Re: neuropathic pain

[Guest guest]

I have the neuro pain and numbness. From my waist down I hardly have feeling. My grandkids were being silly one time and put a piece of one of their toys on my chair when I stood up. when I sat down I had no idea it was there and why they were all laughing. Scared them a bit, they don't do that anymore.

I also go through bouts where I swear someone is sticking a hat pin in me. Different places different times. Yep the heat is the answer. This is a really strange thing we have here. I try to understand it but I don't. lol Go figure.

I get mega UTI's and heart burn from all the pills I am forced to take. I try to deal with everything without complaining too much. Seems the only one who understands any of this is my sweet man. He keeps the kids knowing what is happening and NEVER makes me feel bad if I just rest all day.

All this and I had to move to my own place because he doesn't like my kids and is quite a hermit. We live about 4 blocks away from each other but he is not rid of me. I love him dearly but I need my children and grandchildren. He has no kids so he doesn't understand the bond.

Anyway we are ok with all this. If I need to go someplace I call him and he comes running. (well walking, he is 69 after all.) lol

Anyway I was only going to say something about the numbness and stabbing pain. ARGH side path.

Thanks for listening.

Jackie

Re: neuropathic pain

l have just about as many of the symptoms Rose described and a couple more, I get this feeling like I have water running down my arms, it's not so much painful as annoying, however after a while it starts to burn, I don't know if it's because I keep wiping at it, like as if I could make the sensation go away. I have found that aspirin liquid that I rub on, really does help. It doesn't help my deep pain. I get stabbing pain all over, I mean grab it and sometimes double me up, then it goes away as fast as it comes, and some days, it'll pick one area, and just keep stabbing me in the same area, heat held close helps. Neuro pain is so strange, there are so many ways it can affect a person, and it can be short lived or stick around for awhile. I deal with a lot of numbing area's, really a lot, my left side for the most part is numb, the more I do the more numb it feels. Try the aspirin cream, it comes in a tube with a sponge end, and kind of watery, but for the surface pain, it helps. Heat is my friend, but if I get too much heat or over heated that's not good either. But cold is not my friend, cold makes me hurt. OK, that's my 2 cents. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

Mitch, my neuropathy takes many forms, including feeling like knives sticking my feet, to where it really hurts to walk. Other times it feels like my feet will explode & I can hardly stand to have anything touch my feet, including my socks, even tho they are really loose socks. That sensation comes from having my feet dependent too long, so I carry a folding camp stool everywhere I go, to put my feet up. I've also felt like a crab was biting my toes--just the big toes. That's really painful, but doesn't last long. Along with the pain I have numbness. If I've had to drive too much, it feels like there are thick pieces of foam rubber on the bottoms of my feet, so that it's difficult to tell how hard I'm pressing the brake or gas pedal, but at the same time it hurts. Like your pain, it's hard to explain. It sounds crazy. The worst thing for me is to get stuck in a traffic jam on the freeway--stop & go, stop & go--I just cannot stand it, but I have to. Sometimes I cry, sometimes I cuss, I always beg God to get that traffic moving so that I can turn on the cruise control. In addition to all these sensations I periodically get an intense itch that is almost worse than the pain. Nothing relieves it; it's a "hot" itch, if that makes any sense. Like the crab, it doesn't last more than a few minutes, at least so far. All of these sensations have progressed gradually over 8-9 years & started with the feeling that I had pieces of tape stuck on the bottom of my feet. So maybe your pain is not neuropathic, but I never knew neuropathic pain could take so many forms until it happened to me. After researching it, I've learned that many people have different symptoms, depending on which nerves are affected. I've been blessed with both small & large fiber neuropathy--hit the jackpot, I guess. Sorry about the rambling & I hope your mystery pain doesn't return. All of this information is for the group, not necessarily for you. For anyone with neuropathic pain, or wondering if you have it, there is very good info at www.theacpa.org. This is the American Chronic Pain Association & they have wonderful info & resources. On the homepage, there is a place to click Conditions A-Z, then click on neuropathic pain or peripheral neuropathy; or any others that you need info on. At the bottom of the peripheral neuropathy page are links to the Mayo Clinic site & NINDS.NIH, National Institute of Neurological Disorders and Stroke/National Institute of Health. The NINDS site has a lot more info.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Arizona sound great right now, Wisconsin winters really ........ New to this site and have a question regarding intake of dairy, my friend has been advised not to use dairy by her Dr. Is it because of the histamine problem or something else?To: Neurosarcoidosis Sent: Sun, January 9, 2011 7:23:17 PMSubject: Re: neuropathic pain I'm wondering if anyone had tried Light Relief or something like it? i am thinking about ordering

