fibromyalgia

[meg3]

i was told several years ago that i have fibromyalgia. at the time i was sent to a pain clinic to speak to a doctor who told me "as i was able to get on with my day to day life there was nothing they could advise me on! ". as time goes on i find i have pain more & more frequently, any sort of pain i mention to my gp is always put down to my condition but no help or advise is ever offered.she recently asked me if i was under the hospital for my fibromyalgia, when i said " no! i,ve been left to get on with it! " she could not change the subject fast enough!! does any one out there know if i should be getting more help & if so who do i speak to about it?

[PatriciaH]

Have a look on here

http://www.fibromyalgia-associationuk.org/comm unity/

[Scarlett]

This makes me so angry, as the condition has a name yet Doctors refuse to acknowledge that it exists! Is there anything else that it could possibly be? Since they don't really understand it, they refuse to acknowledge anyone who has it. Could you go private, just for a consultation with a specialist, who could then discuss with you medication/pain treatment/alternative therapy which may help? Once you have the private consulation, you are then in the system, so anything he suggests for you, you can do back on the NHS. I have found specialists, when seen privately, do everything they can in their power to help you. The same person on NHS does the bare minimum.

[Eve]

Have you tried looking for any online and local support groups where you could get advice and support?

I had some initial episodes at uni then last year was referred to a rhumatologist due to swelling and pain and was diagnosed with general inflammatory arthritis and secondary fibromyalgia and osteomalacia, am also hypermobile.

I did a lot of reading on the internet and am having some talking therapy which helps in maintaining a good balance and being more aware of my limitations and how to cope with them and manage them.

I am on chronic pain relief medication which does help and have physiotherapy and osteopathy and am building up to introducing a better activity regime.

Swimming is good as is meditation and activities like chi gong.

I have also been trying to find activities that I can manage which keep me active and relax me like photography. If you're really into something it gives you more enthusiasm to get active and work through some of the pain.

I also make sure I have enough time to rest and catch up. I plan my weekends so that I have a good day Saturday trying to get out and about and get some fresh air and exercise and be active then Sunday is my rest day.

Routine helps with that as you know you have time to fit things in without panicking you won't get the rest you need.

I also make sure I get out and be social in a way that is ok for me, mainly lunch or drinks after work with friends so I know I can get home at a decent time.

Hope this helps x