Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 I have a very difficult time exercising, although I try to take walks a few days a week. If I do any type of aerobic exercise, not only is it painful, but it makes me sick to my stomach. Supposedly, you can work up to being able to exercise by starting out at 4 or 5 minutes of exercise, then 10, then 15, and so forth. I don't have the stamina to even try that. Pam Re: a couple of odd thingsdominie Date: Tuesday, October 28, 2008, 10:43 PM Grrr. Oh, how cruel! That doc doesn't have a clue!!!!! Lyricadoesn't work for everyone and has terrible side effects for many. Go tohttp://www.fms- help.com/ doctors.htm - it's for shell shocked FMS patients to read after being devastatedby a doctor's visit! I remember when my FMS was at its worst (1980's) http://www.fms- help.com/ interview. htmthat a doc told me to sign up for a gym at the hospital. I did so andjoined an aerobics class. The young lady who was leading the classwas named "Inga" - a beautiful Swedish gal who I think had springs inher legs! She was doing all this jumping around and had incrediblestamina! I am totally uncoordinated and had severe FMS. I ended upon the floor with an injured back. Others in the class weren't doingso well either - one very large lady jumped right out of her tank top.HA!!!!! (If we didn't laugh sometimes, we would cry!)Dom>> I've had a very similar situation with a Rheumo and was told thatsince I can't tolerate Lyrica than he could not help me but the way itwas said was as if it was my fault. Needless to say I left there intears. I was a person who used to work out 6-7 days per week and togo fron that to this is very depressing. a Rheumo who I saw yesterdayonly for the second time, knows I'm in a very bad flare with horrificpain told me to go home and exercise for 45 minutes at least 4 daysper week. I looked at him like he was nuts and asked him how I'msupposed to do this with this pain and such fatigue. He just told meto do it and figure it out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Some folks get some relief from the Cuddle Ewe mattress toppers, especially if they spend a lot of time in bed. They aren't cheap, but there are other similar toppers that aren't as expensive if you look around some. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Pam etc... I don't do aerobics but do got o Curves 2 days a week sometimes 3. when i am in a flare I barely feel like doing anything but I do some stretches at curves not the machines at all that day. I do simple things too.Like you Pam walk a little bit or even go out walk in our yard etc.... I feel long as you keep it simple and you know what your body feels like you can do it will be ok.You know yuor own body and what it is capable of doing in a flare. But I just stretch even at home I do simple stretches too. Like today really bad hip and lower back ache but read I need a travel pillow for my lower back in bed also on my computer chair too. I am really tuning in more tom y body too. Gentle hugs to you all heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Our neighbor gave us hers it didn't help her it is small egg shaped she got it at Dillard's on sale. we have 8 year old pillow top mattress and I still ache. Read an article in FM NET NEWS and it appears I need more pillows near me one under my Hips and spine I have tons of more bone loss in my hips and lower spine than upper spine then one in between my knees but I move around alot so much too i ache then I toss and get comfy again. even sometimes sleeping on my stomach. But I have heard they are good too same thing with cervical pillows. i just spend my big bad ugly monster dragon flare time in the recliner with the heater on not doing much but then I also move around get something to eat too. Not much of staying in bed even when I am sick even when my hair hurts. Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 I cannot live without my moist heating pad. ESPECIALLY after exercise. I use the type that all the massage therapist use. When I am in a Flare it is a huge help. My old chiropractor was against it because heat makes muscle expand but I really cannot tell you the wonderful soothing results I get from my pad. I even take it with me when I travel. I have even take it with me when I ride in a clinic so that when I am finished I can plug it in anywhere and sit on it. My husband turns it on at night so it is warm when I get in bed. Love it!Soothing moist heating pad hugs,SueFrom: Rizzo-Harrell <bookie0415@...>dominie Sent: Wednesday, October 29, 2008 1:31:53 AMSubject: Re: Re: a couple of odd things Thanks Sandie, I wastold a certain type to Yoga is very good but I don't recall the name, big surprise. I hurt so badly in the mornings that I'll try to stretching and see how that does me. What about moist heating pad? Would that do anything? Just tring to get idea on how I can get my body moving without further hurting. I'm still in my bad flare and it's been almost 2 wks but am very tired of not being able to do things. Thank for your ideas. All is very much appreciated. Soft hugs to you From: Dominie Bush <dombushbellsouth (DOT) net>Subject: Re: a couple of odd thingsdominie@groups .comDate: Tuesday, October 28, 2008, 10:43 PM Grrr. Oh, how cruel! That doc doesn't have a clue!!!!! Lyricadoesn't work for everyone and has terrible side effects for many. Go tohttp://www.fms- help.com/ doctors.htm - it's for shell shocked FMS patients to read after being devastatedby a doctor's visit! I remember when my FMS was at its worst (1980's) http://www.fms- help.com/ interview. htmthat a doc told me to sign up for a gym at the hospital. I did so andjoined an aerobics class. The young lady who