Advice Please

I there, hoping you lot may be able to advise. Last May I went to the GP with what I thought was a tendon problem in my knees. I had started walking for exercise (5km ish a day) and had several problems, I have arthritis in my big toes, and soon found I had pain in the balls of my feet and heels, by May I also had pain in my knees, ankles, wrists hands and elbows. GP didnt think it was a tendon problem and asked if I had RA in the family and if my hands swell. It was a yes to both. She arranged blood tests and they back negative (my family have sero neg RA). She then arranged an appointment with an RA consultant. First appointment went well, she saw swelling, said looked like typical RA. But as I could be sero neg, she would need an MRI to confirm. Anyway, no MRI, I had a scan on my hands and was told the swelling was 'skin'. Next appointment was told did not have as no RA in blood and xrays of feet didnt show bad enough arthritis. So back to GP, she suggested a second opinion, but I cant see the point in going back to the same department. So she sent me home with codeine and told to come back when its 'worse' and it should have 'developed' in my blood by then. I asked about exercise, and was told to do it when it didnt hurt, but when I said it hurt most of the time, was told just dont do any when it hurts. GP did confirm that the swelling in my finger joint was not skin. So whilst I wait for it to get worse, can I do anything to hold it off. Am stiff for a few hours in the morning and if I sit still (car journeys etc are pretty difficult) and walking seems to un-gel my joints, but GP said I was damaging them if I did too much whilst they are sore. Really not sure what to do next, so any help really appreciated. I did try cycling, but this caused a lot of swelling in my wrists (was given a splint by Consultant and its great, but every time it swells it gets stiffer, so frightened I am making worse), I dont really like swimming. Thanks for any advice offered.

3 Replies

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  • I really think that you need to be under the care of a rheumatologist until there is a diagnosis. If you have a look at the diagnosis of sero-negative Rheumatoid Disease on the NRAS website, it will be clearer to you why you need to have diagnosis and also why this may take some time.

    It is not possible to say there is "no RA in the blood" - the diagnosis needs to be more precise than this - were the inflammatory markers raised, presumably the RF was not raised, what about other tests? And an ultrasound would be more use to find synovitis.

  • Hi Kate, I would go for a 2nd opinion if your GP is willing to ask for this. Go armed with a list detailing your symptoms and family history and ask for it to be placed in your notes. I did this and it really helped. It's so frustrating when nobody listens. I paid privately in the end to get a diagnosis and was rheumatoid factor and anti ccp positive. Have you been given any anti inflammatories to help with the pain. Ibuprofen, Naproxen or Celebrex work well for some. Ask your GP about this as it can really help with the stiffness and pain so you can exercise. Best of luck x

  • Everybody is different and I can't give medical advice. My RA started with pain in the tendons above and below my left knee, after overdoing the cycling . First I was sent to a physio who made matters worse. After three months and a lot of to and fro, I finally got to see a specialist who was wonderful. Your symptoms sound familiar, but I hope for you that it isn't RA. All the best.

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