Extreme and progressive weakness.

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I have been getting weaker and weaker over the last 8 years, gone from working a hard physical job (cook) 40 hours a week to being totally disabled and spending most of my time in bed.

Three years ago I was diagnosed with Inclusion Body Myositis, which has exrtreme weakness as its primary symptom.  However tests a few months ago do not show that I have the "inclusion bodies" in my cells that are typical of my disease.  Yesterday the neurologist said that he thinks I have CFS instead.  I am dubious.  Nothing I have read about CFS indicates that weakness is a part of that disease. I suffer from fatigue but I am pretty sure that it is the result of trying to use muscles that are dying.

So here are the questions:  Can people with CFS get up off the floor?  If you were lying on the floor, could you stand up easily?  Could you get up with difficulty?  Could you pull yourself up if you had something to hold onto?  Or would you simply have to lie on the floor till someone else picked you up? 

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  • Posted

    Hi Sunwyn,

    Sorry to hear of your struggles! 

    I've only had CFS since last year and was only diagnosed with it this year, so my experiences may not be so helpful since you've been struggling for the past 8 years. But I can say that my muscles are definitely becoming progressively weaker and is actually something I've been thinking about a lot over the past few days. When I first started experiencing symptoms from CFS I would just get muscle aches in my upper back, neck and collarbone area (which i still do) but then muscle weakness was a whole nother story. It seems that I've gone from feeling fatigued and thinking that was why my body felt so weak to constantly having weak muscles. Particularly my arms. Really battle just to use a knife and fork/eat at times, my legs are pretty bad too. Everything just feels completely dead and heavy and I'm just hoping that this progression doesn't continue because I don't have much left to give. 

    I have read quite often that weakness is a part of CFS. Do you experience other symptoms as well or is it mostly the weakness?

    I hope that you can find some solid answers. smile

    • Posted

      Hi,  

      I'm sorry to hear of your problems.  I would like to know specifically though if you can stand up from sitting on something very low (such s a curb or the floor).  That was the FIRST problem that I noticed, I was squatting and could not get up without a hand up.  That was 8 years ago.

      That was why I was initially diagnosed with IBM, in that disease the muscles at the front of the thigh are the first affected, which was certainly the case with me.  I am trying to find out if anyone with CFS has that specific problem.

      Thanks and good luck,

      Sunny

       

    • Posted

      No, I'd say mine's different where it's more noticeable in my arms. I can get up from the ground, I did it today actually. Admittedly I was worried before I sat on the floor about being able to get up but no I was fine.

      Good luck to you!

    • Posted

      Thank you very much.  I am glad you could get up, I would hate to think of you being stuck there because you were trying it for my sake.  

      Good luck!

    • Posted

      Please have doctor check for cervical spinal compression...

      It narrows spine entry by neck with stops fluid from reaching our ability to control our motor skills,hands,feet,thinking slows...

      Don't wait too long because it can paralize if waited for too long...merry Xmas everyone....

  • Posted

    I have not been officially diagnosed as am waiting on an EGG.  I have been told by my neurologist that he thinks I have it though.  I have terrible trouble getting up off the floor. My husband often says what are you going to be like when you are old. I'm 40 next year. Today my muscles feel weak all over. I exercise regularly so I know it's not a lack of that. 

    I hope you get something sorted soon. I am currently on vitamin d as my levels are very low. Have you had blood tests to check your levels of everything?

    • Posted

      Hi Helen,

      Thanks for answering.  I have had every test in the world, blood, nerve, muscle biopsy, x-ray, mri, and a bunch more.  My vit. b.12 levels were low recently, but that just has to do with the peripheral neuopathy that I also have, not with the muscle problems.

      Good luck, I hpe you get better!

  • Posted

    I have progressive weakness too My legs are the worse When I walk and my muscles become fatigued first they get heavy and then more and more painful with each step. If I try to push past the fatigue I become worse indefinitely
    • Posted

      Hi Norma,

      Thanks for answering.  I have that feeling too.  It's like my legs are made of lead.  I have a walker with a seat in it so I can sit down every couple of minutes.  Before this started I could hike 6-8-10 hours in a day over all kinds of terrain.  Now I can walk about a block.