was leading the classwas named "Inga" - a beautiful Swedish gal who I think had springs inher legs! She was doing all this jumping around and had incrediblestamina! I am totally uncoordinated and had severe FMS. I ended upon the floor with an injured back. Others in the class weren't doingso well either - one very large lady jumped right out of her tank top.HA!!!!! (If we didn't laugh sometimes, we would cry!)Dom>> I've had a very similar situation with a Rheumo and was told thatsince I can't tolerate Lyrica than he could not help me but the way itwas said was as if it was my fault. Needless to say I left there intears. I was a person who used to work out 6-7 days per week and togo fron that to this is very depressing. a Rheumo who I saw yesterdayonly for the second time, knows I'm in a very bad flare with horrificpain told me to go home and exercise for 45 minutes at least 4 daysper week. I looked at him like he was nuts and asked him how I'msupposed to do this with this pain and such fatigue. He just told meto do it and figure it out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Thanks for the info, I've been needing a new heating pad for a long time and will have to invest in the moist heat one. Deb Halvorson From: Urbanczyk <featherednst@...>dominie Sent: Wednesday, October 29, 2008 9:58:17 AMSubject: Re: Re: a couple of odd things I cannot live without my moist heating pad. ESPECIALLY after exercise. I use the type that all the massage therapist use. When I am in a Flare it is a huge help. My old chiropractor was against it because heat makes muscle expand but I really cannot tell you the wonderful soothing results I get from my pad. I even take it with me when I travel. I have even take it with me when I ride in a clinic so that when I am finished I can plug it in anywhere and sit on it. My husband turns it on at night so it is warm when I get in bed. Love it!Soothing moist heating pad hugs,Sue From: Rizzo-Harrell <bookie0415 (DOT) com>dominie@groups .comSent: Wednesday, October 29, 2008 1:31:53 AMSubject: Re: Re: a couple of odd things Thanks Sandie, I wastold a certain type to Yoga is very good but I don't recall the name, big surprise. I hurt so badly in the mornings that I'll try to stretching and see how that does me. What about moist heating pad? Would that do anything? Just tring to get idea on how I can get my body moving without further hurting. I'm still in my bad flare and it's been almost 2 wks but am very tired of not being able to do things. Thank for your ideas. All is very much appreciated. Soft hugs to you From: Dominie Bush <dombushbellsouth (DOT) net>Subject: Re: a couple of odd thingsdominie@groups .comDate: Tuesday, October 28, 2008, 10:43 PM Grrr. Oh, how cruel! That doc doesn't have a clue!!!!! Lyricadoesn't work for everyone and has terrible side effects for many. Go tohttp://www.fms- help.com/ doctors.htm - it's for shell shocked FMS patients to read after being devastatedby a doctor's visit! I remember when my FMS was at its worst (1980's) http://www.fms- help.com/ interview. htmthat a doc told me to sign up for a gym at the hospital. I did so andjoined an aerobics class. The young lady who was leading the classwas named "Inga" - a beautiful Swedish gal who I think had springs inher legs! She was doing all this jumping around and had incrediblestamina! I am totally uncoordinated and had severe FMS. I ended upon the floor with an injured back. Others in the class weren't doingso well either - one very large lady jumped right out of her tank top.HA!!!!! (If we didn't laugh sometimes, we would cry!)Dom>> I've had a very similar situation with a Rheumo and was told thatsince I can't tolerate Lyrica than he could not help me but the way itwas said was as if it was my fault. Needless to say I left there intears. I was a person who used to work out 6-7 days per week and togo fron that to this is very depressing. a Rheumo who I saw yesterdayonly for the second time, knows I'm in a very bad flare with horrificpain told me to go home and exercise for 45 minutes at least 4 daysper week. I looked at him like he was nuts and asked him how I'msupposed to do this with this pain and such fatigue. He just told meto do it and figure it out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Heidi: Good for you on the not staying in bed. It just makes our symptoms worse. I force myself out of bed after 8 hours regardless of how miserable I feel. Not easy, but necessary. Depression can really bring you down and the pain gets worse the longer you lie there in my experience. S. Re: a couple of odd things Our neighbor gave us hers it didn't help her it is small egg shaped she got it at Dillard's on sale. we have 8 year old pillow top mattress and I still ache. Read an article in FM NET NEWS and it appears I need more pillows near me one under my Hips and spine I have tons of more bone loss in my hips and lower spine than upper spine then one in between my knees but I move around alot so much too i ache then I toss and get comfy again. even sometimes sleeping on my stomach. But I have heard they are good too same thing with cervical pillows. i just spend my big bad ugly monster dragon flare time in the recliner with the heater on not doing much but then I also move around get something to eat too. Not much of staying in bed even when I am sick even when my hair hurts. Heidi McCain or Obama? Stay up to date on the latest from the campaign trail with AOL News. