Wandering Thoughts

September 22, 2012

Hurting

Filed under: Reactive Arthritis — terence @ 10:43 am

Possibly my jandals were the culprit. Maybe I wore them too much, and they were too hard on my feet. Or perhaps inflammation returned because of my poor diet. Or perhaps the cause was exhaustion in those last few, too-busy, weeks in Honiara. Or maybe my arthritis just came back because that’s what it does.

Really, this time it had barely gone away. After the major relapse in 2008 it got better in 2009, was quite good in 2010, and then got a bit worse in 2011. Since 2008 I’ve never been well enough to surf properly, and sleep’s been hard. But I have been able to walk a fair bit, and day to day life had been ok.

But in June sometime the underside of my right foot started to hurt. Usually when I have a relapse it happens overnight, but this was slow, up and down, but with downs outweighing the ups. By the time I got to Wellington in the end of June I was too sore to surf. And a few weeks later struggling to walk. My hip, shoulder and back have joined in now. My back gets me when I sit. My hip when I lie. And my foot when I walk. And with the pain comes fatigue and inertia. And I’m worrying about my heart. I’m worn out. And sick of being sick.

I’m lucky too: helped by my wife and parents, and money. And being a PhD student is easier than if I were someone who made a living from physical labour. Lucky and tired.

For complicated reasons I can’t take methotrexate right now. But I need to get my inflammation under control (along with anything else I can’t risk any more damage to my heart). I probably won’t be able to get on TNF inhibitors unless I’ve been taking methotrexate (and I don’t know if you can travel when taking these anyhow). So my plan is a few months on steroids. Which don’t work that well but will help. The trouble is, it looks like I now have to wait, several months possibly, until I can see a rheumatologist to get steroids prescribed.

If I’ve learnt anything from all this it’s simply that actual illness is only a small part of being ill. The real story is you, and the intersection between you, disease, uncertainty, your friends and family, the country you live in, what you hope to do, and what you’ re happy doing without.

2 Comments »

  1. Hello My name is Kim ,I live in the San Diego area of Ca. I have been reading Your story & I can’t believe the similarities of My med problems to Yours. I am now almost 57 & have suffered with this since an awful bout of Sheiglia in My last year of Highschool . I had I think a really bad uretitis remember a IVP & a iodine reaction . I then had swollen ankle ? I remember falling& pain. I had elevated sed rate ? Uric acid not sure but some Dr. Put Me a Cholichine ? I was17 ! I think I got better & than again I got I’ll Somthing with pain ? Leg somewhere Again High sed rate & a weird leg ulcer . I believe I was ok again until ?81 82 then awful ? Told IBS stomach cramping low grade fevers ? Thyroid off swollen lymph neck nodes ? Neck pain bone spurs ?herniation Fusion ? Congenital ? Put on codeine WHICH IRONICLY HELPED THE BOWEL funny a bit of narcotic will dry anyone’s bowels up . I forgot fatigue then I got chest pain shoulder pain ? Costrocondritis? I was a nurse I asked ? DO I HAVE REITERS ? Saw soooooo MANY DOCS no real answers . Sick on & off 2 neck fusions Other swollen joints on & off 2000 bedridden 3 months SEVERE low back & leg but pain Dg with spinal stenosis spondylitis bone spurs Etc . Was on high doseage of OxyContin & a fentanyl patch also enough to have Ha Ha killed a horse . I refused surg no real pinpoint for the pain was given . Laid there for almost 4 months . I graduatly improved then high Bp again & now Doc believed some chest pain On meds told coronary art spasms Now 2012 hands look like sausages & now have aortic stenosis valve at 1.8 told at 1.3 surg needed or if leaking occurs . I HAVE OVER THE YEARS SEEN AT LEAST 3 Rheumitod Docs And asked DOI HAVE REACTIVE ARTHRITIS ALL 3 have said no ???? None of all above is related RIGHT sarcasm ! There reason a neg HB 127or whatever it called.My tailbone is deformed it hurts to sit I do better upright & moving slow Ha Ha one needs to laugh ! Well after reading Your story I have lots of new research & information for the DOCTORS on the disease that has crippled Me . I believe The Cardioligist will find it quite interesting I asked is all this inflammation somehow the same process MAYBE it is time for Somthing other the pred epidurals shots here & there +I have damage to nerves from many bone spurs & live on ms . I WANT TO THANK YOU FOR BEING SO OPEN ! I hope You catch some more good waves PEACE ,

    Comment by Kim tru — November 21, 2012 @ 7:04 am

  2. Hi Kim,

    That sounds like a real challenge. I’m not an expert but I think it is possible to have Reactive Arthritis and be HLAB27 negative (although I am definitely HLAB27+). Once again I’m not an expert and my advice is no substitute for that of a doctor, but have you considered the possibility you have Ankylosing spondylitis (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001457/)? It’s a cousin of Reactive Arthritis and — to my non-expert eyes — what you describe possibly sounds similar to it.

    If you did have Reactive Arthritis or Ank Spond it would be great to get a correct diagnosis as there are a range of medications available (methotrexate; TNR inhibitors) that, while they aren’t cures, may make you feel a lot better (they do have side effect risks of course, but then again, as you and I know, so does not being treated.)

    Good luck with finding out what you have and good luck with the open heart surgery. It sounds frightening but, while it has risks associated with it, they are usually very, very small. I’m incredibly grateful for having had it. It literally saved my life.

    As I said, I’m no expert but please feel free to ask any more questions you have.

    Terence

    Comment by terence — November 21, 2012 @ 9:34 am


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