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

Although some people with ME/CFS do get very weak and even bedbound with this illness, because of the severity of your weakness, my suggestion would be for you to get a second or even third neurology consult if you haven't done so already. Get it at a university-based neurology clinic (where they might be used to seeing odd cases) and pay out of pocket if your insurance doesn't cover it. You want to really make sure you eliminate every single treatable possibility before. This is your life; if you regular doctor can refer you to such a neurologist, that would be best but if they don't, find one and refer yourself.

Also, if you or your doctors haven't, review the following criteria and see if you fit any of them. As other posters say, ME/CFS is more than weakness and pain although those symptoms can be present. My feeling is that while some people who have ME/CFS are not diagnosed correctly, others are given the ME/CFS label by doctors mainly because they have fatigue. Just to be clear too, weakness and fatigue are not the same things even in medicine -- you can have muscle weakness without fatigue and fatigue without muscle weakness.

http://www.name-us.org/DefintionsPages/DefinitionsArticles/ConsensusDocument Overview.pdf
http://www.meassociation.org.uk/?p=7173

 

thanks again evryone! Hope123, did see aout five neurologists, had two brain and spinal cord MRIs, spinal tap, 2 EMG... nothing shows on these...But I stil can't believe CFS can put me in this situation and still think I have something else going on. I actually was convinced I had ALS , especially because of the muscle atrophy i have which is now very obvious, but as my EMgs are normal and my muscle biopsies normal too, I am left with the ME/CFS diagnosis...
That being said I do have most of the ME symptoms, not only fatigue and weakness, I also have sever POTS, severe chemical sensitivity, I have episodes of "black out", where I almost faint and literally have to lay on the floor, vertigo, dry eyes and dry mouth, burred vision, tinnitus, severe muscle spasms and myoclonus, I must have about 20 other symptoms..
ME can mimic other conditions too and I can't find any article linking muscle atrophy to ME, that's why I'm not convinced.. ...

 

Can you define "atrophy" as you're experiencing it?

I have had muscles go completely dead on me, when I was at my worst, so that it was literally impossible for me to move them even a little no matter how hard I tried. I was incapable of walking, crawling, or even rolling over for a while. I'm not sure if that might be similar to what you're talking about.

This truly can be a VERY severe illness, so it's definitely possible for it to get you into the kind of state you're describing. There are plenty of tales of ME patients who get to a point where they can't move, can't speak, can't swallow, etc. It can get pretty bleak.

Your symptom set certainly sounds like it could be ME. Not much else tends to come with that combination, as far as I know (chemical sensitivities, POTS, etc.). I would ask a few specific questions...
1) Do you get weird pressure, tingling, burning, pain, inflammation or other discomfort in your spine, neck, or head when you do too much mental activity (computer use, watching TV, conversing, etc. may be enough to set this off, depending on how severe you are)? Not all of us have this, but it seems common. Mine also comes with my head/face feeling "hot".
2) When you exert yourself, do you feel weaker afterward? And if you over-exert really badly past your limits (physical activity, mental activity, conversation, stress, etc.), do you feel super crappy the day after (often this feels like being sick with a cold or flu; I am also generally much weaker; other symptoms may be worse as well)? You may or may not have significant symptoms at the time of overexertion, so it can be difficult to make the connection sometimes. If you can identify that pattern, though, this seems to be pretty much a cardinal ME symptom, and one that distinguishes it from other things. Too much exercise/activity makes you worse.
3) Do you have any overstimulation issues from sound or light, where it is uncomfortable to be somewhere too loud, too bright, or too busy when you've already overdone it mentally? Not everybody has this by any stretch, but again, it seems like when it is present it's a good clue.

Is there any way you could make it to a specialist in ME/CFS (one of the few who is actually very learned about the condition)? I have a feeling they would be able to recognize pretty quickly whether you fit the mold, as they see so many of us and the commonalities between us. There are some great people in Miami, California, New York, the UK, and elsewhere. I would recommend being very cautious with travel if you're that weak, in case it really is ME/CFS and any exertion might make you worse, but if anyone was close by, it would be a great thing for you to get some actual knowledgeable treatment as well. There are lots of people here who could suggest specialists if you were interested. Most of us are very familiar with the top names from many parts of the world.

I would suggest maybe reading through other people's experiences here. That did a lot for me in terms of confirming the diagnosis I had been given, as over and over I found people describing even the weirdest of my own symptoms in a startlingly similar way to how I experience them.

