Ankylose This! Living with Ankylosing Spondylitis

Sunday, January 29, 2006

Pillow talk

When you've got a disease that gets worse overnight, getting enough sleep becomes both essential and elusive. Mattresses matter: I find mattress/box-spring combos and thin foam mattresses painful, firm (and thick) futon mattresses ideal. Sleeping position matters: after a lifetime of sleeping on my side, curled up fetally, I had to learn to sleep on my back, almost spread-eagled. And pillows matter.

When you sleep on your back and your spine is prone to stiffening up, you need good neck support. So, eight years ago, I received (as a gift from my mother) an orthopedic pillow made from memory foam: it was probably this pillow and it cost something like C$150. For years I carried it with me, whenever I travelled, like a security blanket -- and got equally frantic when it was left behind. As it aged, though, it got progressively stinkier (it accumulated sweat from hot nights) and flatter, to the point where I kept a thin pillow underneath it, and managed quite well on an ordinary pillow.

Fast-forward to last fall, where I discovered this pillow, also using (but not completely comprised of) memory foam, at IKEA, at a price of $30. Definitely firmer than the older pillow, but definitely cheaper. It was also a source of discomfort for the first few days, until I got used to sleeping with it.

I wonder whether the memory foam aspects are strictly necessary -- that all that is really needed is good neck support. In any event, something along these lines seems essential, if you want to avoid waking up with a sore neck and shoulders, and pain shooting down your spine until it meets the pain coming up from your hips.

Friday, January 13, 2006

D-day

Eight years ago today, I was formally diagnosed with ankylosing spondylitis.

I'd been presenting symptoms for the preceding seven months, complaining to doctors about it for the preceding four months, and getting tests to figure out what the hell the problem was for the preceding two months. I'd learned the name "ankylosing spondylitis" a month before, and what it meant, and had begun taking naproxen instead of ibuprofen, earning me the most sleep I'd had in months.

I have now spent one quarter of my life with AS. In comparison with others, some of whom have gone years before being diagnosed, have had to fight with clueless physicians, or have had to deal with symptoms far more severe than mine, my case could have been much worse, then and now. I think I've got an average case: I know people whose AS is much worse than mine, and people for whom it is less severe. In no case is it ever easy.

Eight years is enough time to come to terms with it: in some ways, though, it's easier to cope with it, but harder to endure.

Monday, January 09, 2006

Reactive arthritis causes

A press release from Suffolk First -- who are they, exactly? -- that provides some basic information on reactive arthritis -- another one of the spondyloarthropathies -- and its causes.

The BBC on anti-TNF therapy and AS

Following up on last week's flurry of articles, the BBC looks at the issue of funding anti-TNF therapy, citing AS patient Daniel Knibb's case as an example. (Anti-TNF therapy includes Enbrel and Remicade.) It's interesting to see that while anti-TNFs can be used in a number of rheumatic conditions, the focus on this story has been on ankylosing spondylitis specifically.

See previous entries: UK charity demands anti-TNF drugs for AS; Anti-TNFα treatments inaccessible for many in Britain.

Tuesday, January 03, 2006

AS, Remicade and New Brunswick

In a similar vein, the Fredericton Daily Gleaner reports that a New Brunswick man with ankylosing spondylitis is lobbying the provincial government to approve coverage for Remicade (infliximab) for the treatment of AS. It appears that the provincial drug plan is lagging behind both Blue Cross and Health Canada, both of which have approved Remicade for AS.

UK charity demands anti-TNF drugs for AS

More on the accessibility of anti-TNF-alpha drugs in the UK, or the lack thereof (see previous entry): a British charity, the Arthritis Research Council, wants anti-TNF treatments for ankylosing spondylitis to be funded nationwide (there are some local trials on AS patients already under way). Until it's approved by NICE, patients will have to spend £10,000/year on anti-TNF therapies, despite the fact that they've been licenced for the treatment of AS since 2003. NICE is not scheduled to review anti-TNFs before February 2007 -- hence the ARC's impatience.

Update, 1/04: Times coverage.


 
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