More on Muscsle Weakness

Discussion in 'Fibromyalgia Main Forum' started by rdthewave, Feb 9, 2003.

  1. rdthewave

    rdthewave New Member

    Hello to everyone.

    I'm new to board and glad I have joined. As many sites as I have visited I havn't heard a lot of discussion on severe muscle weakness with CFS until this site. I've gone back over previous posts and Marcus if you read this I would like to discuss this with you further. Next month will mark my 7 year anniversary with CFS.....I don't know where the time has gone....unbelievable....it's all a blur. Muscle weakness has been a major problem for me and I havn't come across anyone that has it to the degree that I have. In the beginning the weakness would come and go and it only affected my left side....then gradually all my body became affected but only after too much exertion.......now I don't even have to exert my muscles.......they are always weak.......and the weakness has progressed. The muscle weakness I have now is not the same as the muscle weakness I had previously.......it is hard to explain this. I have episodes where I can barely lift my arms or open my hands......these episodes are very scary.....it's as if my arms are being pulled down with weights and I have lost almost all strenghth in them....it's almost like I need a sling to support my arms...also its as if my muscles are frozen.....you know when you've been out in the cold or snow and your hands have gotten so cold that you can't use them very well........that's how my whole body feels. I was sure for awhile that I had MS or something else but after seeing 7 different neurologists over the years (had all the tests) I know I do not have MS. I know enough people also with MS after going to support groups.....but I never really could relate to them. I know what I am experiencing is the result of CFS........I have all the other classic 100 and 1 symptoms. When I stand my legs are so weak they don't feel like they will support me. Before, this was something that would come and go but like I said it has progressed and become a permanent thing. I do know after research that CFS can cause demylination. (sp?) I did not know this before. I know this is true for me. I will never stop being amazed at how bizarre this illness can be and with that I would love to give all of you a purple heart for each year that you've endured this illness.

    My heart goes out to all of you.

    Tammy
  2. karenatk

    karenatk New Member

    Tammy, I can relate to you. I have FM with muscle weakness in the right side of my body. Every doctor I have seen has told me it was not normal to have muscle weakness with FM. I have had every test for Ms and everything was negative. It is a struggle to drive and press the brake in my car. I cannot hardly feel what I am doing. It is a horrible feeling and you feel like nobody belives you because all of your test come back negative. I have just come to terms with it and I dont even mention it anymore because I could not get any help. I hope someday we can all be cured.
  3. Hippo

    Hippo New Member

    I have horrendous muscle weakness. Sometimes I can hardly walk, and it's not from pain, it's from WEAKNESS. Sometimes I can't lift my arm to comb my hair. It's quite bad, and usually people don't believe me when I try to explain it.

    Hippo
  4. dolsgirl

    dolsgirl New Member

    Most worse first thing in the morning, improves through-out the day, but never goes away. dolsgirl
  5. mersey_ferryman51

    mersey_ferryman51 New Member

    Hi Tammy,

    Your description of your muscle weakness is almost a mirror-image of my own!

    Mine is on my entire left side, and along with all the other symptoms of my fibro, it's overwhelming at times!

    I'm a big, strapping, 6' tall guy, and sometimes that left side of mine makes me feel more like a weak kitten than a grown man!

    Larry G.
  6. Fibromiester

    Fibromiester New Member

    I've had FM for a long time, with the bouts of CFS, where I could hardly get out of bed and had the flu symtoms...
    But recently I had occaisional times when my right leg gave way when I was walking-- two times I fell! and I can't open jars with my right hand, or HOLD the jar, to open it with the Left! My right arm gets SO painful and weak while I'm driving, or after moving this MOUSE around for a couple of hours! And my Restless Leg Syn. is always worse in my right leg....I've been getting weaker, overall, this past year. My pain has gotten worse, too.
    Fibromiester
  7. marcus1243

    marcus1243 New Member

    I'm sorry that you're going through this, and I hope that there is some rehabilitative therapy out there that will recover some muscle strength for you.

    Let's look at this logically: there are three main causes of muscle weakness. The first is neurological. Typically, a demyelinating disorder would present with very pronounced FOCAL weakness, i.e. a weak arm or leg, as in MS. I don't think you have MS. Neither do I think you have a chronic demyelinating polyneuropathy. You no doubt have had the work-up for it and come up as a negative. Which is great.

    Secondly, there are neuromuscular disorders such as ALS, Muscular dystrophy etc, which again involve the destruction of anterior horn cells and related axons, effectively compromising motor function. These will be picked up with EMG, which I'm sure you've had.

    Thirdly, there are inflammatory disorders of the muscles and glycogen storage diseases like McArdle's, MADD etc. I'm guessing that you've been profiled for ESR, CK etc. So that one is ruled out too.

