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is this muscle weakness really CFS or is it something else?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by karlish, May 26, 2012.

  1. karlish

    karlish

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    Hi everyone.
    I've just joined this forum, I'm glad I found you! I have been dealing with this crazy ilness for about four years now, I am 32 but I consider myself as dead since age 28. it has kept getting worse and worse. At first doctors didn't know what I had, I got every single medical exam available on earth MRIs, EMG, blood work, muscle bipsies, evreythig always comes back normal! I have been tested for MS, Myasthenia gravis, myopathy, ALS, you name it... I do not have ny of these, according to doctors. Yet after three years of excruciating pain, muscular and nerve pain, from head to toes, i developped since the last two months a very severe weakness, to the point where I can hardly stand on my feet, I can't hold anything in my hands, my legs feel like noodles, I can't sit down either, as my back, neck and shoulders muscles are too weak to support me. I also developped this very weird feeling as if I am weightless, like a balloon, and as if my limbs are not there, not part of me anymore... I also noticed some muscle atrophy in my hands and in my feet, it is clear to me that those muscles have atrophied but my neuro said I do not have amyotrophy as I do not correspond to the "scientific criteria" of amyotrophy (again just got nother EMG and another muscle biopsy both negtive last week). So he is sure I have chronic fatigue syndrom. But as I have been reading through the Internet, no one seems to complain from such weakness, you all seem to still be able to have some sort of life, and not a weakness as debilitating as mine... Do you think I could still have CFS or do I have some mysterious new disease that no test can identify, because that is what I am thinking... Thanks a lot for your help.
    Also, I did not have any normal day since everything started so absolutely no sign of remission whatsoever, if I had CFS wouldn't I at least experience better days? Do you lso experince a feeling of having water thoughout your body?
     
  2. Vinodray Thakker

    Vinodray Thakker

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    No promises. But Google 'Oil Pulling', read and understand thoroughly. Take it on board.It should help. Let me know the outcome.This non medical system helps with most of the symptoms.By the way, any person/s out there has experienced and cured naturally the symptoms of Loss Of Smell and Taste (Due to nasal polyps), I would be obliged.

    Good Luck
     
  3. xchocoholic

    xchocoholic Senior Member

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    Welcome to the forum. I'm not sure what you've been reading but some people with me/cfs are bedridden.
    I can relate to the muscle weakness you're describing. Long story short, gluten was causing mine. I'm not
    sure how long I've been gluten intolerant or a celiac because I wasn't tested until I'd been totally disabled for
    appr 18 years. I used a motorized cart from 1990 - sept 2006.

    Theglutenfile can explain this. Tc .. X
     
  4. nanonug

    nanonug Senior Member

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    First of all, I am very sorry to hear about your deteriorating condition.

    Two quick questions:
    1. Where you ever tested for vitamin B12 and folate deficiencies?
    2. Do you have any gut issues?
     
  5. ukxmrv

    ukxmrv Senior Member

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    Karlish, did anything happen 3 years ago to start the symptoms?

    My experience was that I was a completely well and active person until a virus hit me. My illness has lasted nearly 30 years with no remission and few "good" days. I'm not experiencing periods of feeling weigthless but the sensation of water through my body is one that I know. I'm swollen all over and my stomach is so large with fluid that I swish when I walk.

    The muscle weakness you describe has been there - in degrees of intensity though. Pain has been a major or a minor feature of the illness. It's hard for me to tell if there is any muscle wasting as I am so swollen.

    Why it would go from excruciating pain "only" to muscle weakness is a mystery to me sorry. I'm more used to the moderate and extreme weakness of ME so what you describe is a normal presentation for me. Just don't know why it would take so long to kick in and so suddenly.

    Hope other posters will have some better ideas. There are doctors that I would see who are experienced about CFS and exclusions if I was in your position and could afford it. Although you feel as if you have had all the tests sometimes it is the experienced CFS doctors who have specific ideas of the best things to exclude.
     
  6. PNR2008

    PNR2008 Senior Member

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    I had a weightless feeling sort of, I called it the'' demon drops'' after an old amusement park ride. I would feel like I dropped 5 floors in a few seconds. At first it was a few times a day and even happened a few times while lying down but it escaladed once to about 100times in a day! I was nauseated and dizzy and very agitated. Never was sure of the cause as I have OI but I believe it was due to Paxil which was discontinued. It stopped but no one could figure out what caused or stopped it. I still get weird sensations with limbs feeling absent or weightless and I get numbness in circles around my lower calf that last less than a minute.Right now I have shaky head and hands "due to stress" , no Parkinsons or dystonia according to my nuerologist. But I am wrried about it.
     
  7. taniaaust1

    taniaaust1

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    Maybe the original poster could of just had FM to start with. A third to a quarter of FM patients end up developing ME/CFS with time (a FM/CFS specialist once said that to me).

    kartish .. remissions are uncommon but you are right, most of us get bad and better days (note.. it dont just appear to vanish thou.. a person on their good days will usually have to be being careful on how much they are doing and even on those days usually be getting some symptoms)..

