Hi everyone.
Hope all good, After waiting for rheumatologist appt for 14 months, recieved a txt today for appt. But after waiting for such a long time, I don't even know what am I going for.
All I remember when GP said have ro see rheumatologist but for what!!
My physio and GP said I got FMS then what is rheumatologist gonna see or say. If anyone can share what was their experiance from the appt with rheumatologist.
Thank you all
It used to be that referrals to rheumatologists were made to make sure every other condition was excluded before the fibro label was given, but now it seems more and more GPs are making the diagnosis themselves. It may be that your GP just wants confirmation that his diagnosis is correct The rheumatologist may want to do blood tests, x-rays etc to rule out other illnesses.
It may help to keep a diary so that you have your symptoms and day to day struggles listed so that you don't forget anything. Likewise make a note of any questions you want to ask otherwise you will guarantee, having waited so long for the consultation, you will come out of the room and think why didn't I ask such and such.
Good luck.
For me they examined me did bloods and trialed me on medication that night help. They have also diagnosed me with rheumatoid as well so they are well worth a visit go with an open mind and see what they say. I'm much better then I was thanks to them x
Hi Cleverclog22Meeting my rheumatologist helped me understand both my FM and the complex relationship with autoimmune issues I have.
I took a brief 1 page Heath CV ( history) in date order. And spoke about current symptoms.
It was a useful appointment because he really listened. I had been ill with complex problems and from.that day it was real, believed and supported.
The history I took opened up the fact I have a genetic autoimmune condition as well as FM. This was the root of gut,skin,neuro issues.
I was from there referred to various other specialist, I have since chosen to cut those down as I have learned to accept and manage symptoms. But I will be keeping Rheumatology and they do my regular blood tests.
They can support in medication programmes,referrals to.pain clinic etc.
You could write down any questions.
I hope you find Rheumatology useful.
Take care
Gentle fibro hug.
Gigi
Good grief was this in UK and if so where.. 16yrs ago all my rheumatologist did was weight and blood pressure and tell me I had fibro and go back and see my doc..when I was really ill with pain and swollen solid legs and was referred again by hospital all I got was a phonecall and he said stuff offered on NHS site like acupuncture ect didn't exist anymore and he wasn't interested in seeing me as I have osteoarthritis and not rheumatoid..so carried on in chronic pain as my doc said there was nothing he could do for me except co dyramol...to be told a year later i had lynphodema in legs and meeadured and given long leg stocking that are difficult to get on due to pain and arthritis in hands..
Sad to hear the service varies so much from.consultant to consultant. Services are definitely being cut.I have had this consultant and hung on with them for 13 years now.
Having your suffering discounted adds to the problem and makes a real.difference.
Mine will retire soon,let's see what I get next!
Take care
Gigi
hi I had the same experience as you ! Given a bunch of leaflets and meds and sent on my way 20 years ago. I never see my doctor anymore as they don’t want to know. My daughter has just been diagnosed too and pretty much been left to deal with it on her own. I do all my own research and try herbal medicine as well as the rubbish the doctor put me on which my pharmacist informed me is killing me and is banned in most countries. I have my first appointment at pain clinic on Monday in ten years. I only have this as a nurse that does my b12 noticed my walking had got worse and got a doctor to see me immediately. I have worked all my life and paid taxes for this !
Good luck I went to pain clinic told them all drugs I was on and he made me come off them said it would damage my other organs so shows what my docs think if me.. i had to report physio as she said nothing wrong with my knees as i was in agony.turns out i haf bakers cysts behind each knee and due to fibro the fluid leaking slowly through and the pain was being magnified
.I am allowed my meds twice a week not every day and have been told no ibroprufin..
i was on diclofenic and that helped but was taken off it as it can damage heart. Plus I am allergic to the one they advise people to take now..
I am like you I try to self medicate and make sure my vitamin d level is ok as that has made me ill in past with symptoms like my fibro flare ups
.i find due to shortage of staff at docs they really don't give a shit.i have to wait 2 weeks just for a phonecall about my blood pressure results which surgeon said at hospital we're too high when I was in the other weekend due to chronic pain in my right hand side across from my belly button..they think it was possible gall bladder bike duct..so have to change my diet again.. but have to be careful due to chronic IBS which I now have and been up since 3 on and off toilet..life us just a joke.