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 , Yes, i do exercise regularly but do NOT do any of it when in a flare. I don't care what they tell me, I know my body and I know that forcing it during these times makes me worse in the long run. Now, please understand that my exercise is not strenuous at the best of times, but rather a gentle form that incorporates stretching and balance. Mondays I do this and then a walking tape for 3 miles. Tuesdays I do Tai Chi and Fridays, beginner line dancing (not at all fast). In between when my IBS-D is not active, I walk with hubby. When I do back off due to a flare, I SLOWLY return to my routine just as soon as I am able to get back to it. You can back off for too long I have found and that is not good for you. HTH Thai > Do any of you exercise routinely, even when in a flare and how do you? Doesn't it cause worse pain and then later even worse? I would love to exercise but with everything hurting I wouldn't know where to begin. I can't even use a can opener to open cans anymore, that's how bad I've gotten. Any exercise suggestions are very much appreciated. > > Thanks so much > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 I don't have a heating pad but use my rice socks, my recliner has on in lower back area use that at night while watching TV and knit too.I like to knit but when I am in a flare I cannot knit it hurts too much.I just go and make myself do things. My Aunt use to call me Tigger. Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 My Thermaphore heating pad goes with me to Florida!! I am Canadian, and spend 6 months down south and this is on the top of the list of things to go. Wouldn't think of being without it..................so soothing. Thai > > I cannot live without my moist heating pad. ESPECIALLY after exercise. I use the type that all the massage therapist use. When I am in a Flare it is a huge help. My old chiropractor was against it because heat makes muscle expand but I really cannot tell you the wonderful soothing results I get from my pad. I even take it with me when I travel. I have even take it with me when I ride in a clinic so that when I am finished I can plug it in anywhere and sit on it. My husband turns it on at night so it is warm when I get in bed. Love it! > > Soothing moist heating pad hugs, > > Sue > > > ________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 To S. I'm curious about something, I've had a bad flare now for 10 days or so and it's extremely bad. I'm not sure how long they last or what the average is, but my question is, why do you say good for you for not staying in bed? It just makes someone like me feel really bad that I have no choice but to stay in bed. I'm going thru something very bad right now and what makes me feels better is lying downin a flat straight position. where I can adjust myself accordingly. It drives me crazy to lie in bed but if it's what makes me feel better than so be it, right? I pushed myself to get out of bed earlier today and had to go back in just 2 hrs laters because I got so much worse. I'm sorry but I just had to voice that. It's not fair and it feels like someone like me, who feels better lying flat, is looked down upon, or at least that's the way I am taking it. Please do not judge those of us who don't agree with what you might think. I'm sorry if this is being taken the wrong way. Thank you for your time H From: kmtrs1@... <kmtrs1@...>Subject: Re: Re: a couple of odd thingsdominie Date: Wednesday, October 29, 2008, 2:55 PM Heidi: Good for you on the not staying in bed. It just makes our symptoms worse. I force myself out of bed after 8 hours regardless of how miserable I feel. Not easy, but necessary. Depression can really bring you down and the pain gets worse the longer you lie there in my experience. S. Re: a couple of odd things Our neighbor gave us hers it didn't help her it is small egg shaped she got it at Dillard's on sale. we have 8 year old pillow top mattress and I still ache. Read an article in FM NET NEWS and it appears I need more pillows near me one under my Hips and spine I have tons of more bone loss in my hips and lower spine than upper spine then one in between my knees but I move around alot so much too i ache then I toss and get comfy again. even sometimes sleeping on my stomach. But I have heard they are good too same thing with cervical pillows. i just spend my big bad ugly monster dragon flare time in the recliner with the heater on not doing much but then I also move around get something to eat too. Not much of staying in bed even when I am sick even when my hair hurts. Heidi McCain or Obama? Stay up to date on the latest from the campaign trail with AOL News. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Hi , I'm positive that no one is judging you for staying in bed. And most of us have times when the bed--or for me, it's my recliner chair--is the only place to be. It's just that, sometimes you feel like you've overcome something, maybe won a little, if you get out of bed and do something. Emotionally that sometimes makes me feel better. But I don't feel guilty when I can't get up and do something either. If my husband is not in the mood to be gracious and wait on me, then I just lay there because I cannot do for myself, and I don't feel guilty. Please don't think that we would ever look down upon anybody. I've never seen that happen here, and I've been here from the beginning. This is a group of the most compassionate and understanding women & men that you'll find anywhere. We all know what a bad flare is. I hope you come out of it soon, but until then, make yourself as comfortable as possible. That's what we all want for you. Pam Re: a couple of odd things Our neighbor gave us hers it didn't help her it is small egg shaped she got it at Dillard's on sale. we have 8 year old pillow top mattress and I still ache. Read an article in FM NET NEWS and it appears I need more pillows near me one under my Hips and spine I have tons of more bone loss in my hips and lower spine than upper spine then one in between my knees but I move around alot so much too i ache then I toss and get comfy again. even sometimes sleeping on my stomach. But I have heard they are good too same thing with cervical pillows. i just spend my big bad ugly monster dragon flare time in the recliner with the heater on not doing much but then I also move around get something to eat too. Not much of staying in bed even when I am sick even when my hair hurts. Heidi McCain or Obama? Stay up to date on the latest from the campaign trail with AOL News. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Thank you for clearing things up. I think I'm just in the anger stages wondering what I ever did wrong to deserve this and I know that's not how it works but sometimes that's the way I feel. I'm also in the guilty stage because I can't do for my family not even cook and I feel like they're looking at me like I'm just being lazy. I guess I've gotten so used to the docs being so rude and belittling our illness that it just all envelopes me. I have so many errands to do that Its overwelming being that I can hardly move. I am very grateful for this group, I just have so much going on with so few answers that I'm also very frustrated. Thanks again to u and everyone for being there for me. Soft hugs to you. H.Sent from my BlackBerry® smartphone with SprintSpeedFrom: "Pam Horne" <pmarshall@...>Date: Wed, 29 Oct 2008 23:49:45 -0400<dominie >Subject: Re: Re: a couple of odd things Hi , I'm positive that no one is judging you for staying in bed. And most of us have times when the bed--or for me, it's my recliner chair--is the only place to be. It's just that, sometimes you feel like you've overcome something, maybe won a little, if you get out of bed and do something. Emotionally that sometimes makes me feel better. But I don't feel guilty when I can't get up and do something either. If my husband is not in the mood to be gracious and wait on me, then I just lay there because I cannot do for myself, and I don't feel guilty. Please don't think that we would ever look down upon anybody. I've never seen that happen here, and I've been here from the beginning. This is a group of the most compassionate and understanding women & men that you'll find anywhere. We all know what a bad flare is. I hope you come out of it soon, but until then, make yourself as comfortable as possible. That's what we all want for you. Pam Re: a couple of odd things Our neighbor gave us hers it didn't help her it is small egg shaped she got it at Dillard's on sale. we have 8 year old pillow top mattress and I still ache. Read an article in FM NET NEWS and it appears I need more pillows near me one under my Hips and spine I have tons of more bone loss in my hips and lower spine than upper spine then one in between my knees but I move around alot so much too i ache then I toss and get comfy again. even sometimes sleeping on my stomach. But I have heard they are good too same thing with cervical pillows. i just spend my big bad ugly monster dragon flare time in the recliner with the heater on not doing much but then I also move around get something to eat too. Not much of staying in bed even when I am sick even when my hair hurts. Heidi McCain or Obama? Stay up to date on the latest from the campaign trail with AOL News. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 I was wondering about a heating blanket but was wondering if it helps as I heard we should always use moist heat or is this something different? Thanks HSent from my BlackBerry® smartphone with SprintSpeedFrom: "memommy1947" <MEMOMMY1947@...>Date: Thu, 30 Oct 2008 00:11:26 -0500 (Eastern Standard Time)<dominie >Subject: Re: Re: a couple of odd things Sue, I had a Chiropractor several years ago that had a special bed that looked like a bath tub. It was heated, and air blew these small bead like things in it. He had his patients lie in it for 15-30 minutes before adjustment. It felt so good. After I had been going to him for awhile they would schedule me just before his lunch or last patient in the day, that way I would go in early and they showed me how to use the timer on it. I would sometimes get to do 45 minutes. It relaxed me enough that he was able to get the soft tissue adjusted to put me back in alignment. I miss him, but it would be a 6 hour one way trip to go to him. I had a massage therapist, who took extra training in working with fibro patients as her mother and daughter had fibro. She told me to use a heating blanket year round, as our body temperature drops at least 2 degrees at night, and by using the heat blanket we could maintain and even body heat and cut down on the stiffness. It worked for me. I can't do it now as hubby is home, he used to be an over the road truck driver so most of the time I was alone. Sandie -- Re: a couple of odd thingsdominie@groups .comDate: Tuesday, October 28, 2008, 10:43 PM Grrr. Oh, how cruel! That doc doesn't have a clue!!!!! Lyricadoesn't work for everyone and has terrible side effects for many. Go tohttp://www.fms- help.com/ doctors.htm - it's for shell shocked FMS patients to read after being devastatedby a doctor's visit! I remember when my FMS was at its worst (1980's) http://www.fms- help.com/ interview. htmthat a doc told me to sign up for a gym at the hospital. I did so andjoined an aerobics class. The young lady who was leading the classwas named "Inga" - a beautiful Swedish gal who I think had springs inher legs! She was doing all this jumping around and had incrediblestamina! I am totally uncoordinated and had severe FMS. I ended upon the floor with an injured back. Others in the class weren't doingso