What if any treatment do you get?

[bodeia]

I was diagnosed with FM 10 years ago by the rheumatologist after the diagnosis he referred me to pain therapy - a 12 week course on coping, given a heap of meds, he also referred to physio who wouldn't do anything because of my pain levels I saw him one more time after this and he sent on my way, leaving me to cop on my own.

Basically my GP just hands out my meds and for the last 9 years or so I have been left to cope with FM on my own.

I was just recently re-referred to rheumatology by the oesto consultant who is treating my OA and operating on my hands as she thinks there is an underlying cause to my joint problems. But on seeing the Rheumatologist he just confirmed the FM diagnosis and sent me on my way again.

So I was wondering how common this is lack of any cohesive treatment.

[jacksie]

Afraid theirs no operation or cure,they will keep dishing tablets out theirs nothing else they can do,physios can't do anything either,it's not there fault.My GP is very sympathetic but he knows unless theirs a secondary ailment theirs only painkillers.I must admit i feel isolated and frustrated thinking this isn't right surely theirs more can be done,but theirs not.Yours same as you Jacksiex.

[bodeia in reply to jacksie]

Hi Jacksie, I know there isn't a cure - we wish lol, but I sometimes hear of people seeing specialist and was wondering if anyone here has, how and if it helped.

Also wondering if anywhere has support groups either via NHS or set up by sufferers, as you say it can be and is very isolating and frustrating feeling you are all alone trying to explain and cope with it.

[jacksie in reply to bodeia]

Another thing bodeia,the doctor as soon as i was diagnosed ,sent me to a",Psychological and counselling" service,i think they send a lot of people there if you have a painful condition.My friend had cancer she was sent there,i also know someone who had a bad back she also went there,i think it's code of practice.What happens is everything you say to them is highly confidential and goes no further,i'm surprised you haven't been sent there,unless you have.They could put you in the right direction too.The Fibro meeting in my area is once a month,i get more info from this site than anywhere else.I just had a blood test for Rheumo,it's come back negative in a senseless way i was hoping for a yes,shouldn't i know, but i think sometimes we want the worst, to get best treatment and be acknowledged for,it's easier to say to people they understand that,not FIBRO they say what the ecks! that and then it's, oh you don't want to work ,your faking it like the stigma of back problems.I'm sort of up in the air too,i've had Fibro three years,i'm still looking for answers and my own flag to wave if you know what i mean,once again Jacksiex

[bodeia in reply to jacksie]

Yep I was sent for CBT, which I'd already done for the clinical depression, GP now says that the depression is related to the FM - but isn't everything - I sometimes think if I went with a cut finger he'd put it down to FM - I guess that's what I find most frustrating.

It's the Oesto consultant who thinks there may be RA in my hands as well as the OA - she says the top joints OA the middle joint usually RA and both show severe damage on xrays but as my bloods come back normal so Rheumatologist just says it's FM and OA

I understand the feeling of hoping your bloods show something because as my eldest has RA her treatment is more intense she sees her Rheumy or the nurse once a month and has regular check to see the meds are working and the disease isn't progressing. Guess it would be nice if I felt the medical profession took it seriously instead of feeling we are fobbed off

[jacksie in reply to bodeia]

Agree with you,i'm reluctant to go i know he'll say, Fibro and up my dose,can't grumble too much though ,he does send me for xray and stuff if i request ,obviously providing previous tests are far enough apart.I'm with you all the way,yours chasing answers Jacksiex

[JacqDobson in reply to bodeia]

Do not allow your Dr's to put everything down to FMS! It is your body abd your life. Push and if need be make a stand. I wish I had! Yesterday we were told that I am suffering with an inoperable terminal cancer of the lung and lymph nodes in the glands in the oesophagus. My Dr has been handing out super strength Gaviscon for over six years, if only he'd had it checked. If only I had pushed. But, if only and blame throwing won't make a difference so PLEASE do not allow your Dr's to play with your lives.

[LindseyMid in reply to bodeia]

Hi bodeia

Have you checked out the FibroAction Support group Directory to see if there is a group listed near you? If not, it's worth checking with the nearest group as we don't have all groups listed (it's a free publicity opportunity for groups).

fibroaction.org/Pages/Suppo...

You may also find the About Fibro section of the main site helpful:

fibroaction.org/Pages/About...

Also, the NHS info on Fibro is now not bad:

nhs.uk/conditions/fibromyal...

[jacksie]

Theirs a Fibro organisation where i live,i'm sure if you looked up your area on the net you could find out that way.I was reffered to pain management clinic, but they only gave me the same meds as doc,unless i don't really know, you are to have morphine.I really dread the thought of having to go on morphine,i mean that's the ultimate pain killer.Failing that ask your surgery if they know of any awareness groups, you might have luck there,they are supposed to have all the info in surgery.You only see a specialist when theirs a secondary condition other than that a pain clinic is all they offer,or phsyio,or syphyciatric if you have a mental issue .Wish i could help you more perhaps someone else will give you the answer you want,keep asking,yours trying to help Jacksiex

[Ozzygirl64]

I do not see anyone(last saw rheumy 22years ago)and I do not take pain meds as nothing tried works and I cannot take any pian meds now. SOme specialist feel there is not much you can do for fibro, they often see it as 'you got it, you stuck with it, you get on with it', a sorry state of affairs if you ask me. But I do hope you find something that works for you, or better still someone who listens and understands xxxxxx