      Good luck and I hope you get better!

  • Posted

    Can people with CFS get up off the floor?  If you were lying on the floor, could you stand up easily?  Could you get up with difficulty?  Could you pull yourself up if you had something to hold onto?  Or would you simply have to lie on the floor till someone else picked you up? 

    Hi Sunwyn,

    Prior to being diagnosed I was a fit, active healthy weight 18 year old who exercised several times a week, following the onset of symptoms I noticed immediately that I was having difficulty even standing from a sitting positioning, so I can relate to not being able to get up. If on the floor, I would have to rely on someone else pulling me up, I didn't have the strength to do it by myself. Since then I have greatly improved, but it's taken well over a year for any major developments. 

    Considering I was active & had fairly good muscle mass, my body was simply too weak & I had to rely on help to get up the stairs, get up from a lying position & couldn't dream of doing any exercise.

    • Posted

      Hi Abi,

      Thanks for answering.  I am sorry to hear about your problems.  I can't imagine how awful it would be to get something like this in your teens, I was in my 50s and it was hard enough.  I hope you get better soon.

      Good luck.

  • Posted

    Hi sunwyn.. I was diagnosed with chronic fatique and fibromyalgia back in the mid 1980s and told to give up searching for answers for my I was ill.. My illness was due to chronic fatique and fibromyalgia and had little available for treatment. I was much more than just tired and sore but physicians had little reason to explore my condition futher. Fast forward twenty five years. I have been in pain and stiffness for the past twenty five years while trying to deal with a loss of career and raising two children on my own while drawing a disability pension. One day it dawned on me that both of my young adult children were suffering also from similar yet different versions of a disorder similar to mine. Chronic pain, muscles becoming weaker..( my son who was quite the drummer was developing pain and weakness in his wristis without the nuerological signs one would expect) My daughter also always tired with fainting spells dizziness and autistic like behavioural syndrome. these are just a few of the things we were dealing with. It ocurred to me there must be a genetic basis to what we were experiencing ... that had never been brought up nor even suggested in all the years I tried to find our answers. Three months on the computer and I found a diagnosis that covered our physical symptoms rangeing from odd reactions to medications (anesthesia) muscle weakness racing heart (told it was anxiety) attention deficit disorder  sensory processing disorder it was even related to the way we looked.. small lower jaw, crooked or assymetrical jaw, high foreheads and more. Considered a rare disorder this disorder diagnosis has changed our lives tremendously.  Have you or your doctors explored the world of Ion channelopathies? My diagnosis is andersen tawil syndrome and my treatment in a nutshell is diet to avoid shifts in serum potassium levels downward. HIgh potassium natural foods low carb low sodium as insulin surge causes drops in potassium from carb loading and sodium competes with potassium in the cellular function. I also supplemen potassium daily while taking medications that help hold my potassium higher than the typical american .. I feel great at a 5.5 serum levels but can paralyze or become extremely weak when my potassium is shifting lower due to too much sodium too much carb (insulin surges) or resting after activity. My daily regimen now is the organic low carb low sodium diet with significant supplementation of potassium in the range of 200 meq a day 7000 to 8000 milligrams a day along with a potassium sparing diuretic.. This is considered a very rare disorder but I believe in all reality it is rarely diagnosed not rare.. I have met many others through my work on the internet. And many find signs back generations in their familys.. Many are consuming significatly under the amount of potassium and other minerals they need to be healthy each day.
    • Posted

      Hi Kattsqueen,

      I'm sorry to hear about your problems.  It is not what I have for sure, mine are very different.  Thanks for taking the time to answer. Good luck to you and your kids.