This thread might help clarify what post-exertional malaise actually feels like. There are lots of other symptom descriptions scattered around, though we each tend to experience them slightly differently, and in different subsets. Good luck to you with your investigations. In the meantime, just in case it really is ME/CFS, in my non-medical opinion but based on what I've learned from doctors, I would suggest lots of extra water and some extra electrolytes to try to build up your blood volume if you're really thirsty, and as much rest and avoidance of things that make you feel worse or strained as you can manage. If it is ME/CFS and you're that severe, you don't want to risk pushing yourself over into a downward spiral you can't get out of. If it's not, then at worst you've had a little extra to drink and rested some, and that's probably not terrible for most illnesses.

 

sparrow, thanks a lot for your advice. My muscle atrophy is mainly noticeale in my hands, feet and forearms, the other places, I could explain by lack of use but my hands?!!! the bumps and balls that cover the finger jints are not there anymore...
I get severe burning pain and pressure all over, even in my head and face...after the pressure, i sometimes feel as if there was water or liquid pouring out of my muscles, it burns a lot! I also have tingling and some electric schocks...
I can't answer your second question as I can't exert myself anymore, i can't do anything without fainting...
I do not have any overstimulation issues with sound, i do have pbs with lights as my eyes start watering...

 

I aslo get a lot of pressure around my heart!!! my ECG is fine,,,

 

I am not a doctor, so obviously can't give you medical advice, and if you're unconvinced then obviously you would need to do everything you can to look into other options (I did too).

But...

In case the information is helpful to you, so far nothing you've described has sounded much different from what I've gone through. I hope you'll forgive me if I write a lot here, but I see a lot of what I've gone through in what you're saying (please don't try to read it through all at once if that's a strain on you). In my experience, if one weird thing is wrong with you, it might be some other illness. If EVERYTHING weird is wrong with you, it's probably ME/CFS. POTS, plus chemical sensitivity, plus inflammation, plus immune response, plus fatigue, plus muscle weakness, plus burning, plus extreme bloating, plus sleep issues, plus heart trouble, plus sweating for no reason, plus shortness of breath, plus extreme thirst, plus muscle twitching, plus vibrating sensations, plus trouble finding the right word for things sometimes, plus issues remembering things at the right times, plus, plus, plus... There just don't seem to be many other illnesses that affect so many different systems so severely. Most sources that deal with ME tend to just mention the same subset of core symptoms over and over, but there seem to be a lot of other weird ones that are common to many of us. And the full picture of them all together can be much more debilitating than some sources convey well.

I'm sorry about your hands. If you do have ME/CFS, then I don't think your atrophy would be from disuse at all. In fact, for me, it was the opposite. It was only the muscles I was using too much that gave out (mostly my thighs because I used them way too much trying to walk before becoming confined to bed, and occasionally my hands from typing or writing). I believe firmly that when your energy reserves are that low, there is a point that parts of the body just run out of juice and can't go on. I had my cellular energy production and mitochondrial function tested through Dr. Myhill (she has done some research around mitochondrial dysfunction in ME) around that time, and the results were pretty awful. Maybe if you don't use your hands for a while (which, I know, would be crazy hard to do) or at least reduce usage as much as possible, they'll slowly regain function. That's what happened with my thighs/hands. Your situation sounds very similar to where I was a year ago. I'm so sorry that you're suffering through that. It's an awful place to be.

If you're super ill right now, as I suspect you are given how deathly sick I felt when I was experiencing similar symptom severity to what you're describing, then even continuing to exist might count as "exertion". I know that I felt like just keeping my organs going must have been a terrible strain on my reserves sometimes. I understand what you're saying about not being able to "do anything". Even tiny things can count, though. When I was just coming back up from my lowest, I once triggered a Post Exertional Malaise backslide by trying to hold up my own cup. And I still trigger that awful burning sensation all the type trying to use the computer.

I say this in case what you have does turn out to be ME/CFS, and in case it helps. I know for me when my symptoms were SO constant and SO severe, it was difficult for me to make connections between specific things that were making them worse. Once I had recovered enough that I wasn't in a state of constant supreme discomfort, I was able to notice that things I was doing brought the worst of it back again, and learned to cut down on those things. In particular, I know that even when I thought I couldn't possibly do any less, I was still pushing too hard to converse, research on the computer, search for information about what might help my condition, write short replies to e-mails, etc., and it was putting me in a constant cycle of getting even worse. All of that stuff counts as draining for sure. So it may be that #2 is applying to you, but that it's hard to tell since just your everyday existence right now is over-exerting for you.

