Guest guest Posted March 12, 1999 Report Share Posted March 12, 1999 In a message dated 3/12/99 8:50:08 AM Pacific Standard Time, deejay@... writes: << Anyone else have balance problems with these diseases? Judy (deejay) son, WA Scleroderma 10+ yrs. AP 2 yrs. >> Yep My balance is not so good I fall down all the time usually don't mention it too much. I have been sicker this last month since I got the flu and recovery has been slow for me. I fell in the bathtub last week so yes, I would say balance is a problem and always has been. I used to think it was from the hysterectomy but I think it is from the spondalaratherapies. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 1999 Report Share Posted March 12, 1999 Yep - I've noticed that balance has faded...I find it hard to stand on one foot for more than 2 seconds... -Mike- (Psoriatic Arthritis) rheumatic balance problems >From: " Deejay " <deejay@...> > >Hi: The words " balance problems " jumped out at me from Bev's post. My mom >(In her 70's) has been diagnosed with " mixed connective tissue disease. " >more specifically - lupus, scleroderma and myositis. She was having big >time balance problems and I thought it was something else. Anyone else >have balance problems with these diseases? Judy (deejay) son, WA >Scleroderma 10+ yrs. AP 2 yrs. > > >------------------------------------------------------------------------ >We are proud as punch of our new web site! > >Onelist: The leading provider of free email community services > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 1999 Report Share Posted March 12, 1999 Yes before I turned the corner on AP I had a real hard time making turns fast. I also wouls fall sideways a lot and not be able to catch myself. That went away then back in December??? It started again for a week. Now I can turn on a dime!! Cooky Deejay wrote: > > From: " Deejay " <deejay@...> > > Hi: The words " balance problems " jumped out at me from Bev's post. My mom > (In her 70's) has been diagnosed with " mixed connective tissue disease. " > more specifically - lupus, scleroderma and myositis. She was having big > time balance problems and I thought it was something else. Anyone else > have balance problems with these diseases? Judy (deejay) son, WA > Scleroderma 10+ yrs. AP 2 yrs. > > ------------------------------------------------------------------------ > We are proud as punch of our new web site! > > Onelist: The leading provider of free email community services Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 1999 Report Share Posted March 13, 1999 Cooky that is so good to hear! Thanks. :>) Bev rheumatic Re: balance problems >From: COOKY STONKEY <cooky1@...> > >Yes before I turned the corner on AP I had a real hard time making turns >fast. I also wouls fall sideways a lot and not be able to catch myself. >That went away then back in December??? It started again for a week. Now >I can turn on a dime!! > >Cooky > >Deejay wrote: >> >> From: " Deejay " <deejay@...> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 1999 Report Share Posted March 13, 1999 Dear : Cooky has said her balance has improved considerably and I think mine has in a small way also. Hope is around the corner. And anyway, It gives me a laugh when I end up on the floor and stumble " up " the stairs. :>) Bev rheumatic Re: balance problems >From: KPSB2@... > >In a message dated 3/12/99 8:50:08 AM Pacific Standard Time, >deejay@... writes: > ><< Anyone else > have balance problems with these diseases? Judy (deejay) son, WA > Scleroderma 10+ yrs. AP 2 yrs. >> >Yep My balance is not so good I fall down all the time usually don't mention >it too much. I have been sicker this last month since I got the flu and >recovery has been slow for me. I fell in the bathtub last week so yes, I would >say balance is a problem and always has been. I used to think it was from the >hysterectomy but I think it is from the spondalaratherapies. > >------------------------------------------------------------------------ >Have you visited our new web site? > >Onelist: Helping to create Internet communities > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 1999 Report Share Posted March 14, 1999 Dear Judy, Yes, I have MCTD and have balance problems. To this day I don't know whether they're from the disease or an effect of the Minocin. My guess is that the disease is the major culprit, aided and abetted by a side effect of Minocin. However, even if I start to go around looking drunk, I'm not about to stop the Minocin. It has helped a lot in other areas of the disease, and I won't give it up! Mazumdar MCTD 30 years (?); AP 9 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 1999 Report Share Posted March 16, 1999 Just putting my 2 cents in again, don't have a problem with balance myself, but " balance problems " shreiks of inner ear trouble to me, especially if accompanied by any dizziness, vertigo, nausea vomiting or ataxia (loss of voluntary muscle control). If I were you guys I'd bring this up with my doc, remember what I found out about minocycline possibly being or becoming toxic to the ear? Don't mean to scare anyone, may be waaaayyy off on this, but it wouldn't hurt to ask your doctor! Sincerely, LizG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 1999 Report Share Posted March 16, 1999 I had it before the Minocin tho. Bev rheumatic Re: balance problems Just putting my 2 cents in again, don't have a problem with balance myself, but " balance problems " shreiks of inner ear trouble to me, especially if accompanied by any dizziness, vertigo, nausea vomiting or ataxia (loss of voluntary muscle control). If I were you guys I'd bring this up with my doc, remember what I found out about minocycline possibly being or becoming toxic to the ear? Don't mean to scare anyone, may be waaaayyy off on this, but it wouldn't hurt to ask your doctor! Sincerely, LizG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2000 Report Share Posted January 5, 2000 I would love to know what the problem is with the balance issue too. If we listed all our symptoms, such as sinus problems and the balance thing, we would have quite a list. My RD thought I was a hypochondriac. Bev > I have the problem with balance especially in the dark. In fact with no > little bit of light to orient by visually I can not walk at all with out > falling to one side or the other. I have had my ears checked thouroughly > and its not them. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2000 Report Share Posted January 5, 2000 Hi All, Just to add to this, balance is a COMMON symptom in CFS. Considering how many CFS patients test positive for the mycoplasmas, I am not surprised to see that you arthritis folks have balance problems. I am not so sure it is coming from ear and sinus problems either. It MAY be an effect on the brain from the mycoplasma infection. a Carnes > I would love to know what the problem is with the balance issue too. If we > listed all our symptoms, such as sinus problems and the balance thing, we > would have quite a list. My RD thought I was a hypochondriac. > > Bev > > > > I have the problem with balance especially in the dark. In fact with no > > little bit of light to orient by visually I can not walk at all with out > > falling to one side or the other. I have had my ears checked thouroughly > > and its not them. > > > > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2000 Report Share Posted January 6, 2000 a, I was watching Dateline the other night and they did a spot on fibromyalgia. When they were showing one patient trying to walk, it was instantly apparent that she not only was having difficulty from pain but also was having a hard time balancing because she kept bumping into the wall she was walking beside. I think the balance problem is pretty common to all of us and I also believe it's exacerbated because so many of us with foot and ankle problems are lacking the stability in that area to conteract when we start to feel off balance. I know I had to be careful when buying runners to get ones with good side-to-side stability to try to compensate for the problem. I've also noticed it's a great deal harder trying to get around on icy sidewalks because of this. Between the balance and poor ankle stability, it's very hard to get around on other than smooth, dry pavement. Hugs, a Peden a Carnes wrote: > > Hi All, > Just to add to this, balance is a COMMON symptom in CFS. Considering how > many CFS patients test positive for the mycoplasmas, I am not surprised to > see that you arthritis folks have balance problems. I am not so sure it is > coming from ear and sinus problems either. It MAY be an effect on the brain > from the mycoplasma infection. > a Carnes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 I have the same problem too. I've tripped over uneven surfaces quite often. I have had ear pain but no ear problems. I also had several severe sinus infections for about 3 years in a row. The last year I also had pneumonia. It was the first time I ever had pneumonia. -- Kiana Rossi bornfree@... Briarwood wrote: > > I would love to know what the problem is with the balance issue too. If we > listed all our symptoms, such as sinus problems and the balance thing, we > would have quite a list. My RD thought I was a hypochondriac. > > Bev > > > I have the problem with balance especially in the dark. In fact with no > > little bit of light to orient by visually I can not walk at all with out > > falling to one side or the other. I have had my ears checked thouroughly > > and its not them. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 , I've only encountered the balance problems in the past few years. I used to be able to walk across a barn beam but wouldn't try it now. I was walking to the car and noticed my gait. If I am ever stopped by a cop and had to walk the highway line, I would be suspected of drinking and I don't drink. I find this infuriating. I seem to be careful walking and seem to step around like an old lady of 80 or more. Some days are worse than others. My sinuses seem better too. Something I never had problems before AP too. Is it the disease or the meds? I don't know. Bev > All my life as far as I can remember, I have tended to walk towards > walls or a person walking next to me. Didnt have the really bad balance > in dark till maybe 17 years ago. I have always had sinus problems and > for years the ear that hurt from wind or whatever but no infection. It > must be the AP but I rarely have the ear aches anymore. Have been going > out without them covered much more now. (I got them in warm weather > too) So far for the last 4 or so months my sinus have been clear and > asthma much better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 I managed to touch my nose with my eyes shut, so I guess I would pass that one. Is that one of the tests they make you do if you are stopped? I find some days are worse than others. Can't figure out why tho. Shoot, if we counted all our symptoms, we'd sure have a bag full. :>) Glad to know I'm not alone. Bev > Ive thought about being stopped and made to walk a line too, cause I > cant do that at all. I had some tests done by a neurologist when trying > to get disability. I cant touch my nose with eyes shut. Cant walk with > eyes shut and toe to toe, I actually fall over, and yet he never put > that on the report and said I was ok. