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Fibromyalgia Action UK

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I’m new here...

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Hi everyone!

I’ve just joined ‘cos the posts I’ve read have been helpful.

My name is Sonia but everyone calls me Sonie (pronounced Sonn- ee for those who might be wondering 🤪)

12 years ago I was diagnosed with Fibromyalgia after experiencing widespread pain and stiffness for some years.

I’ve had some good physios and some not so good. Along the way I have mostly worked out what benefits me such as pacing, heat therapy and gentle regular movement.

I turned 60 this year, moved home and had some family trauma and no surprise the Fibromyalgia symptoms have gone from 1-10!

Saw a consultant rheumatologist this week and being referred to a clinic specifically for Fibromyalgia and similar eg ME and CFS.

I’ll let you know how that goes.

In the meantime do any other sufferers get muscle spasms where your head involuntarily moves from left to right quickly for a time then suddenly stops and when other parts just fling out like someone has grabbed you from inside and thrown you , be it arm leg or trunk?

I also started with trigger fingers and painful stiff hands too this year .

I’d be interested to know what others have found helpful😊

3 Replies
JayCeon profile image
JayCeon

Oh dear, SMB, I hope coming to terms with the traumatic events will be possible, praps with counseling-help, and help the Fibro go back down to "1"... Praps treating the new and tougher symptoms will be possible with adapting your old and adding new treatments. Your spasms aren't fibro, I'd think they need at least neurological checking.

For fingers and hands I learnt some helpful exercises in the rheum clinic I was in a few weeks ago, e.g. holding your hand(s) like around half a ball,

then a) pressing it flat and repeating that,

or b) pointing each finger up singly as far as possible,

or c) creeping forward with your hand over the table.

d) using Qi Gong balls,

e) hold a thicker pen or something similar and turn a lying down 8 (point your trigger finger and use it as a guide for the 8 at first, if need be).

I thought I didn't need this stuff, but I've realized I definitely do. And it doesn't just train or relax the hands, it's the arms too. If they are overly stressed and aching, I need to rest them before I can do the exercises. But if I stop in time, I can do them to unstress them.

CM1EDSUK profile image
CM1EDSUK

Hi Hidden - I'm only able to advise a little about your comments re: trigger fingers.' I've had problems just with one trigger thumb (not fibro-related, but due to a very old injury).

What has helped me enormously has been a silver ring splint bought from a lady who suffers with problems herself. If you Google 'silver ring splints UK,' you will find one recommended by an Occupational Therapist (OT). You can buy these, but she also accepts NHS orders, if your GP/specialist would be willing to look into this. I've had mine 4+ years, & still going strong. I also get good comments about my 'jewellery.' I hope this may help you.

markprice profile image
markprice

Welcome Sonie. I joined for the same reason as you. It's a useful resource, and everyone seems to be very helpful. Best wishes, Mark.

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