Fibromyalgia Action UK
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Desperate!!

Could anyone please help me find a doctor for fibromyalgia?ive just gone through yet another horrendous time with another doctor who wants me off all meds and to just exercise I have bipolar and the doctor who I asked for a referral letter to see this private consultant wouldn't give me one I have never met or spoken to this gp before my friend had been so concerned about me she encouraged me to do this anyway she was angry and rang up and threatened them with cqc I rang back and he gave me one saying that he had not wanted me to get disappointed in case they couldn't help me!!this surgery has for months prescribed me various medications over the phone over a few months without seeing a doctor I was having really bad side effects even one night 111 sent an ambulance I was very naive not reading the referral letter before I went he made much of my mental health problems said that when I spoke to him I wasn't acute(I could hardly talk I felt so bad) he mentioned twice in the referral that I had unrealistic expectations but that I remain keen to be assessed of course I was they'd been just prescribing tablets that had really bad side effects like my face and shoulders all went into spasticity my face all pulled to the side and wouldn't release it was excruciating and frightening also extreme pain in my arms with mirtazepine so that I was pacing in the middle of the night moaning loudly in agony and this is just some of it I've been fighting for years to try to get good quality help I use meditation cbt pacing lots of other things I've learnt but sometimes it's not enough when I only get 2 hours broken sleep every night the consultant I saw read the referral letter and spoke to me in response to the tone this go set....thank you for reading there's so much other stuff but too many things to put on here all I need is a sensible doctor who listens and is solution focused not one who sabotages from the start....please help!

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Hi Tom I was so sorry to read this and just wanted you to know that.

It sounds as though you may benefit from seeing another dr perhaps at another surgery or a private GP who can do a simple straightforward letter of referral to say a neurologist .

It is then up to the specialist I would have thought to pass an opinion on what treatment he or she can offer you rather than the person who is referring you. There is always hope

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Thank you that's very kind I have had other referrals in the past from other gps which were fine I've seen a rheumatologist who diagnosed me on nhs then a neurologist privately who just said yes he thought I had Fibro and just suggested duloxetine which I couldn't even tell I was taking this was ages ago I've tried so many things over the years but it's just getting worse recently hence going to pain specialist (anaesthetist) recently I've really felt the prejudice from being bipolar I never used to get this before I was always told how well I do considering my challenges how are you?x

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I'm so sorry you have had to put up with this awful treatment.

A GP cannot refuse to refer you to a private specialist. They can refuse to refer you to an NHS specialist.

I saw a rheumatologist without any referral from my GP. I got a copy if my Medical notes from them, results of all blood tests and researched private rheumys until I found one within driving distance that had experience of and had written papers on fibro.

The downside of seeing a dr privately us that you have to continue to pay that dr if you want the treatment they recommend. Meds would also be on private prescription so very expensive.

The private dr can and will write to your GP with his/her recommendations but the GP doesn't have to follow them. For example a private dr might meet you, examine you, talk to you about their findings and write to your GP recommending medication X. Your GP might not be able to prescribe X on the NHS as too expensive or it might be one you've tried.

Another route might be this: do you have a mental health worker? Community nurse, support worker or social worker? It might be easier to talk to them, explain about the meds side effects, and perhaps say you feel you're being discriminated against because you have mental health problems--- this is being used by a dr to not treat your fibro effectively. Might be worth a try.

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Thank you for that I don't have anyone like that I'll look into it I'm a fighter by nature but you know I don't feel like I can keep doing it right now I'll have to somehow get my resolve back I appreciate the time you've taken to reply 🌹

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