well either - one very large lady jumped right out of her tank top.HA!!!!! (If we didn't laugh sometimes, we would cry!)Dom>> I've had a very similar situation with a Rheumo and was told thatsince I can't tolerate Lyrica than he could not help me but the way itwas said was as if it was my fault. Needless to say I left there intears. I was a person who used to work out 6-7 days per week and togo fron that to this is very depressing. a Rheumo who I saw yesterdayonly for the second time, knows I'm in a very bad flare with horrificpain told me to go home and exercise for 45 minutes at least 4 daysper week. I looked at him like he was nuts and asked him how I'msupposed to do this with this pain and such fatigue. He just told meto do it and figure it out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Thank u so much for those wonderful encouraging words. They very much help. How does one get rid or at least lessen the pain. I was in tears today it was so bad. Thanks u again. HSent from my BlackBerry® smartphone with SprintSpeedFrom: "memommy1947" <MEMOMMY1947@...>Date: Thu, 30 Oct 2008 00:54:13 -0500 (Eastern Standard Time)<dominie >Subject: Re: Re: a couple of odd things H, If I were to stay in bed when I was having a bad flare, it would never let up as the pain and stiffness would get worse. Good for you, you got up for 2 hours, keep it up and you may find that by increasing a minute a day, that eventually you can make it most of the day sitting in a chair. Take baby steps, but don't say can't or never. Remember the childhood story, " The little train that could" Sandie -- Re: a couple of odd things Our neighbor gave us hers it didn't help her it is small egg shaped she got it at Dillard's on sale. we have 8 year old pillow top mattress and I still ache. Read an article in FM NET NEWS and it appears I need more pillows near me one under my Hips and spine I have tons of more bone loss in my hips and lower spine than upper spine then one in between my knees but I move around alot so much too i ache then I toss and get comfy again. even sometimes sleeping on my stomach. But I have heard they are good too same thing with cervical pillows. i just spend my big bad ugly monster dragon flare time in the recliner with the heater on not doing much but then I also move around get something to eat too. Not much of staying in bed even when I am sick even when my hair hurts. Heidi McCain or Obama? Stay up to date on the latest from the campaign trail with AOL News. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Sue, I had a Chiropractor several years ago that had a special bed that looked like a bath tub. It was heated, and air blew these small bead like things in it. He had his patients lie in it for 15-30 minutes before adjustment. It felt so good. After I had been going to him for awhile they would schedule me just before his lunch or last patient in the day, that way I would go in early and they showed me how to use the timer on it. I would sometimes get to do 45 minutes. It relaxed me enough that he was able to get the soft tissue adjusted to put me back in alignment. I miss him, but it would be a 6 hour one way trip to go to him. I had a massage therapist, who took extra training in working with fibro patients as her mother and daughter had fibro. She told me to use a heating blanket year round, as our body temperature drops at least 2 degrees at night, and by using the heat blanket we could maintain and even body heat and cut down on the stiffness. It worked for me. I can't do it now as hubby is home, he used to be an over the road truck driver so most of the time I was alone. Sandie -- Re: a couple of odd thingsdominie@groups .comDate: Tuesday, October 28, 2008, 10:43 PM Grrr. Oh, how cruel! That doc doesn't have a clue!!!!! Lyricadoesn't work for everyone and has terrible side effects for many. Go tohttp://www.fms- help.com/ doctors.htm - it's for shell shocked FMS patients to read after being devastatedby a doctor's visit! I remember when my FMS was at its worst (1980's) http://www.fms- help.com/ interview. htmthat a doc told me to sign up for a gym at the hospital. I did so andjoined an aerobics class. The young lady who was leading the classwas named "Inga" - a beautiful Swedish gal who I think had springs inher legs! She was doing all this jumping around and had incrediblestamina! I am totally uncoordinated and had severe FMS. I ended upon the floor with an injured back. Others in the class weren't doingso well either - one very large lady jumped right out of her tank top.HA!!!!! (If we didn't laugh sometimes, we would cry!)Dom>> I've had a very similar situation with a Rheumo and was told thatsince I can't tolerate Lyrica than he could not help me but the way itwas said was as if it was my fault. Needless to say I left there intears. I was a person who used to work out 6-7 days per week and togo fron that to this is very depressing. a Rheumo who I saw yesterdayonly for the second time, knows I'm in a very bad flare with horrificpain told me to go home and exercise for 45 minutes at least 4 daysper week. I looked at him like he was nuts and asked him how I'msupposed to do this with this pain and such fatigue. He just told meto do it and figure it out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 H, If I were to stay in bed when I was having a bad flare, it would never let up as the pain and stiffness would get worse. Good for you, you got up for 2 hours, keep it up and you may find that by increasing a minute a day, that eventually you can make it most of the day sitting in a chair. Take baby steps, but don't say can't or never. Remember the childhood story, " The little train that could" Sandie -- Re: a couple of odd