject: Re: gotta exhale

Just lucky I guess (I'm being a comedian now) I hope yours is an ex too

To: neurosarcoidosis Sent: Tue, May 31, 2011 8:59:58 AMSubject: RE: gotta exhale

Rose and Connie: thanks for the smiles; I envy you, Rose, your night-sky sleep Sounds wonderful; and Connie, how did you find my ex??? (Not the wool allergy, though I am allergic to codiene, but just overall . . .???WiN

To: Neurosarcoidosis From: conaugusta@...Date: Mon, 30 May 2011 17:25:34 -0700Subject: Re: gotta exhale

I got kind of tickled when I read about the woolen socks, another weird thing about me. I am so allergic to wool it swells up my airways in nothing flat, can we say asthma attack from the bad place. My "mean" ex used to look at me and tell me "all I'd have to do is give you cough syrup (I'm allergic to codiene) and wrap you in a wool blanket, nobody would ever figure it out" Note the word "ex"

To: neurosarcoidosis Sent: Sun, May 29, 2011 3:28:19 PMSubject: RE: gotta exhale , I have fallen sleep in my hot tub. I put my head in a little kid's swim ring, with one of those noodles under my knees & just float around in the tub, looking up at the night sky. I can't think of a better way to relax. Kayaking, of course! The river is low enough today, but I didn't sleep well last night & I'm about to fall asleep again (3:30 in the afternoon), so we might go tomorrow. I couldn't find any woolen sox in town, so will have to order them online, or get to knit them for me!

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Sun, 29 May 2011 13:12:11 +0000Subject: RE: gotta exhaleCan I say: "I feel your pain" with understanding at yourend, and without sounding/being overly facetious? I knw most of us with neuorsarc have the peripheral neuropathy and attendant pain -- and Rose, your finding of relief with hot/warm water, and heat, I, too, share. Many winter days here, as I am off work on disability, I ended up in our deep tub (no jets) for my afternoon nap. Only problem was my reading material often ended up soggy after it fell out of my hands. Only thng I never did get wet/ruin, thank goodness, was the cordless phone -- just a couple of near misses!PS--though alone in house at time, I was extremely careful about falling asleep in tub, and made sure someone knew where I was and to check on me regularly . .. I just fit in tub and hard to slip, but if anyone else tries this ensure you are either not alone, or have a means of preventing your head from slipping into the waterHope, Connie, you can find some relief from the pain and symptoms of this disease, without the pred; I am getting to the point where I am going to have to decide if the neurosarc is worse than the pred, or vice-versa. But, I do still have the remicaide to try and am hoping for the best there.Take care, all. in Niagara

To: neurosarcoidosis From: mamadogrose@...Date: Sun, 29 May 2011 03:43:28 -0400Subject: RE: gotta exhaleConnie, do you have access to a hot tub, or a deep bathtub? That often helps me more than the drugs. I can't use a regular bathtub anymore (can't get out without a couple of Marines to haul me up!). A shower doesn't do the trip. I have to let my legs go out in front of me. Right now I'm keeping the temp at 98-99 because my pregnant granddaughter is using the hot tub. That's actually warm enough for me now that the weather is warming up. I just sit in one of the corners with the jets to my back, hips & shoulders, with my legs out in front, sometimes I rest my knees on one of those foam noodles. I do some mile resistance exercises for my arms with sort foam pieces, then do some milk leg exercises. 10-15 min. does wonders for my feet. I either have a couple of rice sox warming in the microwave or a fleece blanket & sox warming in the dryer. Get out of that hot tob, dry off, get pj's on, hop in bed with my warm blanket, sox, and/or rice sox. If you don't have a hot tub, dry a regular tub if you are able to get out without any trouble. Make sure you have everything all ready, so that you don't get out of the tub, then have to walk/stand around for 30 min. before going to bed. It takes away most of the relief from the warm water. Now my son gave me one of those water foot massagers a few years ago. It was okay, but the vibration was uncomfortable, plus my feet were dependent, so it didn't really do the job.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 28 May 2011 22:22:57 -0700Subject: Re: gotta exhale

