I live in jersey channel islands. Ev... - Fibromyalgia Acti...

Fibromyalgia Action UK

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I live in jersey channel islands. Even though I was diagnosed with fibromyalgia 14 years ago there have been no places

ally1971 profile image
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Over here for help or support. Also when I go to the drs there is little knowledge of it only my specialist at the hospital seems to recognise it. Having three children I struggle and am often in lots of pain and vey tired. I feel at present unable to work but I feel that when I speak to a dr in order to try and get help financially via invalidity support I feel that they don't see it as a disability at all so I Am getting no help whatsoever. Does anyone have this problem or any advice please?

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ally1971 profile image
ally1971
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skit profile image
skit

Have you checked out FMAUK .org? They have had support group in Channel Isles might just be a time to get together?

Sarah-Jane profile image
Sarah-Jane

I think Skit has your main answer, but if I might just add I sympathise with your plight, I have heard that many have had this sort of problem.

I am in contact with people in America, Canada and Australia who experience this. I suggest you get a copy of Fibromyalgia for Idiots. It's been a great help to me and better than a lot of other material I found. Some of the medicines mentioned have another name here, but there is also advice on explaining FM to someone as well as advice such as take someone with you to every medical meeting. The doctors suddenly sit up and listen when someone backs you up or fills in gaps, plus they can help you recall what was said or decided. I don't know about you but under stress I become foggy and forget!

Why not put a letter in your local paper asking whether people would like to make contact with each other, maybe as an email?

I hope your doctor brushes up on his knowledge. Maybe you could help? I wrote out a very detailed list of symptoms before my diagnosis and my doctor was very grateful - even though I worried that it might seem over the top!

Soft hugs

Fibrofoggiest profile image
Fibrofoggiest in reply toSarah-Jane

Coooo Sarah-Jane.......Fibro for Idiots book......must be made for me !! Will have to search one out :-)

Deefer profile image
Deefer

I think the support group is on Guernsey, but if you look online at FMA UK as Skit suggests you can contact the Regional Co ordinator who covers the Channel Islands they could put you in touch with that group leader so that you have some contact with people who probably have the same problems that you have living on the Islands.

ally1971 profile image
ally1971

Thanx everyone, will try about the FMAUK group see where I stand in jersey. Also yes Sarah-Jane I have a memory like a sieve at the best of times but under stress it's much worse. I am even getting to stages where I can't remember names of objects...or forgetting things the kids needed for school or after school activities. I have also missed lots of appointments as I forget. My mum used to ring me to remind me but she passed away in April. Feeling very flat at the moment not sure if it is the fybro causing it

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