Fibro private specialist in London

Hi everyone, after 2 years and 5 months of mistery illness the rheumatologist last September told me that I have Chronic widespread pain syndrome. My gp thinks that I have fibromyalgia, but because the specialist said CWPS he is not treating me for fibro.I'm on 180 mg of codeine a day, working full time, taking herbal remedy to sleep at least 5 hourse at night.Does anyone living in London knows a good fibro specialist private?I only find the fibro clinic in harley street , but i can't afford £250 for the assestmant.

7 Replies

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  • ask for a 2nd opinion it depends who you see. Some don't believe fibro exists. there was a professor doing a world wide study a few years ago but I've no idea what he is called. Amitriptyline is commonly given to people like yourself for sleeping problems. its a muscle relaxant.

  • Thank you Witchygirl

    I had all ready 2 second opinion , the first said that my mri were inconclusive, the neurosurgeon said that I have cervical foraminal bilateral stenosis, but he think that surgery want help me with the other symptoms.So the third said CWPS.My gp doesn't want to give me other referral.I've tried amitriptlyne and I had hallucinations, so I stopped take it.

  • I agree. I would insist on being refered to a Reumatologist. who should be able to do all the tests needed to rule out any other illness and give you a possative diagnosis.

    Good luck sue xx

  • Hi GabrielleC7

    I am so sorry to read that you are experiencing this issue, and I genuinely hope that you can find some resolution and relief to the issue. It may help to contact local Fibro groups in your area who could probably have more information on private specialists in your area.

    I have pasted you two links below to local Fibro groups:

    FibroAction Support Group

    fibroaction-public.sharepoi...

    Fibromyalgia Support Directory

    fibromyalgia-support.com/su...

    I want to sincerely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • Hi Ken

    Thank you for the links and your kind words.I'll have a look and keep you posted 😊.Gabrielle

  • Firstly, I'm sorry you are in so much pain. My first rheumy diagnosed chronic pain syndrome which totally confused everyone because no-one had heard of it. I then had a second opinion and was diagnosed with fibro. I have heard of CRPS but never CWPS.

    I hope you find the answers you need soon x

  • Hi Eggcustard

    Thank you very much, it's so good be able to talk with you and the other people here. Make me feel better knowing that somene understand what I'm going through.

    I will find the answers for my peace of mind :)

    I'm not a doctor, but I know that CWPS is not the answer, it doesn't explain my other symptoms like : loss of balance, insomnia, palpitation, chills at night, sensitivity to light and noise.Inability to thin clearly, fatigue all the time, dizziness, ringing ears.

    I'll keep you posted as soon as I find the answers x

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