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2000 Report Share Posted January 9, 2000 Bev It must be the disease and not the drugs, or certainly not the AP, because I'm not on it (still thinking it all over!). I become very unsteady on my feet, almost like I'm drunk when I definately haven't touched a drop (honest). It's especially worse first thing on a morning and last thing at night when I'm stiff, or if I've been sitting a while. BTW everybody I too am a nurse, and incidently, it has been noted that several nurses etc. within our particular hospital have all recently been newly diagnosed with RA!! Carol Re: rheumatic Re: Balance Problems >From: " Briarwood " <briarwood@...> > >, >I've only encountered the balance problems in the past few years. I used >to be able to walk across a barn beam but wouldn't try it now. I was >walking to the car and noticed my gait. If I am ever stopped by a cop and >had to walk the highway line, I would be suspected of drinking and I don't >drink. I find this infuriating. I seem to be careful walking and seem to >step around like an old lady of 80 or more. Some days are worse than >others. My sinuses seem better too. Something I never had problems >before AP too. Is it the disease or the meds? I don't know. > >Bev > > >> All my life as far as I can remember, I have tended to walk towards >> walls or a person walking next to me. Didnt have the really bad balance >> in dark till maybe 17 years ago. I have always had sinus problems and >> for years the ear that hurt from wind or whatever but no infection. It >> must be the AP but I rarely have the ear aches anymore. Have been going >> out without them covered much more now. (I got them in warm weather >> too) So far for the last 4 or so months my sinus have been clear and >> asthma much better. > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2000 Report Share Posted January 9, 2000 Carol, I notice too that it is worse when I first get up from sitting. Getting out of the car is fun too. I was watching people get out of their car at the mall, because I couldn't remember how I used to do it so easily. Just swing around and stand up and go. I find I trade some symptoms for others. Right now my stiff neck is gone and my feet and hands aren't numb in the morning, but I have the balance problems and my wrists hurt sometimes and the flu feeling comes and goes. I find it hard to do anything due to low level depression and no get up and go. I am sorry so many of yur fellow nurses and getting sick, but on the up side, if there is one, would be maybe someone will notice this trend and get us more research. Bev > Bev > It must be the disease and not the drugs, or certainly not the AP, because > I'm not on it (still thinking it all over!). I become very unsteady on my > feet, almost like I'm drunk when I definately haven't touched a drop > (honest). It's especially worse first thing on a morning and last thing at > night when I'm stiff, or if I've been sitting a while. > BTW everybody I too am a nurse, and incidently, it has been noted that > several nurses etc. within our particular hospital have all recently been > newly diagnosed with RA!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2000 Report Share Posted January 9, 2000 You ask if the balance problem is the disease or the meds. The balance problem is common in CFS and FMS. My balance problem and sinus problem started when the CFS developed. Both problems have improved and sometimes totally cleared up since I started the antibiotics. I know I have mycoplasma, and I think it is the cause of my symptoms. a Carnes > From: " Briarwood " <briarwood@...> > > , > I've only encountered the balance problems in the past few years. I used > to be able to walk across a barn beam but wouldn't try it now. I was > walking to the car and noticed my gait. If I am ever stopped by a cop and > had to walk the highway line, I would be suspected of drinking and I don't > drink. I find this infuriating. I seem to be careful walking and seem to > step around like an old lady of 80 or more. Some days are worse than > others. My sinuses seem better too. Something I never had problems > before AP too. Is it the disease or the meds? I don't know. > > Bev > > > > All my life as far as I can remember, I have tended to walk towards > > walls or a person walking next to me. Didnt have the really bad balance > > in dark till maybe 17 years ago. I have always had sinus problems and > > for years the ear that hurt from wind or whatever but no infection. It > > must be the AP but I rarely have the ear aches anymore. Have been going > > out without them covered much more now. (I got them in warm weather > > too) So far for the last 4 or so months my sinus have been clear and > > asthma much better. > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2000 Report Share Posted December 8, 2000 Rhonda, you might also ask your Dr. to give you a recommendation for an orthotist. That is a maker of in-shoe orthotics, and also Ankle Foot Orthotics. My in-shoe orthotics help alot with balance. Also, for some wierd reason so does the medication Elavil. Kat's suggestions were great too. Do you have a good Dr. or have you been evaluated at an MDA clinic? http://www.mdadusa.orgg ~ Gretchen Quote Link to comment Share on other sites More sharing options...
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