Discussion in 'Fibromyalgia Main Forum' started by cats2595, Apr 28, 2006.

  1. cats2595

    cats2595 New Member

    I am struggling greatly with muscle weakness. Have had MRIs and nerve conduction studies to rule out muscle disorders such as MS, ALS and thank goodness, nothing was found but that has not helped my symptoms. It is incapacitating me, keeping me from doing routine things like grocery shopping, etc. I don't like being dependent on others for so much.

    I have had CFS/fibro for 16 years and the muscle weakness has always been a problem but over the past 2 or 3 years, it has worsened to the point that I am able to get out very little.

    Anyone who has this symptom, I would love to hear from you. Would also like to know any suggestions to help with muscle weakness.

    [This Message was Edited on 04/28/2006]
  2. zenouchy

    zenouchy Member


    Hi there. So sorry to hear about your muscle weakness. While I have not experienced what you have, I'm wondering if physical therapy would help? Starting out with very gentle exercise to get your muscles working and gradually building them up and strengthening them? It sounds like your docs have not given you the advice you need to move forward.

    The less you move, the less muscle strength you have and if your muscles are weak to begin with, it's going to just go downhill from there. My thought therefore is that some physical therapy will help you get gradually started moving without injuring yourself.

    Sure hope this helps and that you feel better.

    All the best,

    [This Message was Edited on 04/28/2006]
  3. abbylee

    abbylee New Member

    Just in the past few months my muscles have seemed to have a mind of their own. I can no longer lift my leg to put my foot in my pants. I have to sit down and pick up my leg with the opposite hand and vv for the other.

    Sometimes I turn to do something and one of my legs won't go. Then I start flailing around trying to find something to grab.

    Sometimes I stagger, sometimes I have this weird bounce. If I've been still for more than a minute, my muscles freeze and won't go where I want them to. I look like an absolute fool.

    I take Xyrem which is human growth hormone and I've wondered if it's affecting my muscles.

    I don't understand what's going on.

    [This Message was Edited on 04/28/2006]
  4. cats2595

    cats2595 New Member

    Thanks for your reply. It is frustrating. If you find anything that helps, pass it on please.

  5. cats2595

    cats2595 New Member

    Thanks for your input. I am not on any cholesterol-lowering drugs so that's not the cause.

    Take care,

  6. cats2595

    cats2595 New Member

    Thanks for your concern and your reply. I have a Pilates machine that I work out on, light exercises, 3-4 times a week for about 20 minutes. I really cannot tell a difference when I stick with my workout and when I get off of it once in a while.

    I also walk my dog a short distance each day so although my work at home is sitting several hours at a time during the day, I am not completely sedentary.

    Again, thanks and will be watching the message board for any other "helpful hints."

  7. lovethesun

    lovethesun New Member

    It happens in arms and legs.I can't do any housework or even cook for myself.My legs get too weak.I have to have my husband help me out of the bathtub If I take a bath.On a good day,I can walk abour 100 ft and then have to rest for a half hour.Linda
    [This Message was Edited on 04/28/2006]
    [This Message was Edited on 04/29/2006]
  8. elliespad

    elliespad Member

    Yeah, that's my greatest disability. Has always been, and getting worse each year. I have been able to get a grip on most all my symptoms, but can't do a damn thing to help the weakness. Have trouble standing long enough to wash dishes or prepare dinner. Getting up from a chair is horrible. I REALLY hate it!
  9. tinypillar

    tinypillar New Member

    I have this too sometimes. I've noticed when I have a day where I experience more weakness, my muscles spasm more at night, which equals more pain.

    Sometimes it's related to how much physical activity I've done that day (i.e. I did more than usual), and sometimes it has no relation.
  10. zenouchy

    zenouchy Member


    Wish I could have been more helpful. If you are doing exercises already and your body is not responding, I wonder if seeing another neurologist would help? Obviously, something is not working in your body that your current doctor is not identifying. I'm not trying to criticize your current doctor necessarily either because our bodies are complex and sometimes it's difficult to pinpoint what's going on with them. (I'm not sure if you've seen multiple doctors or not for your muscle weakness, but have you seen multiple doctors within the identical specialty?)

    A different neurologist may be able to find out what's going on with you. If he/she is able to, great! If not, at least you tried. Just an idea. My very best wishes to you.

    P.S. I love cats too!


