'Shaking and trembling with ME/CFS' - Chronically Hopeful

Does anyone who gets the internal vibration or external shaking also have muscle weakness as major symptom?

 

Yes. But I have had muscle weakness for many years and the vibrating is within the last 6 months or so.

 

I definitely note having trouble starting to move, but once I get going it's exponentially easier. I don't freeze in the middle of motions, but if I've been still awhile it's really tough to move again.

Whoa! I noticed it with B2 (and, to a lesser degree, B6). I didn't even realize I was having trouble focusing my vision well until I took it and everything sharpened. It blew me away. I think (sheer conjecture) that it could be a muscular problem still. Focusing the vision still requires muscle movement and takes energy to accomplish.

 

For sure. Sometimes my legs just give out and I sit abruptly wherever I am.

 

I' m pretty sure worst culprit for my aunt was B12 ( and i' m also sure it would make a big difference if she could take it - the double bind again )
If she had had gut issues she might have tried via patches / injections , but won't budge.

 

Has anyone had muscle biopsy for muscle symptoms? If so what were findings...

 

This was a major symptom for years early in my illness, it still occurs sporadically and I realize now that it is viral related because I also become out of breath easily.

There are times when my gait is jerky and feel I might fall forward. This was especially bad when I was magnesium deficient.

 

maybe I'll give that a try...

My 'sudden sitting' is turning into actually falling down. Left side weaker than right... frustrating, embarrassing... and left foot drags a little the tireder I get. It's not noticeable to anyone but me, I'm sure, but I appear to be limping just a hair.

Still in part volitional, in that if I focus very, very hard I can continue to move; but loss of function (or increase in difficulty maintaining function?) is sometimes sudden enough that I just tip over.

So I might get a cane to support left side...

 

Have you had this checked thoroughly? I understand this could be a sign of a recognised neurological disease (more than one, I think), not necessarily ME.

 

Yes, I have all of those. External shaking is minimal most of the time, internal shaking comes and goes at various intensities and muscular weakness is 24/7 at various intensities.

 

Just to add an anecdote to this. I sometimes manage to travel but my strict length I manage is 1.5 hours in a plane - during my really good periods of health (so once every 5 years or so). I prefer to fly to small airports. Once there were no flights available to a small airport so I had to fly to a large one. The plane was circling for extra 45 minutes. My body started shaking and especially my leg started jumping up and down. Passengers around me and the airline staff were really concerned - but I had to console them it was normal for me if I go over my activity limit. The staff were about to request priority landing but they were just given a landing slot anyway. The rest of the journey home involved my carer somehow getting me home, with me semi-conscious.

Really, I think if the public really appreciated what ME is like, I may not have been allowed to fly in the first place.

 

They ran me through the wringer at Mayo. According to sweat pressor test, nerve impulses are not, in fact, travelling all the way down the leg. The more intense testing, akin to electroshock, I could not tolerate -- and found out later that a significant percentage of other patients can't, either. They just don't let you in on that little tidbit beforehand.

I'm sure I do have "other things" besides ME. Who wants to go through another several thousand dollars of testing for yet another 'maybe'? Neuromuscular testing is both expensive and invasive. I'm considering seeing Kaufman, but I think I'm going to save up, first. I hate owing money and yet I've spent most of my adult life in some form of debt or another. It's been paying off Mayo to paying off KDM to paying off Stanford Medicine. At least at Mayo and with KDM, they gave me useful data and help; Stanford Medicine literally bounced me to three specialists before I stepped off the ride in disgust. Nothing more than rudimentary testing I'd gotten done before with a "but just to be sure, dear" and a few thousand more in debt.

Then they bounced me to their "chronic fatigue" clinic to see a nurse practitioner for my "chronic fatigue". This took so long that I had no idea what they were referring to. Apparently, the immunologist, who'd tested my IgE and IgA (again) had referred me in November of last year, and without my input. Just so done.

 

I've just seen this thread. That video in the blog could be me. Indeed, I've got a couple of videos on my own phone showing the same thing on my hands. My ME symptoms have been getting worse over the last few years along with pins and needles in my hands, left hand side of my face and feet. Then the weird twitches started happening, toes started moving on their own, the two smallest fingers on my hands. Late last year came odd little muscular twitches at random places all over.

A few months ago I noticed slight tremors, sometimes its visible to others but mostly it's like an internal buzzing, and these have got worse over the last few months. I freaked out a bit because I thought it was Parkinson's so I went to see my GP and he thinks it's MS, so I'm booked to see the neurologist in September. The thing is, I had various MRI scans to check for MS a couple of years ago when the pins and needles first started but nothing showed up then.

Getting moving is difficult, it's like I have to learn to walk again each time I get up, but once I'm moving I can potter about reasonably well. My left hand side does seem to drag though. After 19 years of ME I thought I had seen all that it had to throw at me but apparently not.

 

Always give high doses of B vitamins a go (if you can tolerate, of course, low-but-slow, all of that). I forgot about that internal buzzing symptom entirely (and I forgot just how bad the neuropathies feel) but when I ran out of Terry Naturally Healthy Feet & Nerves (a B blend) it came roaring right back. FWIW, those symptoms ONLY go away with that particular supplement in my case.

If it's properly oxidized.

A new bottle doesn't work.

After awhile, I always started keeping two bottles, opening the first and setting it in the sun to 'cook' until the pills start to turn yellow. If it's an emergency, I empty the pill into a bit of water and microwave it: the pill's contents turn bright yellow.

Then it works.

Can you imagine trying to explain this to a clinician? But it doesn't take a rocket scientist to figure out that older pills work better than when you first open the bottle, especially if/when the symptoms are notable and return pretty swiftly in the absence of the active compound(s).

Other culprits might be dopamine? The whole "easier to carry on motion than to initiate it" sure sounds like dopamine deficiency, or dopamine receptors punking out.

I've started taking tyrosine (dopamine precursor) and selenium (helps the reaction along). Can't do Mucuna dopa -- too strong for me.

 

I know this. In my case it's the right leg. It can get as bad as paralysis. I think this is a symptom of ME. I was told I certainly don't have MS or any other neurological issue.

 

Me, too; but then I was also told that... "it could be a kind of... pre-MS?"

This was early on in the diagnostic process. I goggled. Then I said, "What's MS like?!"

 

I know of at least one ME patient whose doctor has labelled them with atypical MS so they can access treatment easier.

As I understand it, there can be both oligoclonal band expansion and white matter hyperintensities consistent with diffuse demyelination in some ME patients.

Whether that's because they actually have early-stage MS or because that's a part of (some forms of) ME itself is of course up for debate at this stage.

 

Well, if it's MS it will certainly show sometime.

Edit: I mean this more cynical. I observed some time ago that doctors aren't best when it comes to early findings and decided: well, if it is what I think it will show some time in a clear manner. Of course, then it's too late most probably, but I can't change it. I cannot pay private doctors, and the others won't act foresighted (one even called that "prophetic") so I am forced to accept it how it is.

 

Well, it would be like a Christmas gift if I received such a diagnosis. Not that I don't like the ME community (I do) but I really come to my limits with this diagnosis.