How many here are actually disabled with Fibro?

Discussion in 'Fibromyalgia Main Forum' started by marcus1243, Dec 17, 2002.

  1. marcus1243

    marcus1243 New Member

    Just wondering because my own fm (if that's what it is) is progressing at an alarming rate. My legs are very weak now (all the time) and the muscles in them are very painful. Similarly, I can barely hold my arms above my head for any length of time without them fatiguing so rapidly, I just can't hold them up anymore. This bodywide muscle weakness is getting scary. I'm just hoping it doesn't get much worse. I've just been on an MS board, querying whether my sx's seem familiar to them and everybody said they thought I had fibro. If this really is fibro, it's progressing damn quickly! :(
    --marcus
  2. dlizard

    dlizard New Member

    I have fibro... dx by rheumie.. *I* think its progressing for sure although my rheumie says it doesn't progress... I say who you gonna believe... someone who has it or some "nut" doctor LOL>>> I just filed for my SSDI cause I've been out of work now for about 1.5 yrs and I'm NO better and on some days much much worse... disabling.... you betcha! I can move around but my fatigue and frequent illnesses keep me at home and feeling like ( substitute nice word please)! Good luck!
  3. hbic

    hbic New Member

    While I am not totally disabled with Fibromyalgia, I am experiencing the same thing as you are. I am at a point in my disease that my legs quiver while standing and ache relentlessly all day, no matter what position I am in. And I do have days where the pressure of standing on my legs leaves me on the floor in tears. Fibromyalgia they say is not progressive, in the sense that it degenerative. However, the symptoms can worsen over time, even wax and wane, ranging in severity between non existant to completely disabling. If you need to have a referal from your Primary Care Doctor to see a specialist, then you demand that you get one if they dont offer. If you don't need a referal, then find a Rhuematologist in your area that takes your insurance and is knowledgeable and EXPERIENCED in treating patients with FMS/CFS. Good luck to you. We will all be praying for you.
  4. Information

    Information New Member

    Dear Marcus -- this sounds awful, and you are right to check the MS sites. But I wouldn't stop there if I were you -- please get yourself to someone who can diagnose this. If you do have MS, incidentally, I hope you will try apitherapy. But do be sure of what you have first. Another thought that occurs to me -- My fibro gets lots worse from exposure to mold, chemicals and cold and you may have something in your environment that is making this so much worse. If you are on food supplements, go off them for a few days to rule that out, also think about the foods you are eating (wheat seems to make many people a lot worse and even bring on symptoms when they are otherwise perfectly well.)Good luck. You are certainly in my thoughts and prayers. --Jo
    [This Message was Edited on 12/18/2002]
  5. marcus1243

    marcus1243 New Member

    - intrigues me. ALL of my symptoms (but particularly the burning sensations) have become much worse since beginning with B-complex and B-12 supplementation and Co-Q10. I assumed this was co-incidence, and that the B-vits were relatively harmless (I take 1000 micrograms of B12 a day and 1 B-complex pill). Do you really think these supplements could do that?? I thought they were supposed to help with burning & tingling!!
    --Marcus
  6. Bambi

    Bambi New Member

    I too get thoroughly disgusted with
    the articles and web sites that continue to spread the lie that FM is
    not progressive. I write letters to all of them every chance I get. I wrote to Mayo so many times they wrote and asked me to check the changes in their FM information. They
    are better but still not "there". If I could do half of what I was still able to do a year ago, much less five
    or ten years ago, I'd be very content. I am home bound now 99% of the time and my specialist agrees without exception that FM DOES get worse. I have tried all of the supplements and vitamins and none of
    them helped and some just made things
    worse. Since going to the pain specialist he has advised me to stay
    off all of them. His opinion is that
    they do help some, but few, and may
    just interfere with the medications I
    am on, or create side effects. I just
    urge anyone who sees an article or
    something online that says we don't
    get worse over time to write and set
    them straight. The "experts" for now
    are US who live with this DD 24/7![This Message was Edited on 12/18/2002]
  7. Mariah

    Mariah New Member

    FMS was dx'd for me back in 88 by a Neurologist and a regular MD. I never could hold a job down for long because of my illness but I gave up trying to work altogether a couple of years ago. I have FMS, IBS (diarreha 5-10 times a day average), MVP (take a beta blocker for that), RLS, Bipolar Disorder (mostly have depression with it), a rare scoliosis (C shaped), Degenerative Disk Disease, Polymyalgia, Costrochrondritis (sp) and a host of other not so fun conditions like a hiatel hernia, borderline hypoglycemia, etc.