  11. lovethesun

    lovethesun New Member

    I don't know how it is with cats but I've had a nerve conduction study,2 full body MRI's,a head Mri.going for another CT scan.I got seen by an orthopaedic surgeon-They found nothing.All they said was iy must be fibro-on the goodside I've been thoroughly checked.I'm about in the same boatI wish I could help.The only thing that loosens me slightly is a bath.(((((((((hugs to all))))))Linda
  12. cats2595

    cats2595 New Member

    I appreciate your concern. Having had this illness for 16 years, I really cannot name all the doctors I have seen and my main complaint is muscle weakness, as that is the most incapacitating. I have seen 2 neurologists, both doing the same tests. The last one did say that if nothing showed up on the EMG he ordered, then he would have to say it is coming from my CFS. At least there is no specific muscle disorder that has shown up. I wonder if changing hormones may be part of what is causing it to worsen, as I will be 51 this year and know I am experiencing some other menopausal symptoms.

    Anyway, thanks again for replying. As for cats, I have 3. One by choice and 2 were put out here as strays but I could not find homes for them so they became pets and my son and I enjoy all of them. Also, my name is not cats because I like cats, it is a combination of my first and last names. Just a coincidence!

    Take care and write again if you would like,

  13. cats2595

    cats2595 New Member

    Thanks for your comments. I'm sure you've read my other responses so I won't go into all that. IT is good to know that we have no muscle disorder, etc. As for a bath helping, I sometimes have to sit down to dry off. Maybe that's from taking a hot bath, who knows.

    Thanks for responding and have a good day.

  14. NyroFan

    NyroFan New Member

    My FM doctor gave me a low-impact cardio DVD which nearly kills me. I do it three to five times a week. Other than that I rest and then rest some more. My legs are aching so much I don't know what to do except drink loads of fat-free milk and magnesium.

    I will leave it up to the experts here.

  15. millennia

    millennia New Member

    That's actually what sent me to the doctor when I was finally diagnosed with fibro. I had been living with pain for so long I thought it was normal, thought other people just didn't talk about it, so neither did I. But my legs got so weak, they felt like jello. I could barely walk. What has helped me a lot is calcium pyruvate, body builders use it to build muscle.
  16. cats2595

    cats2595 New Member

    You said the calcium pyruvate helped you. I'm just curious how much it has helped. Before you started it, how restricted did your muscle weakness make you? How long did you take it before noticing results? How active can you be now?

    I'm to the point where I can't do routine things like grocery shop. I drive only very short distances when I have to. I have to lean against the kitchen counter to prepare the simplest meal, lean against the washer when doing laundry, etc.

    I've had CFS/fibro for 16 years and the muscle weakness has always been a problem. It was much less restricting until the past several years. I know it was always there but I compensated for it by not trying to drive or shop when I knew it was bad. Now it is a constant thing. It is not just in my legs but also in my neck muscles and arm muscles but I guess I notice it more because our legs are what holds our body up when we try to walk. I do have trouble sitting in a seat with a lower back, I need something to support my neck muscles if I am going to have to sit for a while. My son is graduating in June and I dread the graduation ceremony, getting there, sitting for an hour or so, etc.

    Thanks for your info and I am going to research the calcium pyruvate and may give it a try.

    All the best to you,

  17. frosty50

    frosty50 New Member

    I also have the muscle weakness. Was diagnosed with fibro around 16 yrs ago. I had MRI's Cat scans and also checked for MS. All tests were normal. The tests were all done before I was diagnosed with fibro. My muscle weakness has been with me for a long time.
    Hugs to you as I know what you are going through
    [This Message was Edited on 04/30/2006]
  18. spiritsky

    spiritsky Member

    I had it for quite a while also. Did all the same tests...At first I thought for sure is was the beginnings of ALS and then looked up all sorts of strange neuro disorders thinking it could be those. Finally after seeing to neuro specialists they ruled out and nerve damage. It seems to just be a common problem with CFS. But, since undergoing hormone replacement therapy for the last 6 months and finally getting my sleep problems under control, I no longer have muscle weakness and am doing very well and feel close to remission. Today, I went for a long steep hike in the morning with my wife, came back, cooked lunch, then washed all the windows on the outside of the house, then went shopping for I'm pooped but, it's a feel good tired...Muscles ache right now, but no weakness...

    Good luck to you...hope you find your answers...
  19. Jasmine

    Jasmine New Member

    I've had muscle weakness for many years and now I've been taking 2,000 IU of Vitamin D for the last 2 weeks and my muscles are feeling stronger and my breathing is much better. I have a severe Vitamin D deficiency according to my endocrinologist and it's curing my muscle weakness and muscle and joint pain. I'm so happy to finally find Vitamin D! I take the Vitamin D from CVS in a white bottle.

    Love, Jasmine
  20. meditationlotus

    meditationlotus New Member

    It helps me. I would be bed-ridden without it. Also pacing very important. But I cannot overdue, if I do I relapse for several days and my muscles are jelly.

    Also inability to stand could be neurally-mediated hypotension.

    Hope this can help.

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