Trying to find some answers

May53 Member Posts: 6
edited 28. Nov 2023, 14:11 in Living with arthritis

Hello . This is my first post, I was diagnosed with polymyalgia in 2014 but was A Typical, so was referred to a rheumatologist. I saw many, hardly ever the same one twice and each time I had a different diagnosis. I then saw a lovely rheumatologist who decided to call it RA despite me being Seronegative. I have an annual RA check at my GP's despite mentioning that I actually do not have RA. I was started on Hydroxychloriquine which did nothing, then Methotrexate, followed by Benepalli , them Methetrexate and Humira. I am told I have Inflammatory arthritis and sjogren's although I have never been tested for the last one. I have had a new hip and both knees swell and cause a lot of pain. I can only walk a short distance and steroid injections help for a while but I have had so many. My hands have got deformed but whenever I mention my hand or knees I am told it is all Osteo Arthritis, same with my hands. I am confused as after all this time I cannot tell one from the other. To add more confusion Fibromyalgia is being blamed by a physio and I can't see how if my pain responds to Ibuprofen how it can be Fibromyalgia? Can anyone tell the difference? Thank you in advance, sorry for the long post.


  • Ellen
    Ellen Moderator Posts: 1,668

    Hello @May53 welcome to the Online Community.

    Sounds as though you have had a very confusing time with different professionals suggesting various diagnoses. I'm not sure how much people here can help, but I am sure they will try. Many of them have confusing diagnoses and multiple diagnoses too.

    Do you still see a rheumatologist? If so I would be inclined to take their diagnosis as the most likely. Do you receive a copy of the letter sent to your GP after consultations with your rheumatologist? This can give valuable information too which you can use if someone (at the GP's practice?) queries your diagnosis. In addition the medication you are taking does tend to be prescribed for inflammatory arthritides.

    Many of our members have gone on to develop Osteoarthritis as a result of joint damage caused by their inflammatory arthritis this is true and fibromyalgia as well.

    I suspect you have done quite a bit of research into your condition yourself so apologise in advance if you know all of this, but would like to add a couple of links which might help a little:


    Hopefully some of our members will come along soon to share their own experiences.

    My best wishes


  • frogmorton
    frogmorton Member Posts: 29,550

    Hi @May53

    So frustrating when no-one seems to agree. Possibly you have all 3?

    Sero neg RA, OA and Fibro it is possible.

    With the hands it's usually the joints which are affected which tell them whether it's the OA or RA.

    Quite often we get OA as a result of joint damage from the inflammatory arthritis.

    So confusing and frustrating isn't it?

    Take care

    Toni x

  • May53
    May53 Member Posts: 6

    Thank you Toni. My affected joints are hands but mostly the middle knuckles in the fingers and thumbs. I have been told those are O/A. My knees are half and half. My left hip had a biopsy as something destroyed it very quickly. The biopsy showed nothing. When I have had fluid taken from my knees it is clear and nothing shows up. I did have high ESR's to start with and steroids really helped but I am only on 1mg now. I do have P ANCA which I have Googled and think it means I could develop vasculitis but when I asked my rheumatologist about it he said that I don't have it yet and that is why he listens to my heart and tests my urine. He hadn't done either for a few years. When he did I had blood in my urine. After it being checked at my GP'S and blood still being there it was decided I am someone who just has blood there. I last saw him in May 2022. I requested an appointment and he wrote to my GP saying it wasn't likely. I sent another message and I had an appointment sent yesterday for November.