Finding the Pink in Fibromyalgia.

[PinkRose22]

Hi, I am living in my first years diagnosed with Fibromyalgia after over 20years of challenge. For my family I am a pioneer. I am the only one diagnosed. I am challenged by employers and my own wellbeing. There is no consistency across my care. I am looking for support in how to pull professional support together and begin the long journey to a local centre of eexcellence.

[Hidden]

I’m afraid I can’t give any suggestions on pulling professional support together. A lot depends on where you are and so far I’ve met ineffectual GPs, a disinterested rheumatologist and never got to meet the pain clinic doctor as apparently he/she has a crystal ball and magically knew s/he didn’t need to see me !

Best advice I can offer is learn all you can about fibro, listen to your body and learn what works for you. From the simplest like Epsom salts in a hot bath to Tens machines, supplements, painkillers, alternate therapies, there’s no “one size fits all” .

[MichelleButterfly]

Hello PinkRose22 and welcome to the forum.

You may wish to lock your posts in the future to protect your and other members privacy. Here is the link how to, healthunlocked.com/fibromyalgia-action-uk/posts/130214324/faq-how-do-i-lock-my-posts-so-only-members-of-this-community-can-read-them

Please have a look around our website also has a lot of information you could print off, share or request an intormation pack for yourself to show friends, family, work colleagues or a pack to send to your gp. Here is the link fmauk.org

[Dinkie]

Hi and welcome. Took from 1987 to a couple of years ago for the medics to put a label on me. As for consistency of care, where I live once diagnosed, fibro folk are discharged back to GP and that is it. I had to fight for a referral to Guys and Thomas's fibro clinic - amazing what a letter and a meltdown on the phone will achieve! All I can recommend is that you write to your GP asking for what you think you need be it a referral to pain clinic, physio, or to specialist clinic, review of meds etc. Once GP received the letter leave it a couple of days and ask for a telephone consult that way your request is recorded properly. If it doesn't produce the desired effect write to MP and ask them for assistance.

As for employers - have you had an occupational health assessment, if not and you feel you need one request it. I hated it when my employers insisted I have one but to be honest it was the best thing that could have happened and has made my working life so much easier. I would say this is worth looking into.

With fibro, no one size fits all, we all have a different array of symptoms and opinions will differ on what works. It's very much a trial and error to see what works for you. I, and some others on the site can't tolerate prescription medication so its down to other things to help us such as supplements, heat pads, diet, gentle exercise, tens machines, and I also use chiropractor and hypnotherapy as and when I can afford it.

Good luck in finding what works for you.

[Midori]

Welcome to the club nobody wants to join! It is like the Hotel California.

We all wish there was 'joined up' care in the diagnosis and treatment of Fibro, but until doctors can agree on exactly how it works and what causes it we sufferers are out of luck.

There are so many theories about it and still no agreement as to just what it is, and what sparks it off, that Health professionals are wading around in the dark, in a murky soup of theories..

America seems to be out in front with diagnosis and treatments, but we are trailing behind.

[BoohPear]

Sorry PinkRose i agree with Midori but I do feel for you as a sufferer myself😺