Shakiness versus nervous?

[Stretched]

After all these years I’ve recently developed a disturbing new symptom, shakiness. It’s beyond
nervousness. It seems to rise and fall with mental state - from calmness, light shakiness to
agitation, noticeably shaky. It might be more pronounced when tired as in sleep deprived or after light stimulation, e.g. walking or reading.

We’re talking about visible sal shaker shaking, to the point of needing to use 2 hands to keep a glass of water still.

Is this kind of shakiness part of your CFS? If so, does it just come about periodically or seem to be a ‘stage’ pre- or post- PEM; or a state of mind??

 

[Wishful]

I did have shakiness (tremors) during the early stages of ME. I'm pretty sure that the severity more or less coincided with the severity of other symptoms. I can't answer regarding PEM, since the tremor period was before I knew I had ME and knew what PEM was. It eventually went away, mostly. I still very rarely get some tremors.

Your question of 'does it pass with rest' is ambiguous, since there isn't another question 'does it pass without rest', which is quite possible.

The tremors were definitely something other than nervousness.

I can't actually vote on any of those questions.

 

[Hope4]

@Stretched Have you found a way to reduce the shakiness? Mine comes when things are "too much". And the shakiness tends to stay for weeks.

 

[Stretched]

I went to a neurologist and got a work up when my feet manifest peripheral neuropathy pain as well as the tremors from no where, primarily since ME is Neuro related. He at least minimized likelihood of Parkinson’s disease and said 80% of tremor cases are medication related - too much, contra, withdrawal, overlap. Bingo for me! I had been withdrawing from a benzo - slowly, but still too fast. Also, using Ambien mucked up calculations.
I’m taking benzo, ironically (see following), but the tremors come and go, usually rising with my emotional state.

The PN involves electrode tests to see where and why and where the pain comes from. In my case it has been long term decay of nerves which die off and cause the pain. Pain can be quite significant and life altering if they can’t isolate the locates and fix it. This testing is still ongoing. It’s scary because of the uncertainties. In all, it’s slow going. I’m going to a pain clinic, hospital affiliated since opiate concern is a hot top topic. Who knows, it may all be interrelated with ME???

 

[Hope4]

@Stretched. Thanks so much for taking the time to post. . I wish you success with all the tests. I hope the pain clinic is helping you.

The shakiness I get has a lot to do with my emotional state, too, -- but I also think there are several things going on related to heat intolerance, too much sun, VOCs, ME, hives, immune system challenges, menopause, and who knows what all.... For me, the emotional state part fits in with the Systemic Exertion Intolerance view.

Am sending you all best thoughts.