Rose1941

Hi Rose

Yes my husband has had problems with this.   His GP sent him to the consultant who deals in epileptic fits.  Thankfully, this was ruled out.  He has shoulder and neck problems with nerse damage running down his right arm and the consultant put it down to his neck problems, but maybe it was as a result of his fybromyalgis.  He doesn't sleep well at all and I think this is part of the problem.   Received PIP form recently and I'm trying to fill it in the best way I can but its hard when your not actually the person who has the condition.   I'm finding it hard putting everything into words and describing how it affects his dialy life so if any one has any suggestions or can help me with this I would very much appreciate it.  Are you claiming PIP?

Hello Rose,

I am constantly tired, actually the word tired doesn't really describe it as some days I can hardly keep my eyes open, as I'm sure you as a fibromyalgia sufferer will totally understand.  I don't shake uncontrollably, but I am very unsteady on my feet, often my legs will give way and I end up in a heap.  

I sleep very badly as the pain wakes me each time I turn over  and there's many a time I've given up and tried to sleep in the armchair. It's all a bit grim at times and I do believe that only other sufferers understand.

My message sounds like I'm feeling sorry for myself, I'm not I always make the best of everything I can and always try to remain positive that one day I will wake up and it will all be gone  (yeah right) 

I'm sure that it affects us all differently, so it will be interesting to hear from other people. x

Hi Rose

I don't visibly shake but have internal shakes which are weird.  Sleep - what's that!  I am lucky to get 2 hours without waking but find other things to do in the wee small hours.  Epsom salt baths or sea salt baths help a lot with the restless legs or muscle aches.   I know some fibro folk take medication to help with sleep but I prefer supplements, chiropractor, gentle exercise and diet to help me through. Can't say I am pain free but it's manageable and I do find I can still work with the regime I follow. Like you I try to think positively and I have posted my mantra on here several times before.

I have seen better days

but I have also  seen worse

I may not have everything I want

but I have everything I need

I may have woken up with aches and pains

but at least I woke up

My life my not be perfect

but I am blessed

We all know fibro is different for all of us but at least we can support and listen to each other. Take care

 

Yes Rose, I do experience internal trembling but not uncontrollable. I fall asleep then wake up not long after, with that trembling sensation. It is not pleasant. It doesn't happen all the time however. Your trembling could be from anxiety as well. Have you been under extra stress of late?  I notice that caffeine has that effect on me as well. Just get it checked out by your doctor if you are overly concerned. But I don't think it is serious. We all get very weird symptoms at times Rose. Take care of yourself dear. Maggie x

Hi Rose1941 I am going through exactley the same thing at the moment, Ive been under alot of stress I dont think that helps. Im hoping it will go off soon fibro likes to put us through different symptoms. If your concerned have a word with your dr take care 

No problem - these were all recommended by a professional

L-Carnitine

B12

CoQ10

Tocotrienols

Vit D - with this one important to have regular blood tests to ascertain levels.  I am on a very high dose as I seem unable to maintain a good level. Low vit D can make muscles ache even more than usual.

Epsom salt baths/dead sea salt baths.

Hi rose, i get the shakes at night, it's like having a fulyly aware siezure, it's the only way i  describe it.

?I didn't know it was part fibro.. i thought it must be something else. i also get internal judders.

Hi everyone...

I am so glad to hear that others also get this with fibro..I was getting worried. Sometimes I wake in the night and I am trembling like I am freezing cold but I am warm !. It never happens unless I have just woken up...so not that often lol ! I also get restless legs and a jolt in my leg which seems to come from my hip ???

Yes mine does it is very annoying I sometimes shake when I'm just about to go to sleep which wakes me back up and then it takes me ages to get back to sleep