    The kind of symptoms you are having can happen with ME and if your condition hasnt ever stabilised yet.. you may be like in a permanent crash state (so not noticing the ups and downs of the illness as such).
    Ive had long stages of the ME in which I couldnt stand (due to weak legs).. and times where I couldnt even hold my head up due to neck being too weak to do so. In those with ME.. it isnt unusual for someone to describe legs feeling "like noodles".

    Do you have a lot of other symptoms as well? (as if you only have weakness and pain.. you probably dont have ME.. it usually gives a lot of symptoms with the more severe one is, usually the more symptoms it has). Check out http://wwcoco.com/cfids/bernesx.html

    This thou it seems it can happen in ME (Ive had parts of my body swell at at times eg one of my hands used to swell).. it is not common in ME. Keep seeking other answers. (maybe have some tests to see if you have some of the common ME abnormalities showing up on some of the tests.. that can help point to confirm that it could be ME you have eg Rombergs test, EEGs, reflex tests.. those with severe ME tend to have certain abnormalities commonly show up on tests).

    I used to have a lot of trouble with that. Things like holding a baby .. I used to not be able to do due to weakness. I also had an neuro issue where my hands would like just suddenly let go of objects I had hold of.
     
  8. karlish

    karlish

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    Hi everyone\
    Thank you very much for your input! Yes it's possile I first had FM efore switching to ME, I don't know how FM can e painful ut I had really excruciating pain, I would scream from pain, thank god, i on't have that much pain, it went away y itself suddenly, ut only to e replaced by extreme weakness.
    I remeer efore everything started that I had an endless flu, fever and coughs that antiiotics did not stop... and then few weeks later, i started ahving headaches and weirdnerve pain...
    Yes I have tons of other symptoms, I have severe POTS and also edema all over my body, probably from water retention. severe fatgieu, night sweats, loaters, blurry vision, teary eyes, bloating, stomach issues (i used to have frequent vomiting but that has stopped)... I was not tested for B12 deficiency though you're right, I should get that tested but I'm not sure if that would explain all my symptoms...
    Does anybody have water retention too? How is taht treated? I tried some antidiuretics a while ago but just felt they poisoned me even more...
    Thank you so much everyone!
     
  9. roxie60

    roxie60 Senior Member

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    welcome karlish. there are many people here that can realate. I know how frustrating and scary dealing with all these symps can be. not doing good today so limited response. hope u get answers soon.
     
  10. taniaaust1

    taniaaust1

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    Most of us with POTS with this illness dont hold our fluids well and hence have low blood volume hence in my own case I dehydrate easy.

    I dont know if one could have low blood volume at the same time as water retention?? Best a doctor work out why the water retention issue.
    ..................

    I too started off with virally symptoms.. which went to severe pain (all over and everywhere after I'd had this illness for 9 mths or so.. both FM like pain along, with having inner bone pain and pain of skin to touch) .. That pain went after a few years but other symptoms stayed.
     
  11. nanonug

    nanonug Senior Member

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    My opinion is that the best way to address all the problems you are experiencing is to try to find the cause. As such, here are my suggestions for testing:

    • Methylation Pathways from Health Diagnostics (doctor ordered or can be bought over the Internet):
      Will provide quite a bit of information about several important vitamin statuses, including B12 and active folates
    • Metametrix GI Effects Complete Profile (doctor ordered or can be bought over the Internet):
      Will provide a great deal of info about gastrointestinal function. The majority of people with ME/CFS have gut issues. In my case, fixing the gut issues a few years ago cured my CFS.
    • Viral panels for Herpes, Epstein-Barr, Hepatitis and the like (convince your doctor to order as much as he's comfortable with; these can also be bought over the Internet)
    Good luck!
     
  12. Calathea

    Calathea Darkness therapy

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    I'm concerned about your mental health after reading that you "consider yourself as dead" for the last four years. Do you have a diagnosis of depression or other mental illnesses? Do you have any support for this side of things?
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    nanonug likes this.
  14. nanonug

    nanonug Senior Member

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  15. hurtingallthetimet

    hurtingallthetimet Senior Member

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    welcome to the forum...theres alot of great people with alot of helpful info on here...

    i hope that you are doing well....as far as the muscle weakness i know for me, i use to be very active and exercise daily, plus very busy in general, since i can walk sometimes around neighbourhood but only with help of pain medications, but its nothing like i use to do. my legs and arms are much weaker overall, probably from the no longer being able to exercise...

    doctor has recommended pool, says its easier to exercise in etc. i dont have access to a pool, but if you are still able to do do something like that check with your doctor and see what he says maybe it will help you.

    take care and again welcome : )
     
    karlish likes this.
  16. karlish

    karlish

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    nanonug, I have been evaluated for depression and I don't have it, I am dead meaning I am socially and professionnally dead, no "productive" life on these sides, secondary to my illness of course... Otherwise, I'm still happy to be alive...
    Thank you for those links, how efficient is it to treat any methylation issue? I'm asking because when all this started to get serious, I followed the "lyme disease" path for a while, with supposedly LLMD, based upon "clinical dignosis" although I do not test positive, I did spend huge amount of money in various tests, antibiotics (which made me significantly worse, without any improvement, but that's because of my very strong chemical sensitivity, i can't tolerate meds anymore) and on vitamins, all of this without any improvement, i just got worse and worse...
    taniaaust1, I know that deep "bone pain" all too well, I had that for almost two years, and still experience it from time to time... it;s crazy , yet our bones and muscles are apparently fine...I got this bone pain even in my head, skull and face...
    Also I have read in various places that CFS tends to get better after few years, is that true? Can anybody be in my state of health, be deteriorating for 4 years and still get better? I'm not asking 100%, I'm just asking to stay alive as I really feel I'm going to die from this.
    Has anybody tried biomagnetism or any other treatment on the side? Thanks again for reading!
     
