Palindromic Rheumatism or Ankylosing Spondylitis? No one seems to agree, but I do know I'm no longer coping with the pain

It's a long time since I've posted. I've needed space and time to process. I flung myself into work and have used obsessive over-working as a way of distracting me; so I wouldn't have time to think or dwell on how bad I've felt on so many occasions.

This morning, I've started a video diary of my symptoms to show my Rheumatologist out of desperation.

When my pain first started I was told I had reactive arthritis and possible Rheumatoid Arthritis. Then I was told I had Palindromic Rheumatism. I spent a year healing after my snowboarding accident (that bought on my joint pain), whilst struggling with severe joint pain and mobility problems, believing I had PR.

My scans throughout have failed to show any inflammation. My blood tests are only ever slightly raised and I'm negative for the rheumatoid factor.  This is not unusual. Research shows something like a quarter of people with RA and similar conditions show negative bloods. My new rheumatologist then told me that she doesn't see Palindromic Rheumatism as a diagnosis, more a way of describing a range of inflammatory arthritis symptoms, that are as yet undiagnosed.

Pain used to move around my joints making it hard to do everyday things (typing, walking, picking up a mug), and my back pain seemed to settle deep down into my hips, deep in my Sacroilliac joints, making bending, sitting, turning and all manner of things very painful.

Throughout all of this I've maintained a very active lifestyle. I've had 2 dozen sessions with different physios. I've had hydrotherapy. I lost over 2 stone. I was swimming 5 days a week immediately after the accident as the warm water helped sooth my joints, but now I go to the gym 4 days a week. I go for a walk every lunch time because being still causes my hips to lock up. I do yoga stretches most nights and most weekends I am out hiking. I am strong and I am flexible; and whilst I am still over-weight, it is not fitness or muscle-tone causing my hip issues.

In the early hours of the morning, every morning, I wake up in agonizing pain. My lower back completely locks up and the pain wakes me up. I have to make tiny repetitive movements to bring some mobility back to my lower spine/hips. Turning over in bed requires a lot of effort and I have to grab the headboard and pull myself over isntead of simply turning. Sitting on the edge of the bed before I get up leaves me crying out in pain, as does straightening up to stand and shuffle in to the bathroom.

This doesn't start to subside until a couple of hours after I get up, once I'm half way through my morning gym routine. It's the same day in day out.

Getting my bottom half dressed in the morning is an ordeal, and can often leave me in tears. Getting to the gym requires an enormous effort and sheer stubborn determination, and the constant effort leaves me utterly exhausted. The constant pain, means I have to battle to maintain my positive, happy attitude.

Some days I get really low.

In the last year, I've had 2 steroid injections. The 1st was like a miracle cure, and I was very well (still some pain in hips, but nothing in other joints and no morning stiffness). The 2nd took longer to work and didn't work for very long, but again, It was a great help. It has worn off now, and in the past 2 weeks I'm back to tears, crying out in pain and feeling really low as the pain and stiffness increases day by day.

I had to cancel my active outdoors plans last weekend, and I still feel really down about it.

I can't get in touch with my Rheumatologist. The phone line just rings and rings. I am desperate to get booked in for another steroid injection as it's my birthday in 2 weeks and I've got loads of hikes and camping trips planned over the next few weeks - but without a steroid injection I fear I won't be able to do any of the things I so badly want to do.

My mood has dipped, I feel scared and desperately low to the point of feeling depressed. I'm very tearful, my brain is fuzzy and I feel perpetually tired.

I still don't really know what is wrong with me. I saw a rheumatologist who told me it sounded like inflammatory joint pain (well duh!) and he said it was probably now time to start me on DMARDs. I saw a different rheumy after that, who said there was no evidence to start me on DMARDs and to simply take more Tramadol, which I'd already told him doesn't touch the stiffness and only dampens down the pain a little anyway.

The average time for a Ankylosing Spondylitis diagnosis is 9 years. NINE YEARS before the disease shows itself in scans. So is it Palindromic Rheumatism or is it Ankylosing Spondylitis or something else, like Sacroilliac Joint Dysfunction? Either way, it's inflammatory in nature and I don't understand why I'm not on a regular cycle of steroid injections. Oral steroids (which make me manic and psychotic, so I can't take them) are so easy to get from my GP, why not the injection?

