Swollen fingers and joint pain - mystery

All my fingers have been swollen for over 2.5 months, they won't bend and are painful at the base. Each week it gets worse - wrist pain, forearm/elbow tendon pain, shoulder joints, hips ache when sleeping on side, now pain at random finger joints. 2 years of this now.

Rheumatologist Blood tests all clear. US scan today - no active synovitis found. Sonographer so apologogetic, says Rheumatologist needs to investigate in depth - but I might actually get discharged back to GP.

Any clues? What should be my next move? I can't wait around for an NHS appointment that might never come.

Comments

  • Apache
    Apache Member Posts: 7

    Hi

    Recently Had similar problems ended up at hospital. You may or not be same but turned out infection of joints reading some articles arthritis suffers can be prone to this.

    Consultant was very concerned and immediately prescribed oral steroids 8 tablets all at once for 2 weeks and antibiotics but had to visit my GP for further 2 weeks supply eventually swelling went down .

    Not sure if this helps

  • AndyT
    AndyT Member Posts: 41
    edited 22. Mar 2022, 10:55

    Thanks @Apache , thanks that's interesting, did you go to A&E ? Did they find out what had caused the infection?

    I've not heard of it before, did a bit of a search and found 'reactive arthritis' which I seem to have most of the joint symptoms of (swollen fingers, joint morning stiffness, low back pain, tight ankle tendons) and can be caused by food poisoning, STD's etc.

  • stickywicket
    stickywicket Member Posts: 26,766

    It does sound as if ReA (Reactive Arthritis) is a possibility. Did your rheumatologist mention this or did you, as you seem clued up, mention it to him / her? I think it can be hard to diagnose. Perhaps your first step might be to go back to your GP armed with a print-off of Versus Arthritis's page on it https://www.versusarthritis.org/about-arthritis/conditions/reactive-arthritis/ and ask what he / she thinks. Other than that, if you " can't wait around for an NHS appointment that might never come." all I can think of is that you see a rheumatologist privately while bearing in mind that, if it's not ReA, you could be wasting your money. I'm sorry. Some things are very hard to diagnose.

  • AndyT
    AndyT Member Posts: 41

    I last saw my Rheumatologist in early Feb, and have only found out about reactive arthritis a day ago - they didn't mention it or any other possible causes at the time.

    Thanks for the versus arthritis link on the subject, I hadn't seen that, it's very good and has more detail than the NHS page (and a couple more matching symptoms) I wonder if there's any link to covid infections - my first finger swelling coincided with coronavirus arriving on the scene, I never had any health problems before then.

    I was thinking the same, talk to my GP about the possibility of reactive arthritis. Also considering getting a second opinion on my problems from a private Rheumatologist, to see what other investigations could be done.

  • stickywicket
    stickywicket Member Posts: 26,766

    If you look on the Coronavirus forum (Life With Arthritis section of the website) a few people feel they have either contracted an inflammatory arthritis or had it flare immediately after a covid vaccine. I don't think there's anything official out on it but it would seem that the vaccine could have triggered somethng.

  • AndyT
    AndyT Member Posts: 41

    I did speak to my GP about the possibility of reactive arthritis, as I have all the listed joint symptoms - but he was dismissive of it, without any record of having a noticeable infection.

    I have booked appointment with a private Rheumatologist, as I want to see what other investigations are possible, and explore other types of scans such as MRI / CT if they could shed some light on what is going on with my hands and forearms. Unfortunately I still have to wait a month to see someone!

  • stickywicket
    stickywicket Member Posts: 26,766

    Just a heads up. MRI scans can reveal more but are expensive. It must be horrible not knowing what's going on, though. It certainly seems related to an inflammatory arthritis. Are you on any meds? (Sorry, if you've mentioned before. I come and go on here.)

  • AndyT
    AndyT Member Posts: 41

    Yes aware that MRI is expensive, I don't expect I would be offered one on the NHS any time soon if at all, and tired of not knowing what's going on. Not on any medication so far.

  • jamieA
    jamieA Member Posts: 268

    Hi @AndyT

    Your first paragraph sounds like me 18 months ago - those were all areas I was struggling with. I was diagnosed with psoriatic arthritis as I have a family history of psoriasis and the tests for rheumatoid arthritis were negative. I think I'm right in saying that the rheumatoid factor (RF) and CCP tests for PsA patients is seronegative. I've read that there are other forms of inflammatory arthritis that are also seronegative.

    I was told by a rheumatology nurse that PsA can be triggered by a virus and I reckon there's a good chance I had covid 6 months before being diagnosed with PsA - but was never tested.

  • AndyT
    AndyT Member Posts: 41

    Thanks Jamie. Do you have psoriasis yourself or just other family members?

    I have read about PsA and wondered about it as my auto immune bloods always come back OK, but I definitely have something going on. My father has small areas of psoriasis but I don't have any I've noticed.

  • AndyT
    AndyT Member Posts: 41

    Bit of an update on this - found I had all the 'joint symptoms' of ReA , asked my Gp about it, he didn't think it was likely without significant infection prior, but was concerned about my weight loss (12 stone > 11 stone) so he referred me to a Rapid diagnosis clinic. At the appointment I was told they look for cancer in people with non-specific symptoms!, had a thorough review with a specialist nurse who recognised that my swollen blotchy fingers and temperature differences aren't right. Had a comprehensive set of bloods done inc. Coeliac & HIV, and a CT scan of chest/abdomen/pelvis on the same day.

    The CT scan came back fine, still waiting on some of blood test results. They then decided to bring me back in to MRI scan my head, to look at the pituitary gland and part of the brain near it. Still waiting on the results of that - all I interesting stuff and I can't fault their willingness to help me, but warned that it may lead to a dead end and discharge to gp.

    On the Rheumatology side - I went to see a private Rheumatologist last week - very different than the dismissive NHS one I've seen before. He diagnosed me with Raynauds for a start (which was dismissed by previous rheumatologist) he checked my hands thoroughly and even listened to tendons in my palm with a stethoscope while I moved my fingers - he could hear them 'grating' on each other, nodules on the tendons. Recommends an MRI scan of the hands & thermology, and combined with the recent blood test results, thinks he should then be able to get to a diagnosis. So relieved not to be palmed off as needing physio or trigger finger treatment!

  • jamieA
    jamieA Member Posts: 268

    Hi@AndyT

    Yes I do have psoriasis but it's virtually disappeared over the last 15 years, I've also got 4 siblings with psoriasis and my dad had it badly. None of us had ever heard of PsA before I was diagnosed. When I was diagnosed with PsA my psoriasis wasn't apparent on my skin as the only place I had outbreaks at the time was in my ears. The professor I saw - the one who initially diagnosed PsA - only saw me by chance as I needed my knee drained and the doctor doing it couldn't get a drain in so called her boss. He had previously been a professor of rheumatology but had switched to run a 2nd line A&E department which is where he saw me. My swollen hands, wrists, fingers, knee and shoulder joints all pointed to some form of inflammatory arthritis but the RF and CCP blood tests didn't show it. He out of the blue asked if I had psoriasis and said it didn't matter my psoriasis was almost gone - he said that having someone in the wider family with psoriasis can be enough of an indicator for PsA. He also said that people with no signs or diagnosis of psoriasis can get PsA. I'm pretty sure it's the discounting of other things that leads to the diagnosis of PsA as there seems to be no specific tests. I'm an engineer by training so it's never really sat well with me how they came about my diagnosis.

    It's good you are getting somewhere now and I hope the progress to diagnosis continues.

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