Fibromyalgia Clinic

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Fibromyalgia Clinic

Postby Butterfly8588 » Mon Apr 09, 2012 10:26 pm

Hi everyone,
I've just learnt there is a fibromyalgia clinic on the NHS in London and i was wondering if anyone had been there? I've been recently diagnosed with fibro and my pain clinic person has more or less exhausted everything he has in his arsenal from what i can gather. Thing is from what he said he specialises in aneasthetics and ive never seen a rheumatologist cos last time i asked i was referred back to the pain clinic.
Do they do anything different at the fibro clinic then they would in a standard rheumatology appointment? And how can i convince them to refer me to either? I hate confrontation!

Take Care xxx
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Re: Fibromyalgia Clinic

Postby shazq » Tue Apr 10, 2012 1:51 pm

HI
I Dont think i have heard anything about that clinic? do you know the name?
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Re: Fibromyalgia Clinic

Postby TATT » Tue Apr 10, 2012 7:00 pm

There is a FM clinic in London that's run in a university can't remember which one. My gp pct won't fund it so I enquired to the doctor there who specialises in FM pain and his hypnotherapy sessions are £150 an hour. They also do other things but you will need to check. Think he is called Dr Sharma if my memory is correct. But you need to be able to spend cash. So for that reason I am out : (
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Re: Fibromyalgia Clinic

Postby Butterfly8588 » Tue Apr 10, 2012 9:21 pm

Hi there,
It was on an NHS website so i dont think you have to pay? Apparently it's the only one in the country that's NHS or so it said on the website! It's at Guy's Hospital in London apparently and he found it on an NHS website.
It says (and i quote from the sheet i printed off) " This is a national service, so we accept GP referals from anywhere in the UK"
My partner found it by accident and i just wondered if anyone else had been there. I'd have thought it would be well known on this website?

Take Care xxx
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Re: Fibromyalgia Clinic

Postby denys » Tue Apr 10, 2012 10:38 pm

Hi Butterfly the problem is most of us cant travel to London so its out for us anyway, I know about the clinic as my Aunt see's a rhuematologist there and she was talking to her consultant and he mentioned it. I think some members have been and from what I gather there have been differing results sorry i cant help more, you need to look through the site and hopefully you will get some answers :-D :-D :-D :-D
Denys

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Re: Fibromyalgia Clinic

Postby Butterfly8588 » Tue Apr 10, 2012 10:55 pm

Hi Denys,
Thank you for your reply. I can completely understand about the travel, im just over 2 hours away from it and that seems like a long way to go but obviously i know compared to most it's practically local!
Thank you for your help xxx
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Re: Fibromyalgia Clinic

Postby Ldyalb » Wed Apr 11, 2012 8:43 pm

I was referred to them on the NHS in November. I lived in London for 11 months post Fibro diagnosis in October 2010 and it was never mentioned to me. Not once. But when I was discharged from my Rheumy at London's Charing Cross Hospital (in Hammersmith, is nowhere near Charing Cross) she said I needed to be referred there.

Still not had an appointment, my PCT is digging their heels into the ground - they're reluctant to fund the treatment for me there.

They also offer private appointments, it's Prof Davies' clinic, there's a few posts about him on here. Some people have said that they have been as NHS patients and been sent away 10 mins later 'nothing we can do' but when they've later gone there privately they've been given excellent treatment.

My boyfriend is insisting that he'll pay for me to go if the PCT won't fund. His Dad's a senior manager in the NHS and reckons that sometimes paying for an initial private appointment can help as the NHS will then often fund the suggested treatment.

Personally I'm not convinced.
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Re: Fibromyalgia Clinic

Postby TATT » Wed Apr 11, 2012 9:34 pm

Royal London Hospital of Intergrative Medicine run a Fibromyalgia pain management clinic. It's run by Dr Raj Sharma. It's the one I talked about in previous post. My pct won't fund as they have alot of cancer patients which is fair enough. So I can't go. Don't know if they have better results than pain clinic but I do lean towards hypnotherapy helping with pain. For example when I am in pain I hate it and because it's been going on for years it drives me mad. But, sometimes when I am waiting for meds to kick in I have on occasion relaxed and focused on the pain as a postive message in my body as opposed to negative. Even though the pain is still there and even same level the way I feel it changes.

So that's why I would like to try hypnotherapy but I have not been to a pain clinic yet so might try that first.
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Re: Fibromyalgia Clinic

Postby sarahqueen » Fri Jun 08, 2012 1:43 pm

I work inbetween Royal London and Guys (near Bank tube) so I am wondering if it is worth trying to get referred even though I don't live in London. Do you know what they do?
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Re: Fibromyalgia Clinic

Postby 2steps » Fri Jun 08, 2012 9:47 pm

I went to Guys last week and saw Dr Toby Garrood, think he's a Ruemy, also saw the phsycologist and Physio. Will wait till he contacts my GP. Duloxotine was suggested but I can't tolerate anything which slows up gut transit but will try it and see.

I was also told Guys might become a centre for Fibro and research is a possibility. Travelling there is such a pain though, a taxi driver said if I coudn't walk any distance to ask for patient transport at Guys, door to door service but I don't know what criteria has to be filled.
Toby Garrood had heard of the Rituximab trial but said as yet it has not been repeated. I did ask about Sodium Oxybate but got no answer.

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