My 75yr old sister has similar symptoms and had them for 30yrs and under specialists in Yorkshire and my sister who died 7yrs ago at 63 had similar and polymyalgia and had heart attack and died. And I think my nana had it years ago as was not diagnosed back then in 1960s. so i think its genetic in our family on my mums side.
I also didn't have a good experience with Rhumatology 8years ago. had bloods ex Ray on feet (as at the time my ankles were giving way). He never even examined me.,I wasn't offered a follow-up appointment, my test results went to my GP. I knew very little about FM. he was very nonchalant, Oh he did give me a leaflet before left appointment, 8 years on I'm still finding lack of support from NHS very dissapointing, I've had various private therapies and done lots of research myself. GP tried me with gaperpentine , just made me feel worse, I manage with low Dose nortryptline paracetamol I don't tolerate a lot pharma meds they just cause other issues
Hi.I waited 9 months for my app and like u I wasn't really sure why I was going.
Once there I felt like the consultant was just going through the motions, I felt just a number, although she did send me for x rays.
Finally got the results and FMs has been ruled out and osteoarthritis has been ruled in!!! Its in my back, knees, elbows and hands! So it WAS worth going. I will still follow this page though xx
Fingers crossed your outcome is a positive one and keep the appointment. Time flies and it'll be here before u know it.
Best wishes xx
Hi
I found my rheumatologist really helpful as he referred me on for physio and I found their advice really useful and informative and had a course of hydrotherapy.
It was a Rheumatologist that definitively diagnosed me with Ankylosing Spondylitis and osteoarthritis - the GP diagnosed fibro but new symptoms kept painfully popping up. After MRI scans and X Rays I was found to have additional problems as well as fibro. So seeing a Rheumatologist and remaining under one was a massive advantage. Now on pain patches, anti TNF therapy and due a hip replacement next month. See this appointment to really explain your symptoms and take a list/notes. Good luck x
I was referred to Rh for a formal fibro diagnosis in 2017 because GP couldn't diagnose themselves, I was told. After nearly a year, I got there, described my symptoms, she's said yes, that's a textbook case of fibro and that was that! No need, no treatment, no tests, no advice, just got me back it the door as quickly as poss. I left thinking, other than the diagnosis, why did I have to go through the rigmarole of going?
So sorry for you but I felt the same way and treated like that..I think docs just tick boxes and unless you keep getting onto them all the time with new symptoms and not coping with pain stress ect they just forget about you.. it's like when I asked to see specialist doc said well procedure now is you see physio and if they agree you heed to see one then that's the next step... Also we have patches here so you cannot ring up for appointments you have to go online..but if all online appointments full then you have to keep trying..it's just a bloody joke...
i have been waiting for an appointment since July of last year, not got one yet. mine is because i havent seen a consultant since 1002 and the chronic fatigue serve have requested it because my meds dont work
I was diagnosed with FM in 2008, along with Ehlers Danlos a genetic connective tissue disorder by a very nice Rheumatologist. Like most of us I'd obviously had it for far longer than that. I was diagnosed by the tenderpoint test which I'm not sure is used anymore.
In my case its hard to know which is Fibro and which is EDS, I might not even have Fibro as EDS pretty much covers everything symptom I get. There's a huge symptom overlap between the two.
The Rheumatologist confirmed both conditions as well as mild osteoarthritis in knees and sent me on my way. I havent seen him since 2015 when I went back due to worsening symptoms. He did make some good suggestions about coming off the morphine I was taking, which I did. And lifestyle changes including exercise and staying mobile.
But I was discharged back to GP who whilst well meaning and sympathetic, hasnt been able to help much. I cant get on with Fibro meds and I manage my own health these days.
It was a rheumatologist that diagnosed my fibromyalgia. Was a fairly straight forward appointment - and was to rule out arthritis in my hands too x
Fibromyalgia and Osteoarthritis now rheumatologist thinks something else as well
Rheumatologist 
Seen by rheumatologist 
Neurologist vs Rheumatologist 