Rest hasn't cured me. I am still bed bound a year later, and still have a pile of crazy symptoms and even lying down, I still can't do anything for more than half an hour to an hour without triggering symptoms. But taking more down time as the specialists recommend (i.e. lying down, eyes closed. No TV, audiobooks, music, etc.) did help to take the edge off the worst of it. So long as I stay lying down and don't do much, sometimes I feel much closer to okay. And that's a huge improvement.

I really hope that you're able to find some relief as well.

There is a decent overview of the basics of ME here, if you haven't read this one yet (the $15 is not a requirement - you can click the link to read it if you are unable to pay):
http://www.iacfsme.org/Home/Primer/tabid/509/Default.aspx

Dr. Myhill has some general information in various places on her site about pacing, management, etc.
http://www.drmyhill.co.uk/wiki/Getting_enough_rest_-_an_essential_part_of_managing_CFS

Those might not be the optimal resources for your purposes, but they're the ones I can think of right now for a look at the basics so that you can see if anything they're saying hits home or helps. I wouldn't want to throw up too many links anyway. If you're anything like I was, you probably shouldn't be using the computer now anyway (but would regardless to get to the bottom of what's wrong with you).

Good luck, and hang in there. If there's anything specific I can share about my own experiences that might help you come to a more confident decision, let me know. In the mean time, I'm going to stop typing now and gently reprimand myself for the burning I've generated in my own head and spine.

 

karlish. Probably the best thing you could do for yourself is to some how see one of the world ME experts on this illness. If it turns out they dont think you have ME, they would be likely to be able to point you in the right direction of what you do have.

I myself thou i was severe... I never got bothered by muscle atrophy. I did thou loose my nice firm muscle tone due to being bedridden and my muscles went to like jelly (tap a muscle and it wobbled,, thou im not overweight even my calves wobbled due to that due to loss of muscle tone) but it wasnt like muscle wasting Ive seen happen in some things.

If you think you have something very abnormal there other then what lack of use does to muscles.. I suggest to link a picture to here to see if others do think your muscles are appearing strange or if their muscles are looking the same.

One question.. has your skin gone all wrinkly? Have you been worried about anything your skin is doing? Im asking cause there was a guy who used to come here from china. There was some severe kind of ME? or ME like outbreak being ignored there by the government so some had gone to the newspapers.. the symptoms were very like ME but a couple of different things really stood out to me in how they were describing it... a lot of muscle atrophy happening and also skin changing and going very wrinkly.

 

karlish,
Your situation sounds truly horrific, and I am sorry for your suffering. Your case does sound different than most cfs cases, but this disease is marked by many different variants on misery. I would echo others in recommending you see a cfs specialist if that is an option.

Have you ruled out mitochondrial disease and channelopathy?

best to you and your struggle,

JAH

and I thought I had seen a lot of doctors...

 

Hello

I have a lot of muscle weakness and atrophy like most ME sufferers. Its hard to use muscles when you're in constant pain, of course if you overdo it, you 'crash'.

Earlier on in my relapse my emotions, movements etc seemed "detached" from my body. It was like someone had cut all the nerves from my head to the rest of the body. Don't know if it was a combination of ME and depression, or just depression. My dr put me on AD's at the beginning and after about 6mths I felt reconnected. But that could have also been time? I don't really know.

 

taniaaust, yes, my skin is going wrinkly in my hands and at the base of my toes... that is where there is muscle atrophy, obvious enough so that I don't understand how my neuro still thinks I have CFS (actually he says if I had amyotrophy it would show on my EMG, and it doesn't)...Do you know what those Chinese guys had?
JAH, I had two muscle biopsies, there were looking for a myopathy (I don't know which type) but apparently my muscle tissues are normal...
Foggy, I would love to be able to stay on some AD, but I have developped such a severe chemical sensitivity that any meds that act on the nervous system sends me to hell... SO I am praying to feel "reconnected" some day...
Now as far as seeing a CFS specialist, unfortunately, I had to move back to Morocco where my parents are retired so they can take care of me as I was living on my own and there' s no way i can support myself anymore.
I can hardly imagine myself travelling, maybe I could have someone drive me to Spain or to france if there is any real specialist there, I don't know...
Thank you very much evryone, I really have to know what's killing me, I don't care what it is, i just wanna know, again i was ready to accept and ALS diagnosis as it was the only neuro disease that causes atrophy that I could think of, but apparently it's not...