Thanks so much Rose, and I am always thankful for any prayers said on my behalf. I have stuck pretty much with the lyrica because of a couple of different things, side effects and trouble finding medicine I can actually take. Because of the chloroquine I can't mix some meds, I'm allergic to capsaisin, methotrexate, and immuran. I haven't tried Neurotin yet because of the dental problems it causes. Remicaid is off the table because of my heart. I can elevate my legs in bed, but I can't lay on the floor, I can't get up. I will look up the chronic pain sight, it sounds like a good idea, I didn't know there was a sight like that, thank you. One thing that is upping the game is the CIDP, it is getting worse and tearing me up, my heart has felt like it was trying to crawl out of my chest today, and the GammaGard IVIG doesn't seem to be lasting but about 2.5/3 weeks. I do the IVIG once a month.

I did enjoy the chat and it did help to escape for a little while till the Lyrica could kick in a little. I will see my pulmonologist and my neurologist the first week of june. I don't know what we are going to do. Getting rid of the bad side effects of higher pred was good and I'm not sorry I did it, but I'm finding out I opened Pandora's box. The sarc Minions are having a field day and chewing me up, I seriously don't know what to do. I use to have good days pain wise, I haven't in a long time, it's been like a steady downhill trip, I can't seem to find the top anymore. But hey, I shouldn't gripe, I don't have ALS, or some of the other horrible things some of my clients do.

Thanks for listening, and letting me vent; I couldn't have taken much more without letting some of it out. Always remember you are appreciated.

To: neurosarcoidosis Sent: Sat, May 28, 2011 12:25:05 AMSubject: RE: gotta exhale Connie, how long have you had this much pain? I know you've probably already told us, but bear with me--have you tried other drugs besides Lyrica? My best relief was from Neurontin & Cymbalta, but I had to quit the Neurontin when I had an odd little spell while driving & ended up breaking a telephone pole. Then I used just Cymbalta, but it didn't do enough, so we added Lyrica. That combo was almost as good as the Neurontin & Cymbalta. But then my dry eyes started getting much drier, and after some experimentation I realized that it was the Cymbalta, so I had to stop it. As bad as my feet hurt, the eyes were worse; like someone rubbing sandpaper in them. I only take 150 of Lyrica twice a day; I'm holding off on any increase as long as possible. I've told you about elevating the feet & having a little wire tent to hold the covers off. Some nights I have to put my feet up even higher; I'll either stack up pillows, or lie on the floor with my feet up on a chair, up higher than my head. That will help for awhile. I can't sleep on the floor, because the critters will want to kiss me too much, but it gives a little temporary relief. Another thing that sounds awful, but has actually helped me is capsaicin cream. it's made from hot peppers & it burns like the dickens when you apply it, but after a couple of days it does seem to help. It's also used for arthritis. This last time I bought a roll-on tube, because it's impossible to wash it off your hands & I didn't want to use new gloves every day. I hope that one of these suggestions helps, because I know how awful that pain is. That tells you how bad my leg/back pain are; it actually takes my mind off the neuropathic pain.Connie, you are probably already familiar with the American Chronic Pain Association. If not, here is their link: www.theacpa.orgUnder conditions A-Z you can find neuropathic pain, then on the right of that page are some coping suggestions. I've been thinking about doing the online pain log. I think I know what triggers worse episodes, but it would be interesting to actually track it & see if I'm aware of all the triggers. If nothing else, it may take our minds off the actual pain for awhile by keeping a chart! Well, I'm going to knock off here in a couple of minutes & get in my hot tub. My feet & leg are hurting more than usual, I think because I drove my son to work (2-hour round trip). I sincerely hope that you are able to get some relief, somehow. If you don't mind, I'll say some prayers for you. I really enjoyed the chat tonight; did that help take your mind off the pain for a bit?

