Any advice for me???

NIKKID

I'm a totally lost now. Over thirty years ago I was told I had Rheumatoid Arthritis by my Rheumatology Consultant whom I carried on to see for the following twenty years. Never once during that time did I really feel that he listened to me - to the extent of ignoring me when I asked for help with regard to my leg in particular which has now become monstrously twisted, and I have to wear a calliper to support it and hopefully stop it twisting further. This was prescribed by the Orthopaedic clinic locally and shortly after seeing the orthopods my rheumatologist suddenly decided to discharge me, a decision I did not question at the time because I was thoroughly fed up with him at that point and not really sorry to see the back of him.

Fast forward to present day and I have recently been re-referred back to rheumatology, rather against my wishes, but I attended the clinic either way. Shocked to my core when, after so many years, the consultant announced, even before he'd seen me, that my problems were not due to RA but down to fibromyalgai, a condition I'd never heard of before. He was totally insistent that I did not have RA

Now don't mis-understand me, I don't really care what the blessed thing is called, it isn't a pet, but I am really upset to think that I may have spent thirty years being treated for the wrong thing which could explain why my medication never seemed to work and why I struggle to cope. I'm obviously not going to get a straight answer from the current rhematologist but I'm stunned that not once during thirty years of ineffectual treatment, not one doctor suggested to me that I might not have the arijtoyod/

Not sure where to go from hear. Any suggestions?

stickywicket

Hello Nikkid and welcome. What a palaver! And how upsetting! I can assure you of one thing - you're welcome here whether arthritis or fibro.

It is puzzling though as fibro doesn't attack joints. If you have damaged joints in your leg then arthritis sounds a much more likely culprit. I've had RA for many years and I, too, wore a caliper until my knee revision op. If your only problems are in one leg it sounds much more like osteoarthritis than rheumatoid. Rheumatoid can be difficult to diagnose at times. I wonder if you were misdiagnosed with rheumatoid when yours was actually osteo. (Osteo can attack younger people though some medics do seem blissfully unaware of that.) And anyone, with or without RA or OA can get fibro.

I do think you need to get to the bottom of this (Well, I know I would) and maybe your first port of call might be your GP. Although they're no experts on RA, they can be pretty good at untangling who said / wrote what and how to find out more.

I don't think the 30 years has been 'lost' insofar as you were presumably not on any DMARDS for RA since you weren't seeing a rheumatologist. Other stuff you might have taken - NSAIDS or pain relief - would probably have helped rather than hindered any OA or fibro. However, if you did have RA, and hadn't taken DMARDS or anti-tnfs for over 30 years, I think you'd really know about it by now with many other damaged joints.

I love your take on not caring what it's called as it's not a pet That's precisely why I won't refer to mine as 'my Arthur', as many do. It's a disease. We inhabit the same body. That's all :roll:

You may benefit from having a chat with our helpline people but I usually find the GP helpful in sorting out what's what. If you find them unhelpful though ie defensive you could always give your local PALS (the Patients Advisory and Liaison Service) a ring. Good luck.

hileena111

Hi Nikkid
I'm sorry you've had such a hard time.
I don't call mine anything either but it does help to know what it is then you can concentrate on "managing" it.....they aren't all managed the saw way as no doubt you know after all these years.
I have OA in hips, lower spine, Ankle,and Neck...also kyphoscoliosis.......Its the GP that deals with it apart from surgery.
If you think your GP wont be much help try the helpline here
If they cant help you they can signpost you to someone who can.
Nice to meet you

Love
Hileena

barbara12

Hello NIKKID
Im with SW here fibro doesn't cause joint damage its something to do with the brain and pain signals...I would certainly make your self known and ask for a second opinion, get everything wrote down and go for it...do you have pals at your hospital they can help .
I do wish you well with all this and please let us know how you get on..x