Fibro specialists?: I've wanted to join... - Fibromyalgia Acti...

Fibromyalgia Action UK
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Fibro specialists?

westcountry
westcountry

I've wanted to join a Fibromyalgia help group for ages as often I feel so isolated and helpless with this condition. I try to keep positive and manage this most days but on some days get quite miserable with it all! I have been diagnosed with this for a few years but it took ages, as I had to have tests for MS and Parkinson's (as some of the symptoms must be similar). I am under a rheumatologist and now a pain clinic, but to be honest none of them seem to be fibromyalgia specialists with the latest research. They just tell me to go away and 'manage' the symptoms by pacing myself, which I try to do. I do gentle exercise, stretching, pilates (can't do all of it) and gentle gym work so I do try and help myself. I used to love walking but my calf muscles go into the most awful spasms and stop me walking for days sometimes when I try to walk a bit further. I also have dreadful problems sleeping with regard to pain and raging RLS.

What I want to ask is that does anyone know about an actual fibromyalgia specialist and does such a person exist, or would this just be a rheumatologist? This condition seems to be more widely known about now, so surely there must be specialists out there?

Also, with CBD oil being in the news I'm wondering if this will be prescribed for Fibromyalgia in the autumn when,apparently, they may legalise it? I take the one from Holland and Barrett but it is very low dose.

6 Replies
oldestnewest

Welcome my Fibro buddy just remember you’re not alone and you’ve come to the right place. Sending gentle hugs 🤗

M0AL61
M0AL61Administrator

Hi, and a warm welcome to the forum.

There may be some fibromyalgia specialists around the London area, I'm not sure, but they are very few and far between. Sometimes you can be lucky and find a really good rheumatologist who does understand about fibro and will go out of their way to help, but again they are few and far between.

Others here may be able to give you some names of specialists in England. I'm in N. Ireland, and we have no specialists here that I am aware of. xx

Hidden
Hidden
in reply to M0AL61

Hi

Welcome to the forum, everyone is fantastic on here. My rheumatologist kicked me into touch when I was diagnosed with fibromyalgia!! My own Dr is more helpful than she was!! I don't reckon much to pain management, hopefully other people have had better luck. Love and hugs Lynne xxxx

CBD oil is already legal and you can order stronger strengths online but important to do research first as I would suspect there are some manufacturers better than others. It is medical cannabis that is to be legalised later this year and whether it will be prescribed for fibromyalgia remains to be seen. If the NHS follows the lead of say, California, where it is on the MMJ recs, then it could be. I live in Devon and have found the support I’ve received from my specialists to be excellent. However, ours is an awful condition with its truly horrid days and sometimes not so bad days and for me it’s a constant reminder that this is my ‘new’ normal now and I have to adjust accordingly. I use magnesium spray on my legs at night for the spasms which helps and gentle yoga stretches. Best of luck to you😊

westcountry
westcountry
in reply to Alb2

Thank you everyone for your replies. It's so nice to hear from people with the same issues and to get opinions and advice. I also use magnesium spray for my RLS at night and also when my legs go into spasm ....it seems to help. Also something I read about to help with RLS at night is to put flat bars of perfumed soap in the bed near your legs! It all seems rather weird but I tried it and it seemed to help a bit. Re CBD oil for fibro maybe everyone should write en mass to the Health Secretary to ask for this...I will do that myself.

We all hope the CDB will be prescribed for fibro have you ever been offered hydrotherapy? I swear by it and believe me if it didnt work I wouldnt go.You might have to travel a bit to get into a group but ask your physio and your gp.

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