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 27 May 2011 18:45:29 -0700Subject: gotta exhale

My neuropathy is hurting so bad I am having chest pain, and I'm getting nauseous. I feel like my feet are being burned, razorblade cut, and pulled apart all at once, then the muscle cramps start. The Lyrica side effects are too much to increase the dose anymore and still function at my job. I am not the type to sit and cry, but this has been this bad for way to long. I'm exhausted from lack of sleep, the pain won't let up, and the stabbing is so startling it has got my heart totally aggravated. My speech, and my memory has left for the holiday. I only have one claw left holding on the knot in the end of my rope. Thanks for listening I had to vent in writing, or scream at the time of my lungs; which the neighbors would take issue with. I appreciate you all.......connie

[Guest guest]

, I can't believe they are making your husband wait, when my father in law got the same thing, they took him right into surgery.  I don't understand the waiting??  Marla

" Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Connie: one  " ex " but I do have a current husband -- was on my own (with one son) for 23 years then met who I call an extremely brave man -- that will be 10 years ago in mid-July, and we just celebrated our 6th anniversary. So, I know life can change for the better, even when you don;t expect it or aren't looking . ..

Only challenge is -- and I've mentioned this before -- it's this husband who is facing a challenging heart surgery to replace his aorta and the aortic valve; that's after (if) the surgeon can " treat " the massive aneurysm in his aorta, which is attached to the breastbone; surgeon actually told him he is a walking time-bomb for this thing to pop. And, he cannot do traditional open heart surgery -- he has to ensure heart/aneurysm drained while is on heart/lung machine before he begins to operate to prevent him bleeding out.

He is a priority case, but the waiting is tough; we are hoping to hear today about a surgery date and if not today, then I am certain we will know Monday. And, the operation should be sometime in the next two weeks . ..

I have no stress in my life, right?

Cheers,

 

To: Neurosarcoidosis From: conaugusta@...Date: Thu, 2 Jun 2011 17:23:05 -0700

Subject: Re: gotta exhale

Just lucky I guess (I'm being a comedian now)    I hope yours is an ex too

To: neurosarcoidosis

Sent: Tue, May 31, 2011 8:59:58 AMSubject: RE: gotta exhale 

Rose and Connie: thanks for the smiles; I envy you, Rose, your night-sky sleep Sounds wonderful; and Connie, how did you find my ex??? (Not the  wool allergy, though I am allergic to codiene, but just overall . . .???

WiN 

To: Neurosarcoidosis From: conaugusta@...Date: Mon, 30 May 2011 17:25:34 -0700

Subject: Re: gotta exhale

I got kind of tickled when I read about the woolen socks, another weird thing about me.  I am so allergic to wool it swells up my airways in nothing flat, can we say asthma attack from the bad place.  My " mean " ex used to look at me and tell me " all I'd have to do is give you cough syrup (I'm allergic to codiene) and wrap you in a wool blanket, nobody would ever figure it out "    Note the word " ex "

To: neurosarcoidosis

Sent: Sun, May 29, 2011 3:28:19 PMSubject: RE: gotta exhale  , I have fallen sleep in my hot tub.  I put my head in a little kid's swim ring, with one of those noodles under my knees & just float around in the tub, looking up at the night sky.  I can't think of a better way to relax.  Kayaking, of course!  The river is low enough today, but I didn't sleep well last night & I'm about to fall asleep again (3:30 in the afternoon), so we might go tomorrow.  I couldn't find any woolen sox in town, so will have to order them online, or get to knit them for me!

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

 

To: neurosarcoidosis From: wluce50@...Date: Sun, 29 May 2011 13:12:11 +0000

Subject: RE: gotta exhaleCan I say: " I feel  your pain " with understanding at yourend, and without sounding/being overly facetious? I knw most of us with neuorsarc have the peripheral neuropathy and attendant pain -- and Rose, your finding of relief with hot/warm water, and heat, I, too, share. Many winter days here, as I am off work on disability, I ended up in our deep tub (no jets) for my afternoon nap. Only problem was my reading material often ended up soggy after it fell out of my hands. Only thng I never did get wet/ruin, thank goodness, was the cordless phone -- just a couple of near misses!

PS--though alone in house at time, I was extremely careful about falling asleep in tub, and made sure someone knew where I was and to check on me regularly  . .. I just fit in tub and hard to slip, but if anyone else tries this ensure you are either not alone, or have a means of preventing your head from slipping into the water

Hope, Connie, you can find some relief from the pain and symptoms of this disease, without the pred; I am getting to the point where I am going to have to decide if the neurosarc is worse than the pred, or vice-versa. But, I do still have the remicaide to try and am hoping for the best there.