things Our neighbor gave us hers it didn't help her it is small egg shaped she got it at Dillard's on sale. we have 8 year old pillow top mattress and I still ache. Read an article in FM NET NEWS and it appears I need more pillows near me one under my Hips and spine I have tons of more bone loss in my hips and lower spine than upper spine then one in between my knees but I move around alot so much too i ache then I toss and get comfy again. even sometimes sleeping on my stomach. But I have heard they are good too same thing with cervical pillows. i just spend my big bad ugly monster dragon flare time in the recliner with the heater on not doing much but then I also move around get something to eat too. Not much of staying in bed even when I am sick even when my hair hurts. Heidi McCain or Obama? Stay up to date on the latest from the campaign trail with AOL News. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 When I am flaring, I find that a warm bathtub with Epsom salts helps or a warm shower, helps to relieve some of the stiffness and pain, then I can do gentle stretching. Some times I can do 10 reps of a stretch, other times I do good to do it once, but I keep plugging along. I have never been a fan of bed, from the time of being a very small child to now at the ripe old age of 61. Had the mother of a friend who was from Belgium, tell me that she gets up every day, even when ill, because you die in bed. So I remember that, and keep moving. I do find things to occupy my mind, thus helping to get it off of my pain even for a few minutes, I do pencil puzzles or if I can get to the computer chair, I play in a graphic program called paint shop pro, and can really get lost in it. Helps to take the mind off of my pain. Our minds are a very powerful tool. Sandie -- Re: a couple of odd things Our neighbor gave us hers it didn't help her it is small egg shaped she got it at Dillard's on sale. we have 8 year old pillow top mattress and I still ache. Read an article in FM NET NEWS and it appears I need more pillows near me one under my Hips and spine I have tons of more bone loss in my hips and lower spine than upper spine then one in between my knees but I move around alot so much too i ache then I toss and get comfy again. even sometimes sleeping on my stomach. But I have heard they are good too same thing with cervical pillows. i just spend my big bad ugly monster dragon flare time in the recliner with the heater on not doing much but then I also move around get something to eat too. Not much of staying in bed even when I am sick even when my hair hurts. Heidi McCain or Obama? Stay up to date on the latest from the campaign trail with AOL News. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 Moist heat to relieve pain, and inflammation. The heating blanket is used to hold our body temp at a steady rate. Just put it on a low setting. Sandie -- Re: a couple of odd thingsdominie@groups .comDate: Tuesday, October 28, 2008, 10:43 PM Grrr. Oh, how cruel! That doc doesn't have a clue!!!!! Lyricadoesn't work for everyone and has terrible side effects for many. Go tohttp://www.fms- help.com/ doctors.htm - it's for shell shocked FMS patients to read after being devastatedby a doctor's visit! I remember when my FMS was at its worst (1980's) http://www.fms- help.com/ interview. htmthat a doc told me to sign up for a gym at the hospital. I did so andjoined an aerobics class. The young lady who was leading the classwas named "Inga" - a beautiful Swedish gal who I think had springs inher legs! She was doing all this jumping around and had incrediblestamina! I am totally uncoordinated and had severe FMS. I ended upon the floor with an injured back. Others in the class weren't doingso well either - one very large lady jumped right out of her tank top.HA!!!!! (If we didn't laugh sometimes, we would cry!)Dom>> I've had a very similar situation with a Rheumo and was told thatsince I can't tolerate Lyrica than he could not help me but the way itwas said was as if it was my fault. Needless to say I left there intears. I was a person who used to work out 6-7 days per week and togo fron that to this is very depressing. a Rheumo who I saw yesterdayonly for the second time, knows I'm in a very bad flare with horrificpain told me to go home and exercise for 45 minutes at least 4 daysper week. I looked at him like he was nuts and asked him how I'msupposed to do this with this pain and such fatigue. He just told meto do it and figure it out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 , when we get new diagnosis, we go through the same stages as we do when some one close to us die. Once you get through all 5 stages, you will find that things seem to be a little better and more tolerable. Sandie -- Re: Re: a couple of odd things Hi , I'm positive that no one is judging you for staying in bed. And most of us have times when the bed--or for me, it's my recliner chair--is the only place to be. It's just that, sometimes you feel like you've overcome something, maybe won a little, if you get out of bed and do something. Emotionally that sometimes makes me feel better. But I don't feel guilty when I can't get up and do something either. If my husband is not in the mood to be gracious and wait on me, then I just lay there because I cannot do for myself, and I don't feel guilty. Please don't think that we would ever look down upon anybody. I've never seen that happen here, and I've been here from the beginning. This is a group of the most compassionate and understanding women & men that you'll find anywhere. We all know what a bad flare is. I hope you come out of it soon, but until then, make yourself as comfortable as possible. That's what we all want for