it. The pain from the cold is too much for me and when i try new meds they seem to give me side effects. I wonder if moving to Arizona or another warm place, in the winter would help. Right now i am not 'dancing'...but trying to stay warm. the cold goes right to the core of my being and i am feeling paralyzed and not getting much done. I still have my tree up. We bought a PS3 with Move for Christmas and I have been smashing bugs on Let's start the Party. It's about all the exercise i can do this time of year. ...and it's fun! p.s. i bought my cats a dvd that they watch on the tv...w/squirrels, birds, bugs and fish. they watch it, too! Life may not always be the party we hoped for, but while we're here we might as well dance! Mitch, my neuropathy takes many forms, including feeling like knives sticking my feet, to where it really hurts to walk. Other times it feels like my feet will explode & I can hardly stand to have anything touch my feet, including my socks, even tho they are really loose socks. That sensation comes from having my feet dependent

too long, so I carry a folding camp stool everywhere I go, to put my feet up. I've also felt like a crab was biting my toes--just the big toes. That's really painful, but doesn't last long. Along with the pain I have numbness. If I've had to drive too much, it feels like there are thick pieces of foam rubber on the bottoms of my feet, so that it's difficult to tell how hard I'm pressing the brake or gas pedal, but at the same time it hurts. Like your pain, it's hard to explain. It sounds crazy. The worst thing for me is to get stuck in a traffic jam on the freeway--stop & go, stop & go--I just cannot stand it, but I have to. Sometimes I cry, sometimes I cuss, I always beg God to get that traffic moving so that I can turn on the cruise control. In addition to all these sensations I periodically get an intense itch that is almost worse than the pain. Nothing relieves it; it's a "hot"

itch, if that makes any sense. Like the crab, it doesn't last more than a few minutes, at least so far. All of these sensations have progressed gradually over 8-9 years & started with the feeling that I had pieces of tape stuck on the bottom of my feet. So maybe your pain is not neuropathic, but I never knew neuropathic pain could take so many forms until it happened to me. After researching it, I've learned that many people have different symptoms, depending on which nerves are affected. I've been blessed with both small & large fiber neuropathy--hit the jackpot, I guess. Sorry about the rambling & I hope your mystery pain doesn't return. All of this information is for the group, not necessarily for you. For anyone with neuropathic pain, or wondering if you have it, there is very good info at www.theacpa.org. This is

the American Chronic Pain Association & they have wonderful info & resources. On the homepage, there is a place to click Conditions A-Z, then click on neuropathic pain or peripheral neuropathy; or any others that you need info on. At the bottom of the peripheral neuropathy page are links to the Mayo Clinic site & NINDS.NIH, National Institute of Neurological Disorders and Stroke/National Institute of Health. The NINDS site has a lot more info. Ramblin' RoseModerator A merry heart is

good medicine. Proverbs 17:22

[Guest guest]

Another thing that helps nerve pain, if you can stand it, is capsaicin. It's a cream made of hot peppers. It burns like the dickens when you rub it on (wear gloves unless you also have neuropathy in your hands), but then relieves the pain for quite awhile. I'd actually forgotten about it; I used it several years ago, then stopped when the meds helped so much. But I think I'll try it again since the Lyrica isn't helping as much. Especially at night, when I can't sleep because of my feet, might be worth a shot to try the capsaicin again. I'll get some next time I go to WalMart! I'll let y'all know how it goes.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