Take care, all. in Niagara 

To: neurosarcoidosis From: mamadogrose@...Date: Sun, 29 May 2011 03:43:28 -0400

Subject: RE: gotta exhaleConnie, do you have access to a hot tub, or a deep bathtub?  That often helps me more than the drugs.  I can't use a regular bathtub anymore (can't get out without a couple of Marines to haul me up!).  A shower doesn't do the trip.  I have to let my legs go out in front of me.  Right now I'm keeping the temp at 98-99 because my pregnant granddaughter is using the hot tub.  That's actually warm enough for me now that the weather is warming up.  I just sit in one of the corners with the jets to my back, hips & shoulders, with my legs out in front, sometimes I rest my knees on one of those foam noodles.  I do some mile resistance exercises for my arms with sort foam pieces, then do some milk leg exercises.  10-15 min. does wonders for my feet.  I either have a couple of rice sox warming in the microwave or a fleece blanket & sox warming in the dryer.  Get out of that hot tob, dry off, get pj's on, hop in bed with my warm blanket, sox, and/or rice sox.  If you don't have a hot tub, dry a regular tub if you are able to get out without any trouble.  Make sure you have everything all ready, so that you don't get out of the tub, then have to walk/stand around for 30 min. before going to bed.  It takes away most of the relief from the warm water.  Now my son gave me one of those water foot massagers a few years ago.  It was okay, but the vibration was uncomfortable, plus my feet were dependent, so it didn't really do the job.

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

 

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 28 May 2011 22:22:57 -0700

Subject: Re: gotta exhale

Thanks so much Rose, and I am always thankful for any prayers said on my behalf.  I have stuck pretty much with the lyrica because of a couple of different things, side effects and trouble finding medicine I can actually take.  Because of the chloroquine I can't mix some meds, I'm allergic to capsaisin, methotrexate, and immuran.  I haven't tried Neurotin yet because of the dental problems it causes.  Remicaid is off the table because of my heart.  I can elevate my legs in bed, but I can't lay on the floor, I can't get up.  I will look up the chronic pain sight, it sounds like a good idea, I didn't know there was a sight like that, thank you.  One thing that is upping the game is the CIDP, it is getting worse and tearing me up, my heart has felt like it was trying to crawl out of my chest today, and the GammaGard IVIG doesn't seem to be lasting but about 2.5/3 weeks.  I do the IVIG once a month. 

 

I did enjoy the chat and it did help to escape for a little while till the Lyrica could kick in a little.  I will see my pulmonologist and my neurologist the first week of june.  I don't know what we are going to do.  Getting rid of the bad side effects of higher pred was good and I'm not sorry I did it, but I'm finding out I opened Pandora's box.  The sarc Minions are having a field day and chewing me up, I seriously don't know what to do.  I use to have good days pain wise, I haven't in a long time, it's been like a steady downhill trip, I can't seem to find the top anymore.  But hey, I shouldn't gripe, I don't have ALS, or some of the other horrible things some of my clients do. 

 

Thanks for listening, and letting me vent; I couldn't have taken much more without letting some of it out.  Always remember you are appreciated.

To: neurosarcoidosis

Sent: Sat, May 28, 2011 12:25:05 AMSubject: RE: gotta exhale  Connie, how long have you had this much pain?  I know you've probably already told us, but bear with me--have you tried other drugs besides Lyrica?  My best relief was from Neurontin & Cymbalta, but I had to quit the Neurontin when I had an odd little spell while driving & ended up breaking a telephone pole.  Then I used just Cymbalta, but it didn't do enough, so we added Lyrica.  That combo was almost as good as the Neurontin & Cymbalta.  But then my dry eyes started getting much drier, and after some experimentation I realized that it was the Cymbalta, so I had to stop it.  As bad as my feet hurt, the eyes were worse; like someone rubbing sandpaper in them.  I only take 150 of Lyrica twice a day; I'm holding off on any increase as long as possible.  I've told you about elevating the feet & having a little wire tent to hold the covers off.  Some nights I have to put my feet up even higher; I'll either stack up pillows, or lie on the floor with my feet up on a chair, up higher than my head.  That will help for awhile.  I can't sleep on the floor, because the critters will want to kiss me too much, but it gives a little temporary relief.  Another thing that sounds awful, but has actually helped me is capsaicin cream.  it's made from hot peppers & it burns like the dickens when you apply it, but after a couple of days it does seem to help.  It's also used for arthritis.  This last time I bought a roll-on tube, because it's impossible to wash it off your hands & I didn't want to use new gloves every day.  I hope that one of these suggestions helps, because I know how awful that pain is.  That tells you how bad my leg/back pain are; it actually takes my mind off the neuropathic pain.

