Fibromyalgia Action UK
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My Rheumatologist signed me off her books!

Once confirmed it was FMS she told me there was no need to see me again. So now I'm just left hanging! My GP is absolutely brilliant, kind, understanding and always listens to me.

But now what??

Just left to get on with this disabling condition alone. If you have R.A. Oh different story they see you every few months, blood tests etc, but FMS bye bye. Anyone else had same treatment?

Diagnosised and bye see ya!

14 Replies

I didn't even know I was spose to be signed off , kept in whatever. I was diagnosed by a rumy, and never asked to go back. I get indefinite pain and just dealing with it alone never been perscribed meds. So sick of it all . I can't think straight I talk like I can't get my words out straight some days. On beaterblockers for palpitations , totally nakkered out and I've been in sick for weeks bk to work Saturday . I didn't even know that they really should keep you in. I'm waiting to see a neurologist in March. What specialist should we come under . I thought it was neorology . Only being a nerve dept,, because I'm dumbfounded with everything with this condition it seems to effect do many areas and nobody really has told me anything x


go see your gp and ask for referal to pain clinic. also they should be able to give you somthing to help with pain they have lots of good info on fibro here.have never heard of anyone been kept in for fibro.


yes but i didnt find out untill 4 month later when my gp told me i had fibro and gave me a leaflet to read the rummy had said at appointment he would wait for blood test results to decide ehen he would see me again 6 months later i saw a copy of letter from rummy and he had also diagnosed cfs gp was usless i changed gp surgery and found a dr who speasalises in these 2 conditions and has been very helpful


See what I mean no one wants us fibro people :( feeling very down today like here I am with a cupboard full of medication and its a case of get on with it bye!


HI Lucy I don't think that the doctors don't want to treat us is not the problem. --- the problem is they don't know how to treat us!! They know so little about fibro that all they can do is give pain killers to ease the pain. I saw a rheumatologist privately 7 years ago --he was very rude -- he pressed my tender points -- and told me "to go get a life or I would end up in a wheelchair" -- did not offer any support, treatment or medication or any follow-up appointments. So I was led to get on with it myself --- which I have done by reading as much as I can about it and learning to pace/manage my symptoms. I believe we can "learn to live with it" but doctors who have no experience of it have little or no idea how to help us! They can suggest physio, pain killers but in the end it is down to us ourselves to learn how to deal with it --- extremely hard takes lots of strength of character and determination. Be strong and don't give up! Don't let "it" beat you :) xx


Thank you, very true just feeling very sorry for myself today.


PS Lucy do not forget"you are not

alone" -- we all understand and are here to be strong for each other! It means learning to handle stressful situations in a different way and being well organised -- avoiding as much stress as possible and not being afraid to ask for help when things get too difficult. Let people know when they expect too much from you and learn to say "No" (in a nice way of course!) Take time for yourself and relax. :) xx


Thank you for our kinds words. Just feeling very fed up today can't seem to motivate myself not even to eat anything

Still tomorrow is a brand new day.

Thanks for your support x


Unless you have another condition like arthritis etc once diagnosed rhuemys sigh you off to the care of your GP my rheumy was very good before he signed me off he got social services to come to my house to give me aids and got me seen by orthotics so I have special moulded to fit insoles to help with my balance... I do have arthritis but the rheumy couldn't do anything for me as everything he tried med wise made me worse... But my GP got me to the local pain clinic where I have injections every 3 months and he manages my pain meds for me as best he can

Hope that helps

VG x


Waiting for app with pain clinic very soon so thank you


I've just got back from my rummy app and they gave me an injection at the top of my butt..I already have OA in all the joints in my body, had both hips replaced too. Then they gave me SULPHASALIZINE 500MG 1 daily for the first week then 2 wk 2 3rd week 3 times and 4 weeks 2 twice a day so running up to 1000mg. And booked in for an ~MRI of my spine. the doc says i'm tender in ma lower back knees and all my finger joints, initially the app was to get results for an ultra sound they did on ma left hand, but i told him about the other pain and this was got him to give me the injection as he says it could take upto 6 weeks for the tabs to take effect till then hopefully the injection will make it less painful.

I was on crutches for my hip replacement the right one in dec 2009 and 6 months later the left june 2010 but due to the pain in my back i can't walk without the crutch, and they cut the arteryf n nerve ending so the hip is not healed either..

I've suffered severe back pain since 2000 since a car accident but no one listened to me,

I don't know if it's possible but if you have any thing that i have written down maybe ask if u can get onto some tablets like this it may help i don't know i've only taken my first one today.

Fed up to be honest i aslo had a total hysterectomy August just gone n now this on top of Fibro too but i heard anyone that has fibro may have arthritis of some sort that's why i've posted this..

Good luck all

:) xxx


Hello and thanks for replying.

I too was put on the medication you have mentioned and after about 3 months of increasing it, it gave me a DVT on my leg, but it cannot be completely blamed because we have no proof but they swelled up and wasn't able to walk.

My rheumy also gave me some injection into my thigh which did nothing but hurt me.

I'm in total agreement with you that I must have some sort of arthritis as the pain is unbearable.

I slipped a disk in my back a few years ago and not been right since.

Thanks for sharing your day with me/us.

Hugs to you x


HI I have RA and fibro,and was signed off,i think it just means that theres not a lot they can do,thats what my consultant said....and that regular checks with doc to monitor pain etc is all they can do...x


I was seeing a rheumatologist for 13 years and on salazafirine.then I saw a new RT and she said that I no longer had RA that it had apparently burnt itself out? she took me off medication and said I probably had Fybromyalgia and to take my painkillers and exercise as much as possible!!!!!!!!! And she did'nt want to see me again, I still have the same pain as before. My doctor sent me to see another Rheumy who also said it was Fybro and she gave me antidepressants and said if they did'nt help I could go to a pain clinic. I have seen several Rheumys over the years. And only the first one was any good and he sadly retired through ill health, he was the only one who listened and actually seemed to care about you.


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