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

I vibrate. Once I sleep for the night it stops but begins again by mid-morning.

Shaking and trembling with ME/CFS

 

I got shaky - sometimes visibly and sometimes internally - when my cortisol was high. Taking adaptogens that reduced my cortisol helped a lot.

 

Yep, that's familiar. Once they start all you can do is rest. Doing simple things like drink a cup of tea or use cutlery becomes very difficult, if not impossible.

It was worse for me earlier in the illness, I had no real concept of what "resting" was really.

One thing I discovered was that a while before this starts I lose fine motor control/adjustment. I first noticed that during a very gentle yoga session. Then I saw it was happening elsewhere.

 

New thing for me: intention tremor, albeit probably a little intense to be that, but otherwise the same -- you stick your arm straight out to reach for something, it shakes. Seems to come with peripheral NS issues, so B vitamins have been helping, some.

Early in the disease, I recall the sensation that you are vibrating quasi-internally? Really hard to describe. In that case, I'd say it's similar to the first comment: overexhaustion/ in need of rest, food, calming supplements.

 

I noticed this sort of mildly twitchy hand tremor starting when I was 19, about three years before onset. It's more noticeable if your arm has no support and your hand is just suspended in air. You can't keep the individual fingers still no matter how hard you concentrate. It has faded as I've grown older. It's hard to say if it is connected to ME/CFS, but it would be interesting if it was seen in a lot of patients.

On the other hand, this "internal vibration" sensation, is something I do directly connect to ME/CFS. It is hard to describe. To me it feels like a sort of diffuse buzzing or "fizzing," mainly inside the torso and arms. It would not seem all that odd to experience this with some kind of flu, but it was a constant feature of the early years of ME/CFS. Doctors pretty much discounted it when I mentioned it to them, but I wouldn't be surprised if it had something to do with cytokines or perhaps something metabolic. It feels like something "energetic" is happening, but it could be some sort of illusion of brain chemistry.

It's fascinating to find other people describing the same things that my doctors were just not interested in. They often didn't understand that I wasn't telling them these things because they were "complaints." I was trying to provide them with any information that might be a "clue" in hope that a light bulb would go on and they'd say, "Ah! Now I know what this is." Never happened.

 

Same. We have so many completely unusual symptoms, I started off in my diagnostic quest trying to list them all. Now I feel like I've learned that most doctors reject complexity. If it seems too complicated, they experience the BSOD and you must not be reporting faithfully.

Re: the tremor --

What I noticed was that if I concentrated really hard I could stop the tremor. But it took monumental effort. If someone saw my gesture and the look of intent concentration on my face, it probably looked like I was trying to summon the object with my mind!

 

YES!

YES! But mine is strongest in the feet and legs into my hips getting less into my torso and arms. And it is INSIDE!

 

It really GETS me how many of these symptoms are shared by many, many patients and not only would this sound nonsensical in clinic, but no one has the first idea of what causes them. A few of my favorites:

1) 'Internal vibration'. No, doc, you can't see it; sorry.
2) Sudden bruising, swelling, and pain around ribcage (w/drop in immune fxn). Sorry doc, it's gone in 24 hrs.
3) Blurred vision clearing with B vitamins. No, doc, I can't prove that I can't see. Obviously.
4) Unable to initiate movement but twitch in surprise is a-okay. (At least this is in Parkinson's, too.)

 

4) Unable to initiate movement

Does anyone else have this problem ? or any solutions ?

 

Well. I mean, isn't this the hallmark of ME, besides PEM? Difficulty initiating movement? Maybe we haven't framed it that way in the past... but I've always found it easier to keep moving gently than to push hard and rest afterwards.

I still have my protocols on the Other Forum here.

 

Yes mine range from internal tremor where I can feel on inside but can’t see to severe external shaking episodes. I only get these in upper legs core and chest. Mine has changed over time where when I first got sick I would get visible shaking when I first tried to move legs when waking which lasts about 10 secs. Now when I wake I get the internal vibration for up to 30 min and then tends to settle. The external shaking tends to be triggered when I have done too much and I’ve found my body temperature drops too 35 degrees Celsius during this and have to get under warm blankets to help it ease...

 

Hi @Melanie

I've had both fasciculations and the internal tremor for literally decades. They are core symptoms for me.
For the tremor when it's bad I take a muscle relaxant or two and lay down. It's helped me. I can't do this as often as would be useful as I'm concerned about overuse of the relaxant (I use Robax) Of course don't know if it's the same thing going on or if it will help you.

 

It was for me. It still happens during flares but it is less intense.

The internal tremors have disappeared.

 

I use Tizanidine to sleep but I don't think it is helping on it's own as I can be awake for some hours after taking it without change but once the medication eases me into sleep the vibrating is gone the next morning.

 

I don't have internal tremors but when I overdo things, my body shakes as if it was cold (it is not). At the same time, I usually feel sick in my stomach and have to empty myself quickly (diarrhoea) (sorry for TMI). My fever goes up to 37.3-37.5 degrees Celsius. It is almost like my body runs out of energy for non-necessary bodily functions like digestion. The involuntary shaking (movement) when exhausted is a great burden on my body. It usually goes on for a few hours and the following days are very bad.

ETA: eating when like this out of the question, all I can tolerate in these states is sipping luke warm water.

 

@LightHurtsME I am the same regarding the external shaking... They can contribute to severe crashes for me I assume because body doesn’t have energy that they use... I find clonazapem can reduce the internal shaking when I have them.

 

That's my theory too.

 

I've never personally heard of that as a 'hallmark' symptom. From what you're describing, it doesn't sound like the same thing that as you suggested above, also happens with Parkinson's. IMO, that's more of a 'freezing' thing, where the patient seems 'stuck', and has difficulty initiating movement. My mom had Parkinson's and that was indeed a hallmark symptom.

I do agree however that it's easier to keep moving gently rather than pushing hard, or even standing still in one place (my feet get really sore quickly if I stand in one place), and I equate that with a form of PEM, but that seems to be different from 'initiating movement'.

???

Edit to add: I had intention tremor for about 4-5 days about a month ago, but it resolved with extra B12. At least that's the only thing I did differently...

 

@JaimeS - is the blurred vision happening with any B vitamins or specific ones.
My aunt went blind for 20 mins when she tried B vitamins and has not supplemented with them since

 

Interesting thread!
I don’t get the shakes very often but I do get the ‘fizzing’ feeling - for me it will be in specific muscles when I’ve overdone their use. The fizzy feeling lasts from several hours to a day or two depending on how much I’ve pushed them... it’s usually accompanied by getting cramps on the slightest stretch or use.