Connie, you are probably already familiar with the American Chronic Pain Association.  If not, here is their link: www.theacpa.orgUnder conditions A-Z you can find neuropathic pain, then on the right of that page are some coping suggestions.  I've been thinking about doing the online pain log.  I think I know what triggers worse episodes, but it would be interesting to actually track it & see if I'm aware of all the triggers.  If nothing else, it may take our minds off the actual pain for awhile by keeping a chart!  Well, I'm going to knock off here in a couple of minutes & get in my hot tub.  My feet & leg are hurting more than usual, I think because I drove my son to work (2-hour round trip).  I sincerely hope that you are able to get some relief, somehow.  If you don't mind, I'll say some prayers for you.  I really enjoyed the chat tonight; did that help take your mind off the pain for a bit?

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

 

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 27 May 2011 18:45:29 -0700

Subject: gotta exhale

My neuropathy is hurting so bad I am having chest pain, and I'm getting nauseous.  I feel like my feet are being burned, razorblade cut, and pulled apart all at once, then the muscle cramps start.  The Lyrica side effects are too much to increase the dose anymore and still function at my job.  I am not the type to sit and cry, but this has been this bad for way to long. I'm exhausted from lack of sleep, the pain won't let up, and the stabbing is so startling it has got my heart totally aggravated.  My speech, and my memory has left for the holiday.  I only have one claw left holding on the knot in the end of my rope.   Thanks for listening I had to vent in writing, or scream at the time of my lungs; which the neighbors would take issue with.  I appreciate you all.......connie

[Guest guest]

Oh that sounds neat, No I have never seen the kind of kayak you are talking about. I've only seen the drown monsters. I think what your talking about would be fun. I don't live far from the big St 's River. It's beautiful and other than a face paced current, no big rocks, no white water, and no water falls. I can not imagine how scared your daughter must have been, I would have been breaking glass screaming.

I'm not on facebook, maybe one of my daughters can look it up so i can see the pictures. Hope you get to go back real soon.

To: "conaugusta@..." ; "Neurosarcoidosis " <Neurosarcoidosis >Sent: Thu, June 2, 2011 10:25:55 PMSubject: Re: gotta exhaleConnie, the kayaks we use are not like the ones on tv going down the rapids. These are kind of flat with dents for your butt & feet. If you do capsize, which is hard, there is no place to get trapped. The river we use is a pretty lazy river (anybody remember the old song, "Up a lazy river......"). Now canoes are another story. I don't use canoes anymore because they require more arm strength than I have, plus kayaks are just more fun. My older daughter, Theresa, loves kayaking, but won't

get in a canoe after she got stuck under one several years ago. She was in about 2 feet of water, but the current was pushing the canoe against a tree & she couldn't get out. Some guys helped her. She tells everyone that she was drownng, but I could hear her hollering downstream. I know it was scary though. I can't remember if you are on Facebook. If so I have a photo album of us kayaking. I think there is one pic of me falling out of a kayak in the NS photos. I hope to go again before my back surgery. RE: gotta exhale You guys are making my ex look like a prince! He was a jerk, but not a homicidal

jerk! Well, I got to go kayaking yesterday & it was so wonderful. I had been to a cookout first, and I got so hot--even in the shade--that I just couldn't stand it. Well, I did stand it, of course, but I was miserable. Then we got on the river & it was heavenly! Even when we drifted into the sun, I'd just take that------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database