Hi Does any-one see a Specialist for ... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Hi Does any-one see a Specialist for their fibro ?

sueuk profile image
10 Replies

Although i have a very good doctor ,I have just been given tablets and left to get on with it , I can barely manage to do any-thing , I just wondered if any-one else was the same or those that do see specialists Can they actually help ?

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sueuk profile image
sueuk
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10 Replies
Twiglet profile image
Twiglet

Sadly that seems to be the case with lots on here. Told you have fibro given a leaflet and pills and left to fend for yourself. I dont have a specialist and honestly wouldnt know how to go about getting one. xx

ichelle profile image
ichelle

I see a specailist in rheumatology named dr. Ravindran, he is based at coventry hospital and rugby hospital he is very thorough with his investigations and seems to genuinly care about his patients.

jazher profile image
jazher

I havent seen a specialist for fibro. I have cfs/me aswell and went to see an immunologist called dr spickett at newcatle rvi. He was excellent and has refferred me to clinic in keswick which is near me, but i think its more for my cfs/me.

Even though he has discharged me he has wrote in his letter that if i ever need to see him again he will be more than happy to see again.

LindseyMid profile image
LindseyMid

I saw a consultant - Prof Davies - for advice on medications. I saw him privately because I couldn't get to see him on the NHS at that time (this was 5 years ago). He only helped me with medication recommendations and modified Myers cocktail injections to help combat flares.

I also see a myofascial release specialist massage therapist and have done for 5 years. I have also accessed other treatments, both privately and on the NHS - physiotherapy, CBT, supplements, pilates and exercise, etc.

There isn't such a thing as a clinic where you can get told exactly what to do and get to try every treatment that may help. Even in the best clinics for this kind of condition world-wide, you still need to have some input into your care. I really recommend educating yourself to become an expert patient - I'm currently putting up an old series of articles on this on the FibroAction Blog here for people to discover anew.

ZonaB2 profile image
ZonaB2

I had fibromyalgia for about seven years prior to diagnosis by a very rude Rheumatologist. However, about a year later, a PM&R (Physicial Medicine and Rehab) physician was the one that asked the questions that should have been asked up front and began to address the issue of non-restful sleep. The first night that I actually rested made a huge difference in my pain level and my pain tolerance.

I have just found a PM&R doc locally and have seen him one time. I will be going back to him soon because I have been struggling to fight off a full-blown flare-up for more than two weeks now...and can't seem to kick. This will tell me if he will live up to my expectations.

I am in the United States...in Mobile, Alabama.

Ebony profile image
Ebony

I guess as there is no cure for FMS there are few specialist clinics, I have also been told that it is most likely that FMS and ME/CFS are the same condition.

I was referred to a pain clinic in Bristol but there was nothing the specialist could do for me, she was great and gave me loads of information, told me which medication was avaialbe for FMS but at the end of the day there is no cure and no known treatment for FMS.

gypsycrafter profile image
gypsycrafter

i see a Rheumatologist in mansfield. it is a new hospital and all the necessary areas for treatment of fibro ie hydrotherapy, acupuncture, physio, psychologist, pain management. the staff are understanding and helpful and have good dialogue with gp who is also very good. i can see i am very lucky to have these facilities on my doorstep!

C_M_B profile image
C_M_B

I saw a Rheumatologist and he diagnosed me...but I was then referred to the "Arthritis Society" for further information and treatment. I haven't been into the Arthritis Society yet, still waiting on the call (it's been almost 6 weeks now). Sorry I can't be of much help....when I go and if it proves to be beneficial, I'll post more information. Promise!!

*Gentle hugs*

westgate profile image
westgate

Good morning to you all!!

I have been to see a lovely specialist at Basingstoke hosp. Dr siefert. His role 'in my opinion' was to ensure the correct diagnosis of FM. To check meds and their suitability. Also to try to sort out anyother problems ie sleep, pain and to try to provide solutions / advice. I was a bit hesitant about being discharged, but it was just like a safety net really! i know i can go back anytime.

A key thing to remember is that we are all individuals. FM is not the same for eveyone. As there is no cure, there is no magic wand when seeing medical professionals. Keep this in mind before you see your gp or specialist, think realistically what you want to gain out of the appointment, if you go wanting to be cured - you will walk away disappointed. Believe me - they are just as frustrated as we are that there is no cure!

My mum - bless her tries to wrap me in cotton wool (im 42 married with 2 kids!!) I have friends with cancer, one died at the end november 2011 aged 50. I tell her 'look what i have ISNT going to kill me, it just really hacks me off'

Have a great day everyone!

xx

JeannieMc profile image
JeannieMc

I finally got to see a rheumatologist yesterday, and he was rubbish. There are good ones out there but you have to find them. I am going back to my GP as I specifically asked her not to send me to Barnsley as other FM sufferers said not to go there, but an appointment was made there for me anyway!! I am going to have to 'fight' for help I think, that's if I have the strength left.

Let people know what area you live in and they will be able to help you. I wish I had gone back to my GP after she had referred me to Barnsley but foolishly gave it the benefit of doubt!!

Good Luck.

xxx

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