 

Oh and I forgot to mention taniaaust, about skin issues, I have black spots on the base of my toes where there is atrophy... I really don't know what disease can cause lack spots on the skin and none of my docs seemed to care about that specific sign...

 

Wild guess: diabetic neuropathy?

By the way, I was not the one that mentioned anything about depression in my earlier post.

 

Okay... Black spots and wrinkly skin is NOT something I've encountered. Just the inability to move the muscle.

Is it possible that you have both? ...ME, and something else. That would make it really hard to identify, though, I imagine, since ME covers SO many symptoms. It might be difficult to weed through them and pick out just the other oddities. I'm sure people here could help, though, if that was the case.

Did you have a sudden viral start to your illness?

 

nanonug, i have een checke for diaetes several time, last one was three weeks ago, i have a perfect glycemia...
Sparrow, Yes I didi have a viral onset, but again every neuro disorder including MS, seems to start with a viral illness...
It's very possile I have sth else going on it just kills me to not find a doctor who could guess...as my exams seem normal, i m really thinking there was some sort of conspiracy against me...

 

are they pitch black spots or are dark spots which look more like bruising... Ive had both those two things.

The pitch black spots which end out after a while radiating outwards in certain places on the spots.. a doctor thought it was staph in my leg and antibiotics helped it. (it though kept on coming back but ended up being put on stronger antibiotics which finally got rid of it so obviously some kind of bacterial thing).

The other dark different kind of patch which looks more like a bruise which never goes away (but strangely gets darker when exposed to warm water). I havent been able to find out what it is... doctors just all say it isnt dermatitis.. a couple thought it may be fungal while another just said it was a bruise which could take up a year to go away.

yeah hands went very wrinkly, I asked about wrinkly skin as I was wondering if you'd come back and say that about your hands, the guy went on a lot about how his hands had changed and went all wrinkly.. it was one of the symptoms the thing going around china caused.

Does anyone know where the thread from that chinese guy is at this forum (it was about 2 years ago?).. it has china in its title i think and also had a link in that thread to a newspaper article about this mystery thing in china. Which sounds very much like this threads posters description (maybe a different kind of ME?).

 

Thank you very much Taniaaust. About the black spots, I think mine are more like the bruises that never go away and yes they got darker under the sun.. By the way i also developped a strong sun intolerance... is that part of ME? I do not have lupus...
I went to a cardilogist this morning as I can hardly stand up without fainting, apparently my ECG is normal and my BP too... this doc was stupid, he said i had depression and was in denial... yeah I can't even stand on my feet or brush my teeth.. Am I supposed to be happy?...

 

Has your POTS been diagnosed properly by anyone yet? tilt table tested? poor mans test?

Cardiologists rarely know about POTS as the heart is actually healthy but its the bodies regulatory system etc which isnt.

 

I did not get these tests, who does them? neurologists? I am sure I have severe POTS...

 

no not necessarily a neurologist

You need to try to see a specialist who specialists in "autonomic disorders" (that specialist could be in various fields, you just need to make sure he/she specialises too in autonomic issues)..... or possibly an ambulatory dept may know someone who specialises in that. (I saw a professor of pathology in ambulatory clinic of a major hospital not too long ago for the POTS, she was specialising in autonomic disorders).
I suggest to try to find out if your major state hospital does tilt table testing.

There are also the occassional doctor around who may also specialise in POTS eg some ME/CFS specialists do (All the best ones can also diagnose POTS as they are aware that that disorder is commonly in ME/CFS patients). Sometimes its easier to just research yourself of others with POTS who live in your state and then find out where they went for a diagnoses and for tilt table testing. (your local CFS society may be able to suggest a specialist for POTS)

Can you put a photo on here of your black spots you have?. I do have more ideas of things they could be but would like to see what exactly they look like before I make more comments on them.

 

karlish

Going back to the time you were on antibiotics, I don`t undertstand why you thought that becoming worse was a problem as this is normal due to the Herxheimer reaction. It is not clear how experienced your LLMD was. For example, was he aware of co-infections which affect the progression of the illness as Lyme is relapsing whereas co-infections are not so much. I wondered too whether you were on a Lyme forum.

Two of the marks that distinguish Lyme from ME/CFS in their severity are weakness and pain. It is pain which leads to most suicides in this condition.

Black spots can be a symptom of adult onset diabetes.

I had ME/CFS before I contracted Lyme and the difference was significant on how ill I felt.