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Shakiness with CREST systemic sclerosis?

Hi there ~

Does anyone ever experience a "shakiness" with their systemic sclerosis? Not an outward tremor that people can see, it is almost an internal tremor or shakiness that I feel.

The best way to describe it is that it feels like when you work out really hard and then you feel shaky for a while afterwords, only this feeling will last a week or so with me.

I know that with Scleroderma patients we have a decrease/defecit of ATP in our muscles, so our recovery time is much longer than those without Sclero.

My thought is perhaps on the weeks that I unknowingly over do it and use up my ATP my muscles are essentially shot and the shakiness I feel is actually just a tremendous muscle weakness and it is taking a weak to get my reserve back.

That is just my non-medical theory, but my problem is - How do you know how much is too much if you have always done it?

I am newly diagnosed as ACA positive (centromere antibodies = Limited Scleroderma) with positive ANA in October. I am still getting used to figuring out what IS the Sclero and what is just a bad day, but this seems to happen at least once a month.

And the fatigue is ridiculous.

Any suggestions would be appreciated.... I dont understand this take it easy, dont over do it, stuff when you HAVE to live your life?

Thank you al!!

Looking forward to hearing some feedback :  )



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