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Memory isnt good with names but someone on this board put it together with input from a few of us from here. I think its a great link and have linked it a few times now.

    cheers!!!
     
  18. taniaaust1

    taniaaust1

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    yes it is still quite possible to improve even if you are still on a downhill path after 4 years. What that quite possibly shows is that you "may" be doing something which needs to be changed.

    Cutting back on the things you do in life may help. If you can find the right supplements for you (it can be a nightmare finding the right ones, but I think most of us end up finding some things which do help a bit) it can help. Less life stress can also help some.

    Take care if you take up the others suggestion for swimming... sounds as if you are quite bad with it all right now and if you are exercise triggered. Swimming "may" make one worst. The Chlorine and also the heat esp if you have POTS of a heated pool, were also bad for my ME.

    The symptoms you have, remind me very much of what I call my early ME days (first years of this illness). .. I now days think back of that time and think something was certainly attacking my body from the inside back then, hence the inner bone pain, virally presentation etc... my ME presentation is now far different to what it once was.

    I improved over time and got out of that stage of my illness with Aggressive Rest Therapy. (enforced rest periods etc). Had I known what I know now, I would of also tried methylation protocols and tried to go the anti viral med route back then if I could of done so.

    The best chance of remission (complete recovery) is in the first couple of years, but you can improve from the state you are in now and still likely to do so... dont loose hope in that area.
     
  19. Sparrow

    Sparrow Senior Member

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    Welcome!

    I'm not up to reading through all of the posts here at the moment, but will say a few things based on what I was able to read. I can't say for sure whether you have ME, of course, but I can share my experiences in case it helps.

    Some of us get very, VERY ill. I was at at a stage where I was unable to lift my own head, or even change position, etc. I was too weak to hold up a cup. I can definitely sympathize with the kind of muscle weakness you are describing. And it definitely felt like I was existing on the precipice of death for a while. Had I known then what I know now, I would have given up even more of my existence to just REST. No pushing through to the point that I had extra symptoms or discomfort or felt strained because of it. That would have meant, for me, that I would have been doing pretty much nothing but lying there thinking for a very long time, but I probably would have bounced back faster. I had to learn to do it anyway, in the end. If your weakness is due to ME, then I would very strongly encourage you not to test your limits at all for a while (no matter how pathetic those limits may already seem) and just take it as easy as possible and then some until you're out of this critically ill state. I think I had truly run my body right out of energy to the point that just keeping me breathing was tough on it.

    There are some treatments out there that might help, but truly I think when your condition is SO precarious that your efforts might be better spent actively resting than continuing to see experts or search for answers (not that I probably could have actually done that - I kept looking and learning). Not forever, maybe, but it might be worth a trial - if you manage to do nothing but rest (and truly rest - not strained by computer use, tv, talking, etc.) without exception for some weeks and you're still getting worse then maybe keep looking. I just think continued activity is the easiest way for us to run ourselves into the ground. And for all that I also take a billion supplements, I think less straining against my limits and more true relaxation produced the most significant improvement of anything I've done. I truly think that the more we push, no matter how little we think we're doing, the further down we go. Doing less seems to be the only way to give it a chance to turn around (though other interventions may be needed for some people, particularly for more significant improvements).

    Good luck!
     
    Bunchy likes this.
  20. ukxmrv

    ukxmrv Senior Member

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    I know what you mean Karlish, about being dead socially and professionally. There are so many of us going through a "living death" at home trapped like in a prison.

    Also know what it is like spending a vast amount on tests and treatments just to find that one is left in deteriorating health with even less money.

    4 years is very early in the disease but at the same time CFS and ME have no certain cures. It's just impossible to tell if you will recover at all or even recover enough to lead a semblance of life. A family member of mine has recovered enough to work part time and have a very small social life and she is a happy woman. None of us would choose to have this little quality of life and maybe we will need to settle for a minumum amount instead in the end. That is if we get that far and don't spend the rest of our lives trapped at home.

    There are always new treatments to try. Had no luck with antibiotics myself for a long time and then more recently a small success and then only combined with an immune modulator and an antiviral. Biomagnetics was a small fashion in treatment in the late 80's/early 90's but I saw no cures. Treatment has moved onto other things.

    If you read the threads on the group you will see lots of possibilities on treatments that some patients find useful. Hope you find something here.
     
    Bunchy likes this.

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