Recommend a fibromyalgia specialist.

CJHunter

Hi All,
Does anyone know who is the best fibromyalgia consultant or can recommend one. It has now been suggested that this could be the condition I have, just need answers its been some 20something yrs now and although was diagnosed with P.A for 12 of those my consultant has changed his mind ,just stating it is a chronic pain condition. Has been mentioned by my g.p and a previous consltant fibro but no difinitive tests were done.

If anyone has any suggestions I would be grateful.

Clare x

skezier

Hi Clare,

its not a good one is it... really does get to you especially with the fatigue side and the weakened muscles....

i have never officially been told i got it as such cus i asked then not to but just the same i know i have and so do they... its on the back of years of oa and pa as well and think its to do with your body trying to protect its self from the pain but it gets all wrong and says its huge pain.....

personally i think it is huge pain though.....

for me pregabalin made a huge difference. been on them now for about 3 years and 2 of those on the top dose and though it still makes its self felt i remember before.....

its something you might find helps but it can mess with your head a bit and isn't always compatible with other meds though i take oxynorm, tramadol and diclos with it as well as a load of other meds for other things.

i think i got this right.. if you ask for centers of excellence in your area for fibro it might bring up the place you need.....

i really hope you can find some help and things get easier for you. Cris x

CJHunter

Hi Cris, thanks for responding.
Yep the fatigue and pain just seem to go on forever wiv no let up.

My rheumy is sitting on the fence wiv others have seen, the fence is getting pretty crowded and looks like breaking

Will get there in the end. Have heard a prof davies at Guys is supposed to be good. G.P will refer and I am prepared to go anywhere.

Cheers. Take care
Clare

skezier

hi Clare,

would you mind letting us know how it goes if you can see one? i have a rumo who has gone for palliative and pain relief only.... be interesting though if you get some real tangible help.

the fatigue flower .... ts a horrible one eh. mine is predictable and hits in round 4ish every day... if not before actually on a bad day.

you have to give in to the fatigue even if its only for a few mins... tried fighting it and you can't beat it.....

the pregabs and also the gabapetins are very god for fibro as long as you can take then, they do mess with your head for a bit when you first get ion to them.

i so hope you can get some real help cus the pain thing actually does genuinely hurt... my skin now feels grazed and flayed over the lumber and neck ares and the pain doc has given me lignocaine patches... they help as well....

good luck and please let us know ho it goes. Cris x

CJHunter

will do.

U take care of you too

Colin1

Dont quote me on this but idont think there is such a thing as a fibromyalgia consultant. You could ask the team on here.
It seems to me that fibro is one of those unxplained things or is it just a word they use when they just dont know the answer.
Colin

CJHunter

Hi Colin, Have found Prof Davies who specializes so will have to take it from there.
Thanks for input.

frogmorton

Hi Clare

l too would be intestested if you get to see this Professor.

up here they do nowt for you really with fibro so would be very very interested.

Love and luck

Toni xx

CJHunter

Hi Toni, will post when find anything out. Am seeing G.P again on 20th so will go with my list, this prof bod at top, and get a referal.

Happy Sunday
Clare xx

skezier

Hi Clare,

you know i will be so interested in how you get on flower.... please let us know cus even though we are in your pocket its a bit muffled

i so hope the prof is a starting to some better treatment for you. hang in there. Cris x

bubbles

Hi Clare, it will be very interesting to know what the professor says. I can only sympathise with you, along with many on the forum, who have fybromyalgia, or as my rheummy said "chronic widespread pain", I said, is that the same as Fybro?, he said yes.

It is horrid, unless you have it, you find it hard to explain. I feel as if the plug has been taken out of the bath and I am draining away. You do have to rest, Cris is right, fighting it is a none starter. I get very irritable, then the pain starts to spread like a fire.

I take pregab, 400 - 500 mg a day, along with a shed load of other pills and they do make you a but fuddled at first, or when you change the dose. They do help, in varying degrees, some days are better than others and there are days when nothing but resting, will help, then you seize up, oh the joys eh. :roll: :roll:

Keep us posted, take lots of care. XXX Bubbles

CJHunter

Cheers All,
Well g.p will refer me now i have details. Hope its not too long. My rheumy said I have 'chronic widespread pai' too, he wouldnt define though as he said he wasnt a fibro specialist!!!

Anyhow will let u all know how it goes when I get to see him. Realy need to get some better speakers for my pocket

Take care all

C xx

Wonkylegs

on THursday when I was diagnosed with fibro the rheumy nurse said that what would really help was a structured programme of exercise :shock: must admit it was the last thing on my mind at the time :eek:

as well as the meds that is.

not sure that there are many tests that can diagnose it - other than the 18 point pressure test where she poked me in the specified places and noted how many of them I said 'ow!' to.

there were lots :roll: which along with the long list of symptoms I'd taken with me, gave them the info for a diagnosis.

good luck with the doc
WOnky