new from the uk

Discussion in 'Fibromyalgia Main Forum' started by sara261, Aug 22, 2005.

  1. sara261

    sara261 New Member

    I have been ill for 5 years now and they have just figured out that i have CFS!!! due to menegitus (which i dont think i can spell lol.)
    The problem is there is not support group around me i'm 26yrs and just moved to the area so no friends etc..
    The doctor today just fobbed me off with some prozac pills and said this is just to help with the pain and there are no side effects!! (which is not true)
    not sure what to do now????
    any ideas??
    Was thinking to go back to the doctors and see if he will change his mind and suggest cbt even though i dont know what it is just so i can make him see sense to refer me!!

    [This Message was Edited on 08/22/2005]
  2. badluck

    badluck New Member

    about your health, but welcome to the board! I have FMS, not CFS, so I can't really help, but I wanted to say Welcome and keep this bumped to the top so others can help you. Good luck!!
  3. Shirl

    Shirl New Member

    Glad to have you join us, but sorry to know that you are ill.

    We have many members from the UK, I know they will be here soon to welcome you. Hopefully they can help give you some good advice as well.

    I have FM, not CFS but many of us have one or both.

    Again, welcome to the board.

    Shalom, Shirl
  4. tansy

    tansy New Member

    Yes most of us get fobbed off with antidepressants, even though many with ME/CFS have problems with them. Of course the other options on the NHS are CBT and graded exercise.

    When I first joined this and similar message boards I was overwhelmed with all the info and different opinions as to what would help; but hang in there because many of us are now improving in spite of the NHS.

    You will get lots of support at Immune Support. There are quite a few UKers who post here so I hope they will reply here too.

    Take care.

    love, Tansy
    [This Message was Edited on 08/22/2005]
  5. sara261

    sara261 New Member

  6. AFair

    AFair New Member

    Nice to meet you. I joined this board about 9 months ago now as my boy friend had CFS (still scared to use past tense as dont wish to tempt fate). He was terribly ill and in a lot of pain. The good news is he is now almost back to full health, he works full time, goes out with friends til 2/3 in the morning, cycles, plays badminton, water skis etc etc.

    I put his sucess down to Mickel Therapy. If you want to find out more search under my user name to see my story so far.

    Where abouts in the uk are you Sara. I live in the North West.

    There is hope Sara people do get better from this my bf is proof of this. He was one of the worst cases the doctor had seen

    Take care xxxxxxxxxxx
  7. Fibrolady37

    Fibrolady37 New Member

    Sarah,Just wanted to give you a big welcome to the best site.
    Ive beeen coming on here for 9 years now & my fibrofamil has grown soo much.
    Hope you find answers to your questions.
    Take care & may god bless you
  8. deliarose

    deliarose New Member

    Hi Sara
    I am a UKer, currently living in the US, and I have had CFS for 10 yrs. I would recommend you check out a supplement called VegEPA which I have found to be very useful.

    I've tried all kinds of prescription meds and supplements down the years, but this one really stands out.

    It's basically a fish oil wrapped with a very pure version of primrose evening oil, and there has been some scientific studies to show it enhances the functioning of the mitochondria in the cells... otherwise known as the cell powerhouses.

    Professor Basant Puri of the Hammersmith Hsptl in London has done some of those studies and he recommends this vitamin for patients with CFS/ME.

    u can find out more @

    I don't know that u need to bother with the book.. I'm sure u can pull the study off this or other sites.. and the vitamins are expensive enof.. given that u need to take 8 a day... so I would just buy the vitamins.

    Otherwise, I find I need to take a sleeping med. I'm on a low dose of Klonopin/Clonazepam .. and I take Zoloft, an anti-depressant ... for cognitive function... although I would say the results are mixed.

    But, the most impt thing I can tell you.. if you're still in the early stages of the illness, is just listen to your body.

    It seems to me the best chances for a full recovery are if you are young and you get an early diagnosis and rest up. And I mean rest up.
  9. Smiffy

    Smiffy Member

    Welcome Sara, I'm from Wiltshire & have severe long term CFS & FMS. I take low dose amitriptyline (another antidepressant) at night for pain & sleeplessness, & am trying the Guai protocol.

    The advice on resting as much as possible is brilliant. You also need to pace yourself; resting after each small activity. You can ask your GP to refer you to a specialist.

    CBT is very controversial & has made lots of us worse (including me). It seems to be based on the premise that ME/CFS is a psychological disorder.

    If you're still feeling lonely (& CFS/ME is so isolating)have you found the lighthearted 'Brainfog' CFS/ME UK message board?

    best wishes

  10. Bronagh

    Bronagh New Member

    Hi Sara,

    Just wanted to welcome you here, i have Fibromyalgia so i don't think i can help. I'm new here also i joined a few days ago, everyone is great here with help and support.

    Best wishes.

    Bronagh :)