To: Neurosarcoidosis From: mebramer@...Date: Sun, 9 Jan 2011 13:26:06 -0700Subject: Re: neuropathic pain

l have just about as many of the symptoms Rose described and a couple more, I get this feeling like I have water running down my arms, it's not so much painful as annoying, however after a while it starts to burn, I don't know if it's because I keep wiping at it, like as if I could make the sensation go away. I have found that aspirin liquid that I rub on, really does help. It doesn't help my deep pain. I get stabbing pain all over, I mean grab it and sometimes double me up, then it goes away as fast as it comes, and some days, it'll pick one area, and just keep stabbing me in the same area, heat held close helps. Neuro pain is so strange, there are so many ways it can affect a person, and it can be short lived or stick around for awhile. I deal with a lot of numbing area's, really a lot, my left side for the most part is numb, the more I do the more numb it feels. Try the aspirin cream, it comes in a tube with a sponge end, and kind of watery, but for the surface pain, it helps. Heat is my friend, but if I get too much heat or over heated that's not good either. But cold is not my friend, cold makes me hurt. OK, that's my 2 cents. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

Mitch, my neuropathy takes many forms, including feeling like knives sticking my feet, to where it really hurts to walk. Other times it feels like my feet will explode & I can hardly stand to have anything touch my feet, including my socks, even tho they are really loose socks. That sensation comes from having my feet dependent too long, so I carry a folding camp stool everywhere I go, to put my feet up. I've also felt like a crab was biting my toes--just the big toes. That's really painful, but doesn't last long. Along with the pain I have numbness. If I've had to drive too much, it feels like there are thick pieces of foam rubber on the bottoms of my feet, so that it's difficult to tell how hard I'm pressing the brake or gas pedal, but at the same time it hurts. Like your pain, it's hard to explain. It sounds crazy. The worst thing for me is to get stuck in a traffic jam on the freeway--stop & go, stop & go--I just cannot stand it, but I have to. Sometimes I cry, sometimes I cuss, I always beg God to get that traffic moving so that I can turn on the cruise control. In addition to all these sensations I periodically get an intense itch that is almost worse than the pain. Nothing relieves it; it's a "hot" itch, if that makes any sense. Like the crab, it doesn't last more than a few minutes, at least so far. All of these sensations have progressed gradually over 8-9 years & started with the feeling that I had pieces of tape stuck on the bottom of my feet. So maybe your pain is not neuropathic, but I never knew neuropathic pain could take so many forms until it happened to me. After researching it, I've learned that many people have different symptoms, depending on which nerves are affected. I've been blessed with both small & large fiber neuropathy--hit the jackpot, I guess. Sorry about the rambling & I hope your mystery pain doesn't return. All of this information is for the group, not necessarily for you. For anyone with neuropathic pain, or wondering if you have it, there is very good info at www.theacpa.org. This is the American Chronic Pain Association & they have wonderful info & resources. On the homepage, there is a place to click Conditions A-Z, then click on neuropathic pain or peripheral neuropathy; or any others that you need info on. At the bottom of the peripheral neuropathy page are links to the Mayo Clinic site & NINDS.NIH, National Institute of Neurological Disorders and Stroke/National Institute of Health. The NINDS site has a lot more info.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Jackie, he sounds like a pretty good guy. If he doesn't like kids, but will still help you with them, that's great.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: shadowme810@...Date: Sun, 9 Jan 2011 16:14:04 -0600Subject: Re: neuropathic pain

I have the neuro pain and numbness. From my waist down I hardly have feeling. My grandkids were being silly one time and put a piece of one of their toys on my chair when I stood up. when I sat down I had no idea it was there and why they were all laughing. Scared them a bit, they don't do that anymore.

I also go through bouts where I swear someone is sticking a hat pin in me. Different places different times. Yep the heat is the answer. This is a really strange thing we have here. I try to understand it but I don't. lol Go figure.

