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Any body else suffer from whole body shaking, even whilst they are asleep?

For the past few months I have been shaking whilst in bed, especially when I move, and even when I am asleep. I originally thought it was because I had to stop my MMF for six weeks and my steroids had been reduced too. I have been back on the MMF for about a month, but the shaking is getting worse, I am starting to get it through out the day too

Thanks for any answers in advance.

5 Replies

How do you describe the shaking - like someone shaking you or more of an internal tremor? Do you feel cold, hot, do you sweat at the same time? Is the whole body shaking at the same time, or legs some times, then arms other times, etc?

MMF tends to cause muscle tremors and twitching but I haven't yet come across a whole body tremor due to it. Steroid withdrawal might give you this - have you dropped sharply?

Check with a doctor soon, you need to get to the bottom of this.


Morning purple top, it's very hard to describe, I know it's going to happen before it starts.

During the day it's just a general tremor most of the time, when I've over done it, my whole body shakes, if I try really hard I can stop my leg from shaking for example but the rest of my body still shakes. It can last from about 10 seconds to 2 or 3 minutes, stops then starts again.

Of a night time, my whole body shakes, I don't notice a difference in temperature, I am certainly not cold. Whenever I move it starts the shaking off, but my partner has said I even sleep through it now.

It's been happening every day for over 2 months now.

My steroids were down to 13mg per day, my rheumy put them up to 20 for a week and then to reduce by 1mg per week.

Basck down to 13mg again now.

Thanks for listening :)


That's weird, go to a neurologist!


Iv experienced a slight shake when I'm in bed of sleeping my legs seem to shake and twitch so do my arms, but it feels more like an internal tremor then Sumone shaking me. Goes away after a wile but feels weird.


hello tiredmum I shake quite often they tell me its because of my fibrosis .the other day I got got shakes and threw cup of tea over my self . oh you have to laugh .


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