      Sunny

  • Posted

    Synwyn: if I were lying on the floor, I could get up with maybe a tad of difficulty. I could definitely get up by myself. And this, even though I've had CFS/ME for several years and recently had a bad relapse. Also, I've been on several online forums over the years, and I've never heard of symptoms quite like the one you describe.  Here are the symptoms I've read most often on these forums:  debilitating fatigue, trouble with sleep, digestion problems, joint and muscle pain, nerve pain (like tingling, numbness, etc.), headaches, cognitive problems (like "brain fog" and short-term memory loss), air hunger, rapid heart beat, and low blood pressure, which causes orthostatic intolerance. Do you have any of these symptoms? Do you have problems with balance? Is you speech slurred at all? Have you seen a doctor who specializes in CFS/ME? Have you had complete bloodwork done? Yes, CFS/ME is a diagnosis of exclusion, but on the other hand, I'd be careful about doctors who, just because they can't figure out what's wrong, assume you have CFS/ME.  In any case, I think you should see another neurologist for a second opinion. 
  • Posted

    Synwyn: I should have read all your posts before I responded to you. I see that you have had bloodwork done. So, seeing another neurologist might be a good idea. If they still come up empty, you could try to find a specialist experienced in CFS/ME. By the way, I love you sense of humor--in spite of all you're going through. Best of luck to you.
    • Posted

      Hi Jackie,

      This was the second opinion, or about the tenth or so, actually.  They've been testing me for the last three years for this and that.

      Problems standing from a seated position when the hips are lower than the knees is THE most significant marker for the three myopathies, DM, PM and IBM. DM has a skin rash, PM comes and goes and responds to steroids, IBM does not respond to steroids, gets steadily and slowly worse, and has "inclusion bodies" in the cells.

      I was diagnosed with IBM 3 years ago on the basis of the progressive muscle weakness. but I am getting worse much faster than IBM usually does.  It is a slow disease, taking 20 or 30 years to go from diagnosis to when the person becomes bedridden. So 9 months ago they did a lot of tests, including nerve conduction tests (torturing me with needles and measuring the nerve conduction) and a muscle biopsy.  The  biopsy did not show the damage that IBM usually shows so now they are thinking maybe I don't have IBM after all.

      I don't know which is more disconcerting, being told you have an incurable, untreatable, fatal disease, or going around thinking you have it for 2 years and then having them say "well, maybe we were wrong, maybe you have something else."  I feel like a yo-yo, up and down, up and down....

      Anyway, CFS has been suggested before, but now it is "well it must be that because we've ruled out everything else."  It still could be IBM, though, it was a very small slice of me they biopsied and it could just be that those particular cells are not affected.  Time will tell.  

      It might be CFS, but it doesn't sound like what I have.  I have also been diagnosed with fibromyalgia and perpheral neuropathy.  The last one to be ruled out was polymyalgia rheumatica, a strange disease with only attacks old people's arms and disappears when treated with steroids.  

      I finally talked the neurologist into giving me prednisone last month and after 2 days the soreness in my upper arm was GONE after a year during which it hurt all the time.  It seem that I did have PR after all but only there and it did not affect anything else because the prednisone did not help anything else.

      I told the doctor I wish he had given it to me months ago because I'd used up 2 1/2 tubes of IcyHot on it.  One of the quirks of PR is that is does not respond to any ordinary NSAIDS, only steroids.

      So now I really have no idea what I have, except that I keep getting weaker and weaker.  I do feel tired a lot but it does not seem like the overwhelming fatigue that seems to be characteristic of CFS. The neurologist decided to pass me on to the pain clinic.  So I won't be seeing him any more.

      I am sitting here at a "bistro" table, with the computer keyboard just below shoulder level, so I can rest my forearms on the table to hold me up while I type. Otherwise I will just fall over sideways because I have the muscle tone of a jellyfish, except for my calves which are hard and stiff like they were carved out of wood.  Is that wierd or what?

      I am supposed to be getting a new kind of pain med, but they sent the prescription to the wrong pharmacy again, just like they did last month.  I moved 9 months ago but no matter how many times I ask them to change my info they DON'T.  It drives me crazy, although in my case it is more like a short walk.

      Thanks for taking the time and trouble to answer. I do appreciate it.

      Good luck!

      Sunny

    • Posted

      Sunny: I'm so sorry you're having all these problems. I know someone who, I think, told me she has PR. She's been on Prednisone for quite a while. I know how frustrating the merry-go-round of doctors and diagnoses can be. It really sounds like you're doing everything possible at your end. Take care, and please post on this forum whenever you want some extra support.
    • Posted

      Thanks for caring, it helps to know someone else is out there.

      I hope your own problems get better.

      Sunny

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