I get mega UTI's and heart burn from all the pills I am forced to take. I try to deal with everything without complaining too much. Seems the only one who understands any of this is my sweet man. He keeps the kids knowing what is happening and NEVER makes me feel bad if I just rest all day.

All this and I had to move to my own place because he doesn't like my kids and is quite a hermit. We live about 4 blocks away from each other but he is not rid of me. I love him dearly but I need my children and grandchildren. He has no kids so he doesn't understand the bond.

Anyway we are ok with all this. If I need to go someplace I call him and he comes running. (well walking, he is 69 after all.) lol

Anyway I was only going to say something about the numbness and stabbing pain. ARGH side path.

Thanks for listening.

Jackie

Re: neuropathic pain

l have just about as many of the symptoms Rose described and a couple more, I get this feeling like I have water running down my arms, it's not so much painful as annoying, however after a while it starts to burn, I don't know if it's because I keep wiping at it, like as if I could make the sensation go away. I have found that aspirin liquid that I rub on, really does help. It doesn't help my deep pain. I get stabbing pain all over, I mean grab it and sometimes double me up, then it goes away as fast as it comes, and some days, it'll pick one area, and just keep stabbing me in the same area, heat held close helps. Neuro pain is so strange, there are so many ways it can affect a person, and it can be short lived or stick around for awhile. I deal with a lot of numbing area's, really a lot, my left side for the most part is numb, the more I do the more numb it feels. Try the aspirin cream, it comes in a tube with a sponge end, and kind of watery, but for the surface pain, it helps. Heat is my friend, but if I get too much heat or over heated that's not good either. But cold is not my friend, cold makes me hurt. OK, that's my 2 cents. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

Mitch, my neuropathy takes many forms, including feeling like knives sticking my feet, to where it really hurts to walk. Other times it feels like my feet will explode & I can hardly stand to have anything touch my feet, including my socks, even tho they are really loose socks. That sensation comes from having my feet dependent too long, so I carry a folding camp stool everywhere I go, to put my feet up. I've also felt like a crab was biting my toes--just the big toes. That's really painful, but doesn't last long. Along with the pain I have numbness. If I've had to drive too much, it feels like there are thick pieces of foam rubber on the bottoms of my feet, so that it's difficult to tell how hard I'm pressing the brake or gas pedal, but at the same time it hurts. Like your pain, it's hard to explain. It sounds crazy. The worst thing for me is to get stuck in a traffic jam on the freeway--stop & go, stop & go--I just cannot stand it, but I have to. Sometimes I cry, sometimes I cuss, I always beg God to get that traffic moving so that I can turn on the cruise control. In addition to all these sensations I periodically get an intense itch that is almost worse than the pain. Nothing relieves it; it's a "hot" itch, if that makes any sense. Like the crab, it doesn't last more than a few minutes, at least so far. All of these sensations have progressed gradually over 8-9 years & started with the feeling that I had pieces of tape stuck on the bottom of my feet. So maybe your pain is not neuropathic, but I never knew neuropathic pain could take so many forms until it happened to me. After researching it, I've learned that many people have different symptoms, depending on which nerves are affected. I've been blessed with both small & large fiber neuropathy--hit the jackpot, I guess. Sorry about the rambling & I hope your mystery pain doesn't return. All of this information is for the group, not necessarily for you. For anyone with neuropathic pain, or wondering if you have it, there is very good info at www.theacpa.org. This is the American Chronic Pain Association & they have wonderful info & resources. On the homepage, there is a place to click Conditions A-Z, then click on neuropathic pain or peripheral neuropathy; or any others that you need info on. At the bottom of the peripheral neuropathy page are links to the Mayo Clinic site & NINDS.NIH, National Institute of Neurological Disorders and Stroke/National Institute of Health. The NINDS site has a lot more info.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

I've heard about that from some of Rheumatoid Arthritis people.  I'm not sure I can take the burning, but it might be worth a try, I bet my husband would use it, as he is starting to get some Arthritis now, it's big in his family not so much in mine.  My  mother is 89 and only complains about her hip, wouldn't that be nice.

