progressive muscle weakness

Discussion in 'Fibromyalgia Main Forum' started by Jennyflower33, May 13, 2006.

  1. Jennyflower33

    Jennyflower33 New Member

    hey guys, i guess i just want an honest answer here. i have been diagnosed with CFS...but i have had muscle weakness which has proigressively got worse, even tho i do walk everyday. its not as if they are weak from lack of use. it started about 2months ago in my legs but now its all over. in my hands and feet, arms and legs. its harder to lift the kettle and use my knife and fork. my legs are heavy and weak to lift i really dont think this is a symptom of CFS...i think it sounds like ALS. harsh but true. my left leg is also heavier and weaker than the right. i guess i want a straight answer - does this happen with CFS or not? i dont have muscle pain at all, altho i do get a burning sensation in my arms now and then...some answers would b much appreciated!
  2. insanelady

    insanelady New Member

    Hello Jenny
    Years ago i was diagnosed with chronic fatigue syndrome. It can leave you like that. For a whole year I did not have a life other then the bed, or couch. It took all my willpower to shower and shave my legs. I lost a lot of weight also because I was too tired to eat most of the time. If it were not for my mother in that year I do not know what I would have done.
    When I was at that point I was so weak so that made my arms and legs weak also.

    Of course now I have Fibromyalgia. I do not know about the burning sensation with chronic fatigue though.

    What has your doc said to you or have you seen him yet?

    God bless you and I will put you in my prayers.


  3. Jennyflower33

    Jennyflower33 New Member

    i guess i need to see a not confined to my bed from CFS (if CFS is what it is). the muscle weakness is just my worst the weakness isnt from lack of use if u knwo what i mean...thank u for your reply....i strongly suspect muscular dystrophy so i am def pushing for an appt with a neurologist!
  4. elliespad

    elliespad Member

    Muscle weakness is my biggest problem. Have many other problems, but that is what keeps me from living my life. I used to describe to my docs that my legs felt like there were cinder blocks attached to my feet they felt so heavy. I have seen 5 Neurologist, had every test they give, multiple times, except for brain MRI. I'm always thinking they are missing something as I am SO Neuroligically impaired.

    I had years of CFS then finally dx. in 1988. Later added the Fibro. Disabled since 1989 at age 31. I use natural supplements now to control my hundreds of symptoms. The one thing I just cannot improve is my severe muscle weakness. It is hard to hold arms up to do hair, sometimes hard to get hand up to face to eat. Always have to have back and arm support when sitting. Walking and getting up from a chair is the worst. So yeah, it goes along with the CFS, but there is GREAT variability from patient to patient and from year to year.

    I concentrate my natural treatments on things that help my body make Neurotransmitters and things that help the body to detoxify. Keep hounding your doc for tests if you feel they are missing something and never stop looking for your cure. I believe it's out there.

    **Just want to tell you I have a strong history of pesticide exposure (read my bio) and this is strongly connected to my problems.
    [This Message was Edited on 05/14/2006]
  5. Jennyflower33

    Jennyflower33 New Member

    hi, thanks for your reply...its seems like your weakness was to do with the pesticides then? ive never heard of anyone with CFS who has muscle weakness like i have....altho ur weakness does sound alot like mine u had other things going on. i don't really live near any pesticide places.
  6. NyroFan

    NyroFan New Member


    I have CFS along with FM: my muscles are the same way.
    Some days I can hardly move off of the heating pad.
    Do not stress out over it, some things help it, some things hurt it. I have heard that magnesium can help, but I am intolerant of it.

    Better days are coming!!

  7. Jennyflower33

    Jennyflower33 New Member

    hey nyro,

    what was your muscle weakness like? was it always there or did it come on later on in CFS? mine was one of the first symptoms and is still here....and has got worse! my muscles are very weak and its harder to lift things and weash my hair and stuff. its pretty horrid!

    sorry just kinda just dont seem right.
  8. lovethesun

    lovethesun New Member

    above my head.I can't pour milk if it is a full gallon.I only have FMS.Is this related to both or cfs?Linda
  9. mbofov

    mbofov Active Member

    Get checked out by a neurologist, but also if you are taking any prescription meds, research them. Statin drugs (used to lower cholesterol) can cause severe muscular weakness and damage.

    Read the fine print about any and all meds you are taking. My mother was getting chronic bladder infections and having difficulty urinating and I was the one who discovered it was caused by one of her meds (Aricept). The doctor didn't know about it. I had to read the fine print of the package insert and there was one line about it. She hasn't had an infection since the Aricept was stopped.

    I have CFIDS, and at various times have been quite weak due to weakened adrenals, but my energy would come back when I took adrenal glandular supplements. Your weakness sounds a little different from that, but weak adrenals are a possibility.

    I also have "Post-exertional malaise" - get quite exhausted after exercise but again that sounds different from you.

    Anyways, I think you should see a neurologist but also read the fine print about any drugs you are taking --

  10. lenasvn

    lenasvn New Member

    We have a constant lack of oxygen in our muscles, this is why this happens. No muscle can function normally without sufficient oxygen. It comes in both FM and CFS.

    I posted about a month ago about my legs while I was walking. They turned into led after a couple of blocks. I have to pull myself up on the railing slower than my grandma to get up one flight of stairs.

    I was once a track runner.

    There are times when I flare for months and it gets really bad, then I get better days where I can do some things with reasonable (what is that?) difficulty.

    B vitamin complex and plenty of water helps some.
  11. obrnlc

    obrnlc New Member

    hi jenny--i have also experienced the "burning sensation" in the muscles of my arms, and really thought my muscles were deteriorating, as i can (and others in physical therapy also) see an "indentation" in my upper arm (deltoid muscle). mine is mostly right sided, but i am right handed. I had a muscle biopsy, which was essentially normal but for minor abnormalities that required "clinical correlation"--DUH!! thats why i was there!<p>
    of course, all disability companies i am doing battle with took this as a "normal" test result! I have been to one neuroligist who was worthless (one dis. company made me take him dis. papers and forms on my first visit, so he totally blew me off!)<p> one test that should be done for you is a CPK, which shows a high reading in the blood if there is actual muscle damage or problems (it is an enzyme, done with a simple blood test)<P> My new pain doctor detected some abnormalities neurologically (very subtle, though, story of our lives!) and is sending me to a different neuroligist who will be more thorough.<P> I also experience the profound muscle weakness, mostly small fine repetitive movements like peeling potatoes, brushing dogs, combing hair, and yesterday was DONE IN by peeling and eating a grapefruit! I also need full support of arms (especially right) when typing, driving or anything and need to sit in a full support recliner most of the time. No disability company will believe that, because i can do things for an hour or so (SOMETIMES!!) and can actually lift large objects easier than small fine hand and arm movements. Sounds crazy but true!<P> the muscle weakness is actually muscle ENDURANCE and when taking a "STANDARD" functional capacity exam, or dr. eval, they want you to lift arms over your head, and the length of time you can actually hold them up isn't taken into consideration. I also drop things constantly, trip over anything because my right leg doesn't "lift up" normally when walking every so often.<P> So--in answer to your question, some basic tests of muscles (CPK, brain mri, muscle biopsy) to rule out other things would certainly be in order, along with a visit to a GOOD neurologist, preferably one skilled with FM/CFS, but your symptoms do happen with this crazy illness that no one believes in, so good luck to you and keep us posted. Nice to "meet ya"--L