Isle of Man Fibromyalgia diagnosis

Does anyone live on the Isle of Man with Fibro, It would be good to chat to others with the condition locally. I did try to contact a support group that was suppose to be over here, Ive had no reply. however it contact was only on face book which i don't really do.

I have been diagnosed with Fibromyalgia and sometimes feel very lonely and isolated with the condition.

Thank you all so very much.

Olly

8 Replies

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  • Hi Olly, sorry I don't live in the Isle of Man but with this group you are never alone...and you can chat 24/7 there is always someone awake. In my younger days I spent every holiday in the Isle of Man for TT weeks....Yes, I was a biker girl!! Wish I was still!! Hey Ho!

    Best wishes and hope you find a group soon, but don't forget we are here.

    Trikki

  • Hi Trikki,

    Thank you for your reply. Its MGP on at the moment although like bikes and stuff since Fibro struggle to get from A to B ha ha!

    How are you ? Do you miss Bikes and things? My husband used to Marshall in the 80s.

    Olly

  • Oh yes I do miss motorcycling. I had a 650cc BSA and believe it or not I was Miss BSA in 1969!! Shows how old I am. I can be in the car on a stretch of road and so wish I was on a bike with that wonderful feeling of power and swaying with the bends. The last time I was on a bike was with my Son in Law in Northumberland and he took me as pillion of course over the fells and far away!! (Getting all poetic!) Anyway we arrived home and I couldn't get off!! Family thought it was hilarious so did I...that was the last time . My m/cycling days came to an end when I had my daughters so I wasn't in the I of M then.....Hairy job being a marshall!!!

    Best wishes Trikki x

  • High Olly welcome to the site there is usually someone around to chat to day and quite often at night as alot of us are insomniacs I was only about 3.30 last night!

    If you go on our mother site Fibromyalgia Action UK and look under Support there is a section on support groups. I wonder whether the Regional Co-ordinator for the NW could help you? Good luck.x

  • hi rosewine, thank you for reply,

    I have this site to be most welcoming and the people so genuine and helpful.

    Information for NW sounds hopeful, will try!

    Its funny because I wake up usually around the same times in the night, is this normal for fibro? It then takes me several hours to get back to sleep.

    Started Fibro meds 6 weeks ago although slightly dulling pain not sorting out all the conditions i appear to be developing.

    Anyway on a positive note have been doing a lot of research on different foods that may help my condition and help me get through the day, will share thoughts and positives if they help me although we are all different.

    Sorry to go on, thanks again for your kindness and support.

    Olly x

  • Do hope you can find a support group locally but we are always there for you. Unfortunately quite a few of the meds just take the top edge off the pain unless you take them in mega doses and if you are anything like me you would then turn into a zombie so I try to get a balance between standing the pain and having some sort of a life. Many of us have probems with insomnia or the oppositive oversleeping it is as though normal sleep patterns are shot. Even people who sleep say 9 hours get up feeling exhausted as they don't seem to go into the deep phase of sleep. Of course pain can keep on waking you up so again your are getting disjointed light sleep.

    Yes food can be a good place to start as it is easy when we are in pain and less active and everything is a struggle to stop eating healthily and of course we are what we eat. I have found it very interesting talking to my acuouncturist who is also trained in Chinese medicene. He has the theory that if you are say Caucasian you should only eat fruit that readily grows in this country so things like oranges and lemons and bananas are a no whereas native apples and cherries and pears are a yes. He also says an excess of dairy can be bad for many people with arthritic conditions (I have osteo arthritis as well). Look forward on our take when you ahve tried your new diet for a bit as we can all learn from one another. Take care.x

  • Hi pollylill

    Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, FMA UK which hosts loads of useful Fibro information:

    fmauk.org/

    I am so gneuinely sorry but I do not live on the Isle of Man but I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you

    Ken

  • Thank you Ken your support is greatly appreciated, this site is so helpful and full of genuine people.

    I was surprised to hear on our local radio Manx Radio that i listen to on a daily basis they had a group of people from the different medical professions that where basically saying to beware of forums as they only tend to promote doom and gloom, I was unhappy with this statement and felt that it was very incorrect. They failed to show the positive side of Forums which provide help and support and extremely informative on new treatments etc.

    I did e-mail the said Radio station pointing out the opposite and was surprised not to be even granted a reply!!!

    Does anyone else have a view on this?

    Anyway sorry to go on will get off my soapbox now, its raining here in the iom.

    Thanks again Ken Olly

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