To think that I may be in this limbo, fighting every few months for the only medication that we know works, makes me feel incredibly depressed and I really don't know what to do. I am constantly afraid that I'll be told I'm being discharged by my rheumatologist too.

I don't know how much energy I've got left to keep on fighting and maintaining what looks like a normal life on the surface.

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10 Replies

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  • Oh ShellyWelly,

    so sorry to hear about the state that you are in. You say you have a new rheumatologist. Did you change your rheumatologist yourself? Are they/were they at the same hospital? 

    In the meantime I replied to a post on pain earlier on that you may find helpful:

    healthunlocked.com/nras/pos...

    I hope that you get a definitive diagnosis soon but you know that you can always talk to us on the helpline anytime:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    Beverley (NRAS Helpline)

  • The first few times I saw the same person, on the last 2 visits however, I've seen a different member of the team, and all 3 are saying different things :( Thanks for the link.

  • Oh gosh, that really isn't helpful is it. They need to speak to one another and make a decision that they all agree on. Really frustrating for you. 

  • I really sympathise with you. I have have the same back issues you mention. My dx is sero neg and I have your same thoughts with bloods ect and afraid of discharge. I take 3 dmards plus naproxen and tramadol.

    My rheum reg did an mri and he just said O A and degenerative discs. G.p thinks inflammation still and fortunately prescribed oral preds. Which like you are like a miracle cure.

    I totally understand your frustration. It sounds like you are positive and doing everything in your power to help your joints.

    What has been said to me is to try and find a rheum that specialises in sero neg / spondyarthropothies. I know it is worrying trying another Consultant, but it sounds like you have nothing to lose. You have not been prescribed dmards, and if sounds likeyou need something. Steroids although brilliant bring on problems. I have osteoporosis now too.

    Do hope you get help.

    Best wishes Moomie

  • Thanks Moomie. I'm glad oral stroids help you, and I think you are right about possibly changing my rheumy. The lady I was seeing was brilliant, but the last 2 visits I've seen 2 different specialists and all 3 have said different things! Thanks x

  • You poor thing, I do sympathise. It took me 22 years to get a diagnosis of Spondyloarthritis/PsA because I didn't have RA factor or the nflammatory markers. I guess I just got lucky that someone too k some notice of me finally when I was complaining about pain in my feet and ankles. I'd given up telling them about my back pain after I was told that I just had to learn to live with it, so I did! All I can say is, don't give up, keep going until you find someone who actually takes you seriously. Good luck, Clemmie

  • Oh my gosh, 22 years! I can't imagine having to wait that long for answers, thank you for being so lovely and supportive x

  • Hiya Shell! Long time no see....though sorry it's not because you've been doing well, patently not. I don't have any miracle cure or specific advice except, just I'm sorry you've had such a tough year & I hope you don't have to live in limbo for another 7 years. It is worth keeping posting though, you never know someone might recognise your symptoms & able to share their road to diagnosis. 

    Keep as well as you're able, oh & well done on losing 2 stones. x

  • I so feel for you, being someone with ankylosing spondylitis myself, that has had a devil of a job to get diagnosed (and still not being treated because of a difference of opinion by my current rheumatologist).

    It does seem that in the UK rheumatologists are more likely to not bother to narrow down a diagnosis to more than just "seronegative arthritis", which really does people with spondyloarthritis a big disservice, as the DMARDs just don't work as disease modifying drugs on spondy, and even if a couple of them might have some effect, its not usually enough in the long term.  

    You really do need to be seen by a spondyloarthritis specialist to get properly assessed, and aggressively treated (especially if you aren't showing any real damage yet).  Some areas have what they call "early inflammatory arthritis" clinics that are designed to pick up spondyloarthritis early, and other areas have specialist ankylosing spondylitis clinics where the doctors could be expected to be much more knowledgeable than a general rheumatologist.   Even if you aren't showing the damage required for an ankylosing spondylitis diagnosis (which needs radiographic sacroiliitis), an MRI can show up enough evidence of inflammation in the right places to give you an axial spondylitis diagnosis, which is a diagnosis that can be treated in the same way as AS (eg with anti-tnfs) in the UK.  You just have to find a rheumatologist who knows enough to want to properly diagnose you, rather than have you hanging about taking DMARDs for years and years without anywhere near the benefit you would expect with RA.

  • I meant to add that it is well worth checking out the National Ankylosing Spondylitis Society website, and if you have any questions, their phone advice line is excellent.