you. Pam Re: a couple of odd things Our neighbor gave us hers it didn't help her it is small egg shaped she got it at Dillard's on sale. we have 8 year old pillow top mattress and I still ache. Read an article in FM NET NEWS and it appears I need more pillows near me one under my Hips and spine I have tons of more bone loss in my hips and lower spine than upper spine then one in between my knees but I move around alot so much too i ache then I toss and get comfy again. even sometimes sleeping on my stomach. But I have heard they are good too same thing with cervical pillows. i just spend my big bad ugly monster dragon flare time in the recliner with the heater on not doing much but then I also move around get something to eat too. Not much of staying in bed even when I am sick even when my hair hurts. Heidi McCain or Obama? Stay up to date on the latest from the campaign trail with AOL News. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 Hi , I understand your frustration at not being able to do the things you used to. It's very hard for me also. I think alot of us are the " go getter" types and it's hard to accept that we can't do everything for everybody that we once did. The stories about uncaring and uninformed doctors make me angry. I try to do what I can and make peace with what I can't. You are not alone in your feelings- hang in there:)Beth Moorman From: kmtrs1@... <kmtrs1@...>Subject: Re: Re: a couple of odd thingsdominie@groups .comDate: Wednesday, October 29, 2008, 2:55 PM Heidi: Good for you on the not staying in bed. It just makes our symptoms worse. I force myself out of bed after 8 hours regardless of how miserable I feel. Not easy, but necessary. Depression can really bring you down and the pain gets worse the longer you lie there in my experience. S. Re: a couple of odd things Our neighbor gave us hers it didn't help her it is small egg shaped she got it at Dillard's on sale. we have 8 year old pillow top mattress and I still ache. Read an article in FM NET NEWS and it appears I need more pillows near me one under my Hips and spine I have tons of more bone loss in my hips and lower spine than upper spine then one in between my knees but I move around alot so much too i ache then I toss and get comfy again. even sometimes sleeping on my stomach. But I have heard they are good too same thing with cervical pillows. i just spend my big bad ugly monster dragon flare time in the recliner with the heater on not doing much but then I also move around get something to eat too. Not much of staying in bed even when I am sick even when my hair hurts. Heidi McCain or Obama? Stay up to date on the latest from the campaign trail with AOL News. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 : Not lookng down on anyone. I say "good for you" to encourage folks who are doing their best to stay out of bed and keeping on. My experience with staying in bed is negative. For every day one stays in bed it's three days to recuperate. It also feeds the depression that all too often goes along with this disorder. I will try not to bore you with my symptoms and the course of illness. It has been very negative and frightening, but I try my darndnest to stay out of my emotional basement. In my personal case, it is not unlikely that I will someday be wheelchair bound as I have significant small fiber neuropathy and am in pain every single day. Every day that I spend up and around is a gift to me and I choose not to squander it by staying in bed. Our situations are different. I assume you are doing the best you can at this time. The entry wasn't directed at you and I am sorry that you felt that it was. It was a general statement and it was directed specifically at Heidi who stated that she doesn't stay in bed even when her hair hurts. It was in response to her statement and meant to be in supportive of her efforts. Sorry you took it so personally. S. Re: a couple of odd things Our neighbor gave us hers it didn't help her it is small egg shaped she got it at Dillard's on sale. we have 8 year old pillow top mattress and I still ache. Read an article in FM NET NEWS and it appears I need more pillows near me one under my Hips and spine I have tons of more bone loss in my hips and lower spine than upper spine then one in between my knees but I move around alot so much too i ache then I toss and get comfy again. even sometimes sleeping on my stomach. But I have heard they are good too same thing with cervical pillows. i just spend my big bad ugly monster dragon flare time in the recliner with the heater on not doing much but then I also move around get something to eat too. Not much of staying in bed even when I am sick even when my hair hurts. Heidi McCain or Obama? Stay up to date on the latest from the campaign trail with AOL News. McCain or Obama? Stay up to date on the latest from the campaign trail with AOL News. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 Thank you and as I stated prior to this, I am in a very emotional state, including confusion, frustration, depression, no confidence in these doctors, chronic daily pain, etc., so I apologize if I did take it the wrong way. We are all suffering in different but similar ways and like you my neuropathy may or may not keep me in a wheelchair for the rest of my life. Supposedly mine will only get worse, so believe me I would love nothing more than to jump out of that bed and do something. So thank you for clearing this up. Hugs H From: kmtrs1@... <kmtrs1@...