Any sufferers in the UK

Discussion in 'Fibromyalgia Main Forum' started by Scarey, Jan 25, 2003.

  1. Scarey

    Scarey New Member

    I am suspected of having fms but am waiting diagnoise. I live in the UK and can not find any help here. Is there any one on this board who lives in the UK who could help me with advice etc ???????? I am getting desperate because i feel like no one believes me how bad the pain is.
  2. lou2

    lou2 New Member


    Hi scarey.......
    yeah i am from the Uk, from worcester, though i usually am in London. I am 22, got diagnosed last may with FM/CFS.There are quite a few poeple on here form the uk, probably slow as its the weekend.

    I know its difficult to find people to believe in this sometimes but believe me there are doctors who will. It may be a case of seeing a few people about it. I started with seeing a rhumatologist in london who diagnosd it. Now i am bieng treated at 'the London Fibromyalgia and chronic fatique clinic' which is on Devonshire street. They are veRy good, do all the blood test you need, and you see a nutritionist who changes the diet etc. I am now having magnesium and B-12, folic acid injections each weak becasue i have a deficiency.
    I have private medical insurance which is lucky as it can be an expensive process. I think the best advice is to get yourself armed with all the information on FMS and take it with you to the doctor and ask to be reffered to a rhumatologist. HE/She will then do x.rays and stuff to check out all the possibilities. Don't be alarmed if docs try and give you anti depressants as this is often what they think FMS is , just keep trying and youll find a good doctor..
    good luck.
    i check here quite often so feel free to ask anything.
    love lou x
  3. PatPalmer

    PatPalmer New Member

    and would love to help all I can, i`m a mine of information right now, you`re not alone.

    Have you looked in the library, I have entered a Topic to the board today. Let me know.........

    Love Pat x
  4. alsu

    alsu New Member

    Hi Scarey.I've had F.M.S for over 15years.Only diagnoise about 6years ago.Went through lots of specilists,tests ect.
    I was finaly sent to the pain clinic at Good Hope N.H.S hospital,there is a Doc there who is a specilist in F.M.S.He
    Dianoised me in about 10mins.I do not know where about you are from but pain clinics seem the way to go.
    If you would like to E-mail me for any therthere help you may, the best for now.Alan.
  5. s43

    s43 New Member

    Hi scarey,i know how you feel there doesnt seem to be any thing in the uk.They seem to accept it more in the usa and seem to have a lot more information than we do here.I WAS ONLY DIAGNOSED LAST SEPT AFTER 6YRS of suffereing,but since i have been diagnosed nobody has offered any help with medication and controlling the pain, i have had to learn for myself of the internet and places like this.I think the people here know more than there Doctors and if there is anything you want to know ask here and you will have help and all the infor that you need.They ae a clever bunch here,i have learnt a lot in the last 3months that i have been here.Take care from SHARON
  6. KAZZE

    KAZZE New Member

    I've been ill for a while, but only recently diagnosed.I'm a single parent with 3 darlings and a house full of animals!It is graet to know that there are others here from the U.K.!

  7. sare12

    sare12 New Member

    Hi Scarey,
    I was diagnosed about a year ago with CFS and I live in the East Midlands.I really understand how you must be feeling.It is really hard when people dont understand your condition.I have found it really quite difficult.I look to the outside world fine but I certainly dont feel it!If you need an ear to bend,drop me a line.
    Love Sare12
  8. genevieve

    genevieve New Member

    Hi Scarey,

    My husband and I live in Scotland, we've both had ME for many yearsnow I think there are quite a few of us here onthis site from the UK. It is not easy to find a good doctor who believes you but see if you can find one through a local ME group? Also Dr Myhill has a very informative website ( just type her name to a search engine) alsothere is a very good doc in York, Dr Downing and I think he practises in London too but both of these would be private which is a problem moneywise.

    Very best of luck in your search to get well,

    With love,