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

Another thing that helps nerve pain, if you can stand it, is capsaicin.  It's a cream made of hot peppers.  It burns like the dickens when you rub it on (wear gloves unless you also have neuropathy in your hands), but then relieves the pain for quite awhile.  I'd actually forgotten about it; I used it several years ago, then stopped when the meds helped so much.  But I think I'll try it again since the Lyrica isn't helping as much.  Especially at night, when I can't sleep because of my feet, might be worth a shot to try the capsaicin again.  I'll get some next time I go to WalMart! I'll let y'all know how it goes.

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22 

 

It's not that life is so short-------It's that we wait so long to begin. 

(attributed to Wooden, among others)  

To: Neurosarcoidosis From: mebramer@...Date: Sun, 9 Jan 2011 13:26:06 -0700

Subject: Re: neuropathic pain

l have just about as many of the symptoms Rose described and a couple more, I get this feeling like I have water running down my arms, it's not so much painful as annoying, however after a while it starts to burn, I don't know if it's because I keep wiping at it, like as if I could make the sensation go away.  I have found that aspirin liquid that I rub on, really does help.  It doesn't help my deep pain.  I get stabbing pain all over, I mean grab it and sometimes double me up, then it goes away as fast as it comes, and some days, it'll pick one area, and just keep stabbing me in the same area, heat held close helps. 

Neuro pain is so strange, there are so many ways it can affect a person, and it can be short lived or stick around for awhile. I deal with a lot of numbing area's, really a lot, my left side for the most part is numb, the more I do the more numb it feels. 

Try the aspirin cream, it comes in a tube with a sponge end, and kind of watery, but for the surface pain, it helps.  Heat is my friend, but if I get too much heat or over heated that's not good either.  But cold is not my friend, cold makes me hurt.  

OK, that's my 2 cents.   MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

Mitch, my neuropathy takes many forms, including feeling like knives sticking my feet, to where it really hurts to walk.  Other times it feels like my feet will explode & I can hardly stand to have anything touch my feet, including my socks, even tho they are really loose socks.  That sensation comes from having my feet dependent too long, so I carry a folding camp stool everywhere I go, to put my feet up.  I've also felt like a crab was biting my toes--just the big toes.  That's really painful, but doesn't last long.  Along with the pain I have numbness.  If I've had to drive too much, it feels like there are thick pieces of foam rubber on the bottoms of my feet, so that it's difficult to tell how hard I'm pressing the brake or gas pedal, but at the same time it hurts.  Like your pain, it's hard to explain.  It sounds crazy.  The worst thing for me is to get stuck in a traffic jam on the freeway--stop & go, stop & go--I just cannot stand it, but I have to.  Sometimes I cry, sometimes I cuss, I always beg God to get that traffic moving so that I can turn on the cruise control.  In addition to all these sensations I periodically get an intense itch that is almost worse than the pain.  Nothing relieves it; it's a " hot " itch, if that makes any sense.  Like the crab, it doesn't last more than a few minutes, at least so far.  All of these sensations have progressed gradually over 8-9 years & started with the feeling that I had pieces of tape stuck on the bottom of my feet.  So maybe your pain is not neuropathic, but I never knew neuropathic pain could take so many forms until it happened to me.  After researching it, I've learned that many people have different symptoms, depending on which nerves are affected.  I've been blessed with both small & large fiber neuropathy--hit the jackpot, I guess.  Sorry about the rambling & I hope your mystery pain doesn't return.  All of this information is for the group, not necessarily for you.  For anyone with neuropathic pain, or wondering if you have it, there is very good info at www.theacpa.org.  This is the American Chronic Pain Association & they have wonderful info & resources.  On the homepage, there is a place to click Conditions   A-Z, then click on neuropathic pain or peripheral neuropathy; or any others that you need info on.  At the bottom of the peripheral neuropathy page are links to the Mayo Clinic site & NINDS.NIH,  National Institute of Neurological Disorders and Stroke/National Institute of Health.  The NINDS site has a lot more info.

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22