    So where does that leave us? CFS. Which is now understood to be a chronic dysfunction of brain chemistry and disregulation of the immune system. (This according to the UK's top CFS specialist, who I saw yesterday!). Now, when you have an immune system that is fighting a 'phantom' virus (causing sore throats, swollen glands etc), one of the results is that the over-stimulated killer T-cells secrete cytokines, which have a pronounced effect on muscle strength (as in the flu). Long term secretion of these cytokines into the muscle tissues WILL CAUSE MUSCLE WEAKNESS.

    I believe that what you are suffering from is actually a disregulated immune system which is effectively compromising your muscle strength in a body-wide systemic fashion, through the secretion of cytokines by your body's defences.

    Now, where you go from that is another problem, and one I'm not sure I can help with, but you need to do everything you can to support and nurture your immune system back to its proper functioning. Not easy! But it can be done. I'm on a regime which is helping me a lot at the moment, but I have Fibro rather than CFS, and we're all different.

    Try looking up CYTOKINES for further research on the net. Sorry I couldn't help more, if you have any further questions please post here.

    Best wishes,
    --marcus
  8. Lendi

    Lendi New Member

    My neurologis swore I had polymyositis, tests showed marked weakness in upper (proximal) muscles. But, the emg didn't show a thing. I know that sometimes I just fall over I get so weak, and I can't get up off the floor. Guess it's just one more thing to adjust too. I do feel better if I do stretches and gentle movement. I think my muscles got weak when I was in a long, long flair and am just now getting them a little built back up. But, I'm no where near where I was. A flight of stairs sends me in a flair so I don't push it. Oh, I have CFS. I know it's scarey. But, it's easier when you know others are going through the same thing. Gentle hugs, Lendi
  9. Rosesark

    Rosesark New Member

    Can really relate to you. Mine started in my right leg (calf), then moved up into thighs and then the left leg, now my upper arms are being affected. I am still being tested, but rheum thought CIDP and Fibro and sent me to a neurologist, who did EMG and MRI and told me it's a connective tissue disease and to go back to rheum and will do that in march. I am to the point that i havce to have a scooter to go into my back yard or to go anywhere with my husband. I have to use the carts in the grocery. My legs get weaker and weaker like they will not let me take another step, and now i can't chop vegies or mix with my arms like i used to. My legs and arms look fine, so it's hard for people to realte to us. I am hoping for a diagnosis when i go back to rheum. They have already said i have sensory motor neuropathy. You are not alone. My insurance paid for my electrical scooter. My primary wrote a prescription for it with the diagnosis---fibro and neuropathy, and it worked, they paid for it. That may be an idea for you?? It was a life saver for me. Good Luck. Rose
  10. Bellesmom

    Bellesmom New Member

    I have gone thru spells where I step and almost fall to the ground. The 2 or 3 times I am able to get to store to grocery shop in a month I sure hang onto that cart for dear life!!

    I have most of the weakness from the knees down and from the elbows down. It is very scary because I have never been able to convince my PCP of all this. He just kind of looks off into space when I try to tell him all the symptoms I have.

    Have you ever picked something up and it just goes flying? That happens to me every now and then also.

    So far this has gotten a little better during summertime but in the Pacific Northwest (Washington state) we don't have a very long summer. This summer will be my 3rd year with CFIDS/FMS so we'll see how it goes. Anyone else notice even a little change with better weather as far as the muscle weakness?

    I keep thinking if I put in my 2 cents worth and read everybody else's 2 cents worth I'll find something that helps. Every now and then that does happen, so thank you soo for your input. I think it makes a lot of difference.

    Pam
  11. bonwar

    bonwar New Member

    I get the muscle weakness thing too sometimes. I call it feeling "boneless" as if all my bones have melted away. I just lie on the sofa all day like a squid. :)

    I can't imagine what it would be like to have it all the time!
    :-(

    bonwar
  12. joyof3

    joyof3 New Member



    weakness has been my biggest problem. it all started
    in summer of 2001 after the birth of last baby.
    My arms,hands,and legs my hands being the worst for
    weakness.

    it does come and go it also is worst during my monthly.
    I have not had a EMG as of yet.
    My DR also thinks with the fibro i my have carpul
    tunnel, but i don't have the symtoms.


    I prey soon they find a cure for all our DDS.


    with all my respect and love,
    stephanie
  13. maryfranf

    maryfranf New Member

    Hello to all, this is the first time i have posted..you dont know how glad i am to have found you...I have had this for at least five years....the weakness didnt start till last year though...i cant believe how many of you also have this muscle weakness...It is such a relief to know there are others going thru the same thing..my muscles get so weak i feel like i am going to fall down..I am at the point where it is hard to do anything...also has anyone had a lot of weight loss with this..the muscles in both arms had atrophied, because the pain was so bad, i could hardly stand to move my arms..i am doing light exercises and the muscle is returning in my left arm..but not my right arm as yet...I lost down to 87 pounds and am having a terrible time gaining it back...most of the time all i want to do is just lay on the couch...also does anyone have ibs with this..it seems to have some connection with the way my food is digesting...if anyone would like a penpal..please email me at moe40_98@yahoo.com..I am so glad i have found all of you....Mary fran