    I'm currently seeing a Neurologist again for some problems I've been having...like Optic Neuritis (have had problems with this since 88, too), muscle weakness, fatigue, tremors in fingers, incontinence, etc. I had an MRI and a Nerve Conduction Study and they were both normal. I'm seeing him again this Thursday....he did mention possible Myasthenia Gravis and said we can do test for that, too.

    The most disabling for me out of everything that is wrong with me is the FMS and back problems. Sigh....I sound like a whiney hypochrondriac. Anyway, that is what has been going on with me and why I can't work. (I'm 43 btw)
    [This Message was Edited on 12/18/2002]
  8. klutzo

    klutzo New Member

    I've been unable to work for 17 yrs. due to my FMS, but considering that the original prognosis was that I was declared dead at the scene of the accident that started it all, and then was told I'd never be out of bed more than 2 hrs. daily, I am doing pretty da*n good! I had to work my way back slowly and with great self-discipline. My basic FMS symptoms have gotten better (and yes, supplements have helped me a lot), except the neurological ones, which have gotten much worse in recent years. Because of that, I am now going to start on Neurontin to see if it will help with that.
    Holding our arms above our heads is often the most painful thing we can do, because for most of us, the Trapezius muscle is the most affected muscle in our bodies, and that is the one that lifts our arms. I can burst into tears if I try to hold a sheet out in front of me to fold it, so I don't. I just wad them into a shape that will fit on the shelf and forget it!
    In empathy,
    Klutzo
  9. susabar

    susabar New Member

    I am newly diagnosed and have been out of work since the begining of Nov. I have good days and bad days... I never know when I am going to be so bad, that I spend a great deal of time in bed. Before I left my job, there was a "policy" that you couldn't call out more than 3 times in a six month period ( Or some such thing) let's just say I'd have been fired by now. I've been at this job since 1988, and they expect 200% each and everyday. If I go to part-time I will lose important benefits, so I am sort of stuck between a rock and a hard place. I just don't know what the future holds. Hope I've helped...
    Love Sue
  10. nathan

    nathan New Member

    It's very hard to come to terms with our future when we're bound to this enigmatic and painful illness. I have been off and on out if work and it has kept me from my professional life goals since I started having problems when I was 24 yrs. old. Now I'm 31 and have been totally disabled for well over a couple of years. Working makes me sicker, so even if I go out and try, just standing on my feet for over an hour makes me feel like I have to go lay down. I am losing my home, lost me career, lost my friends, lost my life dreams, lost my prospects of raising a family and getting married. I'm pitiful for a grown man, but I love life and now am trying to do volunteer work and file for disability. Who knows what will happen to us, but we got each other, that I found is better than it seems. Good Luck, May God's BLessings be With YOu! -nathan
  11. tandy

    tandy New Member

    I've been out of work for 10 yrs due to FM and bad disks in my low back and neck.I too have the C scoliosis~
    Over the last few yrs i've gotten much worse as far as pain,fatigue,backaches,IBS etc...I have had a few surgerys in that time and I believe that puts a big damper on things.But all in all,my FM is for sure progressing!!
    I'd hoped to return to work-(within a yr or so),but so far I can not see that happening~I would surely need a very understanding boss b/c so many days I can't even leave the house!I have severe muscle weakness too.If I over due it with my arms.....which does'nt take much,my arm will sometimes tremble??just till it calms down then its ok.(odd?)Thats a symptom I never hear about?Is it me?Am I alone on this one??LOL
    Tracey
  12. JannyW

    JannyW New Member

    Yes, I too am disabled by FMS ... but I'm still battling with SSA to get them to agree with me. My symptoms have also gotten worse ... much worse over the last year than in the previous 20! And some days are worse than others ... the dampness seems to affect me, as does a rapid change in weather.

