Wandering Thoughts

November 6, 2005

No good name for this illness

Filed under: Reactive Arthritis — terence @ 12:58 pm
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There is a long and funny (and slightly delicate) story to be told some day about my experiences in London in May of 1999. And one of these days I’ll write it out in full. For the time being, however, I’ll spare you the details and myself the blushing, and only provide the briefest of recaps. I had just spent the (northern hemisphere) winter meandering around the Cape Verde Islands and, amongst marvelling at the beauty of those odd, lost, Saharan-sand covered ghosts of volcanoes, I managed to contract Salmonella. At the time, it really wasn’t too much of a problem though – it anchored me to a toilet for a couple of days and left me feeling shaky for a while, but was mild enough that I didn’t even bother to go to a doctor in the Cape Verdes. I wasn’t highly feverish nor was I throwing up and, as I was due to fly back to Portugal a couple of days later, it seemed sensible to wait until I could converse with a medical professional who spoke English.

So I never bothered the Cape Verde Islands’s medical system with my problems and on the appropriate date took my flight to Lisbon. When I arrived in Portugal – being the cautious type – I did stop in to see a doctor though. A doctor who, ironically enough, spoke hardly any English, which led to me having to wrap my broken Portuguese around words such as [special Portuguese speaker’s bonus] casa de banho, mucu and sangue. Which was followed by the doctor – slowly and patiently – confirming my suspicions that there was nothing more than mild dysentery to worry about. He wrote me a script for antibiotics but, because the last of my symptoms cleared up by the following morning, I never collected the meds. Instead I went surfing and flew back to London a few days later.

End of story.

Erm no – actually, more like beginning of story: a few weeks later – crashing at a friend’s house in Fulham – the damnest things started happening to the strangest parts of my body and – hey presto – I was back at the doctors before you could say “my god! how on earth did that get there”. What then followed was humorous – or, at least, has elicited laughter from those people I have told the full story to – and involved two misdiagnoses, a whole heap of waiting around Charing Cross Hospital, a professional medical photographer taking photos of my symptoms, and much anxiety before a kindly Scottish doctor said to me “Terence, you haven’t got herpes you’ve got Reiters Syndrome.” Like I said, there is a whole bundle of detail missing from this summary of events, but it’s getting close to dinnertime and I want to finish this post, so the said detail will have to wait for another date.

For now, I’ll just note that Dr Winchester’s informing me that the aforementioned diagnosis was actually a misdiagnosis had me falling to my knees and punching the air. Or at least it would have, had my knees not been swollen to the size of softballs at that moment. And had the expression on his face not suggested to me that – whatever Reiter’s syndrome was – it was probably worse than herpes.

What followed was about 9 months of extreme discomfort – swollen joints, exhaustion, and an occurrence of what was probably Iritis. Iritis, can leave you blind, although I was lucky and experienced no damage to my eyesight. I did, however, experience acute pain from it – Iritis is definitely the second most agonising experience of my life to date. Indeed, it would be the most agonising were it not for the fact, that a couple of weeks before the Iritis, I had the joy of experiencing having my knee drained of fluid by a nasty fat syringe while insufficiently anaesthetised. There were also a few other symptoms to my illness that I will gloss over for now. But, basically, what I’ve told you is a reasonable enough description of life with a type of auto-immune arthritis..

Luckily for me, about 9 months after the initial attack of the illness I went into remission, which afforded me almost two whole years of symptom-free life (read globetrotting and surfing). Less luckily, in late 2002 the illness returned and since then I haven’t been able to shake it. It’s been better and worse but never have I been symptom free. For what it’s worth, at present, it is about as bad as it gets. Mercifully, I haven’t got any problems with my eyes though, but my spine is a long slivering snake of pain, my right knee is swollen, my feet hurt to walk on and my right arm is giving me gnawing on and off pain. At times I am reduced to crutches. More than this though, I am suffering from what feels like a mild fever (although my temperature is normal) and I am totally exhausted.

All of which brings me to the point of this ramble: there is no good name for this illness. My affliction used to be called Reiter’s Syndrome; a name which seemed to fit the bill, with the word syndrome appropriately, implying – in my mind at least – a variety of symptoms. What is more, as a wannabe writer, I quite liked the phonetics of the name.

