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

adambeyoncelowe said:
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.
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I'm going to carefully frame this as an "I expect that..." rather than an "I know that..."

But I expect that those white matter hyperintensities show up in any disease/disorder where there's minor neurological damage, hypoxic or otherwise. Encountered too many "and white matter (T2) hyperintensities" description for neurological disease to think otherwise...
 
Remembered this thread from a few weeks ago. After talking too much with the friend I’m staying with I went to go to sleep. When I lay down I started becoming tired but wired fizzing and having to change position every 30 minutes due to discomfort and burning. I haven’t slept more than a few minute and now I’m freaked out because the fizzing had changed to internal shaking. I’ve just had a cup of decaf tea and it’s calmed a bit. Having read some of the posts on this one I recognised it as feeling like the descriptions of internal shaking. I am away from home and don’t have everything here but would appreciate suggestions on what if anything helps. Obviously some sleep is top priority and hopefully I will get some later. I have melatonin which I can take a bigger dose of and piriton anti histamine that’s sedative. :nailbiting:
 
I don’t think the soup we had with a lot of celery in it helped I was getting up for the loo every couple of hours. Anyway I’ve got my magnesium supplements and a dose of antihistamine knocked me out last night. So no more shaking today. Thanks for all the comments
 
I had internal tremors for many years. Also muscle twitches, left eyelid noticeably drooping for many years, and it twitched, (this has started again after major surgery). Also have hot spots on skin that move around, as well as feeling hot all over, but sensitive to the cold. Early on had constant moderate dizziness, along with sessions of vertigo. Now get the vertigo. Also, since start of ME, feel like I'm walking on a ship that is navigating choppy water - I often list to the left, and can't totally control where I'm heading.

So frustrating that recounting these very troublesome symptoms just gets a "tut, tut, ain't it awful" reaction from health care providers.

If a doctor has a few ME patients, wouldn't they wonder why all of his/her patients who are supposedly "hysterical" have so many symptoms in common? Apparently doctors don't wonder. Not a very curious lot in most cases, are they?
 
DokaGirl said:
Also muscle twitches, left eyelid noticeably drooping for many years, and it twitched, (this has started again after major surgery).
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Do some research into magnesium supplements, if you aren't already taking them. They help lots of people with twitching, spasm, cramp etc. Other possible causes are low iron and/or low potassium, but research them first - neither of them are things to supplement willy-nilly without good evidence of need.
 
Thank you Arnie Pye for your suggestions! Minerals do help!

Another symptom, but one I don't know where to put, as it doesn't seem to fit anywhere, except autonomic dysfunction or endocrine problems is adrenalin surges. I have never seen this noted anywhere until Dr. Lenny Jason's survey earlier this year asked about it. When I was first sick I had these surges every time I woke up in the morning.
 
I have awful internal tremors, to the point where it feels like I'm experiencing an earthquake. One evening my daughter was sitting on the bed talking to me and I told her off for making the bed move up and down. I assumed she was swinging her legs which were out of sight, but she was sitting still. It's hard to believe there's no visible sign of what I'm experiencing but I've checked in with family members and they all say not. The internal vibrations became much worse following a hysterectomy (for endometriosis) and are always present at a low intensity, reaching the earthquake level when I've overdone things.

I also have a droopy face on the right hand side, below the eyebrow bulges out and down, and my smile becomes lopsided. This used to happen without any associated pain but recently it's been accompanied by headaches.

It's good to know I'm not going insane and other people are reporting similar things!
 
Hi @Alison, I tend to be a bit wary of assuming symptoms that are hard to describe are the same as someone else's. I wouldn't want any of us to assume unusual symptoms are just part of our ME on the sole grounds that someone else has described something similar. Always worth checking out with a doctor, I think.
 
Alison77 said:
I have awful internal tremors, to the point where it feels like I'm experiencing an earthquake.
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This is a common symptom in people who have cortisol problems, such as having too low or too high a level. However, it isn't possible to guess whether there is a problem with cortisol on the basis of symptoms, and testing would be essential. If you wanted to get a blood test done for cortisol it needs to be done between 8am and 9am (timing is important), or another option is saliva testing which the NHS won't do and it can only be done privately. If you decided it was worth getting a blood test done you would need to fast for about 12 hours before the blood draw, apart from water. And keep stress levels as low as possible during that 12 hours - avoid arguments and talk as little as possible.

Thyroid forums often discuss cortisol testing, if you want to investigate or ask questions. I get lots of info from the Thyroid UK forum which you would have to join : https://healthunlocked.com/thyroiduk
 
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