I am very new to fibromyalgia, the di... - Fibromyalgia Acti...

Fibromyalgia Action UK

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I am very new to fibromyalgia, the diagnosis, not the symptoms. So waiting on next stage, any tips for exercise or pain management ?

Life_of_riley_n_cash profile image

I only got the diagnosis today but I have been struggling with it all for, at least 2 years. I had JVA Stills disease, which has caused thinning and phishing of my right knee cartilage but I am waiting for blood results to see if stills disease is back. Even though I have 1 diagnosis, a thorough plan cant be formed until my results, which is okay with me. However, I am struggling physically right now and I was wondering if anyone has any tips and advice to tie me over because this is very new and I am very lost...

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Life_of_riley_n_cash
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5 Replies
CM1EDSUK profile image
CM1EDSUK

There are some resources about coping with pain on the Physiotherapy Pain Association's website which you might find useful. Please see: ppa.csp.org.uk/content/link...

It can all be a bit of 'trial & error' to find out what might work for you. I don't have fibro, but live with daily pain. As with fibro, however, I find that pacing helps. Keep taking breaks between activities, & even if you're having a slightly better day, don't be tempted to overdo things. Personally I also use gentle exercise, but I wouldn't like to recommend any when you're still awaiting your blood tests....only you know how you feel, & your limitations! I also use distraction techniques (anything you enjoy, e.g. a hobby, drawing, reading, listening to music, watching a film), & mindfulness. Hope this may give you some ideas.

Midori profile image
Midori

Try to keep moving, don't sit or lay down all day, or you will find you have almost nil ability to move at all. I've been in a Wheelchair, absolutely hate it, so I have Forced myself to move and get out of it. I too have a knee that lets me down, but I use sticks or a Rollator to get around on. Hopefully your GP will refer you to Physio, they will be able to target the muscle groups you need to keep strong.

Cheers, Midori

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

Hi and a warm welcome to our community. Here you will find information support friendship and laughter too. You can find general information on fibromyalgia at our main website fmauk.org

JayCeon profile image
JayCeon

I always suggest getting good physiotherapy (incl. osteopathy, acupressure, acupuncture, yoga etc. exercises (qi gong, tai chi), cryotherapy) - everything you can get your hands on, and if it hurts, do it shorter, gentler (10'' if 30 is too much)...

and getting to know your body in a new way with the help of the people here, looking out for your invisibly moving sweet spots for every single thing you do....

Stills profile image
Stills

Hello, are you still using this site? I have AOSD and now I suspect fibromyalgia and I’m looking for experiences that may help me?

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