The trouble is – as I found out last year – Hans Reiter, the doctor who first described the illness and who got to lend his name to it was a eugenicist and – arrgghhhh – a supporter of the Nazis. Moreover, according to the New Scientist, Reiter, during the Second World war:

designed typhoid inoculation experiments that killed more than 250 people at the Buchenwald concentration camp.

Now one thing I promised myself, when I made the decision to blog about my illness, was I that I would really try to avoid drowning my posts in self pity. (After all, things could be a lot worse.) But that is just my fucking luck . To be afflicted by an illness that was named after a Nazi war criminal.

Thankfully, though there is an alternative name for my affliction: Reactive arthritis. A name which is being increasingly used in light of a campaign by some doctors to free this illness from its named-after-a-Nazi past (needless to say this is a campaign I completely approve of).

So reactive arthritis it is. Which is the name I use now when people ask me what is wrong with me (actually I usually say something like: “I am afflicted with reactive arthritis, left wing politics and an incurable urge to hug trees”).

The trouble with Reactive Arthritis though, is that it seems to imply that the symptoms of my illness are limited merely to joint pain. Which isn’t the half of it. The joint pain is bad, but the exhaustion and on and off fevered feeling makes things much, much worse. Likewise, joint pain alone is unlikely to kill me but damage to my heart (which can occur in reactive arthritis) might.

So I’m left with a dilemma – obviously I won’t be calling my illness Reiter’s – but Reactive Arthritis doesn’t seem right either. It just seems to imply something less than that which I’ve got. And this isn’t just semantics either as I have, from time to time, experienced the problem of some significant people (but not all) in my life not understanding just how difficult my uncooperative body makes things.

A strange dilemma right. One I never would have imagined having to deal with. But then again, I never ever really imagined having to live with disease either.

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3 Comments »

  1. […] Filed under: Reactive Arthritis — terence @ 8:25 am There may be no good name for my illness, but the English language does provide just the right words for the way I feel right now: bone […]

    Pingback by Bone Tired « Wandering Thoughts — May 2, 2009 @ 8:25 am

  2. I have reactive arthiritis too i’m on anbiotics at the moment which seem to work just a little. When I take
    them which I have been for three months my symptoms do the get worse before they get better but when I’m off them
    they get worse. I’m taking all the ones you’ve taken as well. I don’t really want to take the other rhuematoid drugs
    apparently they’re for chemotherapy and the doses aren’t capped like they are with chemotherapy. It also says that
    I’ve given up. I don’t care if people say it’s chronic. I’ll try creams and other things before I take those things.
    I know there is elmor oil you could try that and there is also one I ordered the other day could be a scam but I’m
    going to give it go. It’s my one wacky product to try that might or might not work but what have I got to lose. If it does work I’ll be laughing. It’s tom mcarthur’s natural products just heard good things about it.

    Comment by emma — April 16, 2011 @ 9:15 am

  3. Hi there Emma,

    Sorry to hear about your problems with reactive arthritis, but glad to hear that antibiotics seem to be helping a bit.

    I’m not a doctor and my advice is no substitute for that of a doctor and please bear this in mind with regards to my following comments.

    With regards to other disease modifying anti-rheumatic drugs (DMARDS), as far as I’m aware not all of them are used for chemotherapy. For example, I don’t think sulphasalazine is, nor do I think the new ‘wonder drugs’ the TNF inhibitors are.

    Methotrexate is used in chemo. However, the doses you would be taking are much lower than chemo patients take. There are still risks associated with taking it (as there are with sulphasalazine and the TNF inhibitors and you should talk these over with your doctor) but there are also risks associated with living with living with inflammation in the long term (as I discovered) and also, there’s the quality of life issues associated with having arthritis. In my personal opinion, if you can tolerate the side effects (which were very minor for me) and don’t mind the small risk, there is definitely something to be said for trying some other DMARDS, if your current treatment isn’t working that well.

    I know what you mean about not wanting the condition to be chronic. I feel this too. In my case though I was only on the methotrexate for about a year before I was able to wean off it. So taking it now doesn’t have to mean taking it for ever (although everyone’s experience is different of course).

    As for alternative remedies – they’re worth trying I guess. As you say they may help. They all cost though and I’ve spent a fair bit of money on them over the years, without wonderful results. Still, as you say, worth a try (but definitely definitely be wary of scams). If the oil works for you please let me know.

    Good luck with everything – I hope you get better soon. Please feel free to ask if you have any further questions.

    Terence

    Comment by terence — April 18, 2011 @ 12:47 pm


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