>Subject: Re: Re: a couple of odd thingsdominie@groups .comDate: Wednesday, October 29, 2008, 2:55 PM Heidi: Good for you on the not staying in bed. It just makes our symptoms worse. I force myself out of bed after 8 hours regardless of how miserable I feel. Not easy, but necessary. Depression can really bring you down and the pain gets worse the longer you lie there in my experience. S. Re: a couple of odd things Our neighbor gave us hers it didn't help her it is small egg shaped she got it at Dillard's on sale. we have 8 year old pillow top mattress and I still ache. Read an article in FM NET NEWS and it appears I need more pillows near me one under my Hips and spine I have tons of more bone loss in my hips and lower spine than upper spine then one in between my knees but I move around alot so much too i ache then I toss and get comfy again. even sometimes sleeping on my stomach. But I have heard they are good too same thing with cervical pillows. i just spend my big bad ugly monster dragon flare time in the recliner with the heater on not doing much but then I also move around get something to eat too. Not much of staying in bed even when I am sick even when my hair hurts. Heidi McCain or Obama? Stay up to date on the latest from the campaign trail with AOL News. McCain or Obama? Stay up to date on the latest from the campaign trail with AOL News. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 Thanks so much Beth, I'm hanging in and really taking the great advice that's being offered to me with much appreciation.. Thanks so much for caring. Soft Hugs H From: kmtrs1@... <kmtrs1@...>Subject: Re: Re: a couple of odd thingsdominie@groups .comDate: Wednesday, October 29, 2008, 2:55 PM Heidi: Good for you on the not staying in bed. It just makes our symptoms worse. I force myself out of bed after 8 hours regardless of how miserable I feel. Not easy, but necessary. Depression can really bring you down and the pain gets worse the longer you lie there in my experience. S. Re: a couple of odd things Our neighbor gave us hers it didn't help her it is small egg shaped she got it at Dillard's on sale. we have 8 year old pillow top mattress and I still ache. Read an article in FM NET NEWS and it appears I need more pillows near me one under my Hips and spine I have tons of more bone loss in my hips and lower spine than upper spine then one in between my knees but I move around alot so much too i ache then I toss and get comfy again. even sometimes sleeping on my stomach. But I have heard they are good too same thing with cervical pillows. i just spend my big bad ugly monster dragon flare time in the recliner with the heater on not doing much but then I also move around get something to eat too. Not much of staying in bed even when I am sick even when my hair hurts. Heidi McCain or Obama? Stay up to date on the latest from the campaign trail with AOL News. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 Thanks Heidi I do believe I will start journaling instead of bringing in notes to the doctor's everytime I go. Writing down the foods I consume also a great idea, thankfully I'm a vegetarian so don't have to worry about what's in the meats. I too have Fibro, Multiple Chemical Sensitivities, Chronic Fatigue and I do believe Myofascial Pain Syndrome. This last one I can't seem to get the correct answer from my doctor as he says it's the same as Fibro, but it's not. Thanks for the great ideas. Soft Hugs H From: heidi <heidilhlokey@...>Subject: Re: a couple of odd thingsdominie Date: Thursday, October 30, 2008, 11:08 AM Get two journals in one write down how you feel each day your `true feelings sad upset at what you cannot do anymore say goodbye to the old you and redo a whole new you.Sandie is right and all of us have been through it.It is called the small death by hospice to say goodbye to what we cannot do anymore nd hello to what we ans till do. Also pick your battles too if you're offered two things do what makes you feel happy like example go grocery shopping or do something with your kids . Just have learn to pick your priorities. also get rid of negative stuff in your life and simplify too.I am now simplifying allot more too after being told I had Fibromyalgia, Myofascial pain an d Multiple chemical sensitivities a few years ago.Yes I get mad when i cannot do anything too. I am just coming out of a flare last night I had dinner in the oven cooking told my hubby I need to go get dinner out of the recliner I meant oven. he said ,Heidi you said get dinner out of the recline, funny I don't see it cooking in the recliner." so we laughed.Also get a journal write down what you eat,drink too you might be sensitive to certain foods I know I am and they make feel icky the next day my cardiologist told me that is the posion and antibiotics in the food and preservatives too. I am on low cholesterol and low sodium eating pan hubby is too. but Dr N also told me watch our consumption of red meat and chicken for it is full of antibiotics,He quoted me this 19 million lbs of antibiotics are given to animals each year and over 30 just to one cow at sub therapeutic amounts. so every time we eat red meat or chicken we ingest these antibiotics and they kill off our good bacteria in our bodies.I use on Chicken only it is lower in antibiotics and not fll of preservatives either. try watching your soda too get rid of that if you drink it and MSG. Aspartame too. Me I watch my tomatoes I love them can have a plate full but I ache like o ones business the next day if I eat to much same with watermelon too.So each one of us is different. But Journaling does help one for your thoughts one for what you eat and how you feel afterward. think Positive do something each day that makes you feel good about yourself no matter how small OK.Gentle hugs coming yuor wayheidiHeidi Quote Link to comment Share on other sites More sharing options...
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