    Jan ^v^
  13. marcus1243

    marcus1243 New Member

    Yes, if I overdo it with my arms, they tremble. I think it's a kind of neuro-muscular fatigue. I've heard of plenty of people with fibro/cfs who get it as well. I think it's just part of the fibro dx.
    --Marcus
  14. DebP

    DebP New Member

    Im so sorry to be the bearer of bad news, but your symtoms are very much the same as mine. I have not been able to work for 2 years now. It does sound like u definitely have fibro....

    God Bless You,
    DebP
  15. PEACH

    PEACH New Member

    HELLO MARCUS: MY FIBRO TOO IS PRGRESSING EACH DAY AND IT DOESN'T SEEM LIKE IT IS GOING TO STOP DOING THAT ANYTIME SOON. I HAVE THE WEAKNESS IN MY LEGS BRAG FOG OVER THE TOP AND I HAVE A REAL HARD TIME WITH MY MUSCLES BEING PAINFUL BUT ALSO THEY AERE ALWAYS CONTRACTING AT THEIR WILL NOT MINE AND THE ARE HARD AS ROCKS IT IS VERY PAINFUL WHEN IT GET'S LIKE THAT AS IT JUST ADDS TO TENSION IN THE BODY IT IS A TERRIBLE INLLNESS AND I SURE HOPE THAT 2003 HOLD SOME DIRECT ANSWERS TO THIS ILLNESS AND MAYBE EVEN A CURE.
    SINCERELY PEACH
  16. tandy

    tandy New Member

    Thanks for letting me know that the trembling is a part of FM. I was'nt aware...I just knew it happens to me when I over do it,especially my arms.And I had never heard of others complain of it.Glad to know its not another disease!!!lol
    Warm regards,
    Tracey
  17. Information

    Information New Member

    Sometimes things that are ordinarily very good for us can do some damage when we are sick. The B vitamins can be made in yeast and yeast is a major source of both purines and phospherous. It might not be a bad idea to go off for a day or two, then reintroduce them by taking very small amounts and see what your tolerance is. And a word about yeast -- candida infections put lots of "home grown" yeast in your system and need to be taken real seriously. Check with your local health food store or some of the candida websites to find out more. In the meantime, stay away from foods with yeast or mold (cheeses) or that have been fermented (vinegar, soy sauce). Hope this helps! --Jo
  18. marcus1243

    marcus1243 New Member

    The B-complex I take is yeast and gluten free, but I'm suspicious about the supplements. My neuropathy-type symptoms have become worse since taking them -- coincidence?
    --marcus
  19. Information

    Information New Member

    Marcus -- Let me know what happens when you go off the vitamins for a while. I would go off everything if I were you, then re-introduce them one day at a time. That way, you'll know what, if anything, is causing a problem. If you do find a problem, it can be worthwhile to try a different brand of the same supplement in case the fillers are doing it. Again, if you introduce anything new, do it at a time when you have not taken other supplements just to be sure -- if there should be a reaction -- what is causing it. --Jo
  20. mapessd

    mapessd New Member

    Marcus I to am 10xs worse than last year I had a very dear friend who has had FM for years now tell me it has just moved on in my body. I was dx a year & half ago and did find out stress does afect me i left a very stressful life, moved to town house was feeling a little better but now i'm in soo much pain i can't stand it.. I to can not hold my arms up much less pick up my 13lb grandaughter. I still have two kids at home and i don't think its fare that they miss out on so much because i feel like crap allll the time
    Then to top it all off i have medicade to cover everything my ins. doesn't cover And because of some jerk at our state cap. i will loose it so now what does a person do w/$40 co-pay x6 plus the doctors. It just makes me mad i am trying to work and keep up with things and getting no where fast Oh well life goes on w/or w/out meds and drs. its just really going to suck
    Thank and goood luck Sue