Monday, April 9, 2007

fibromyalgia

I mentioned fibromyalgia in my profile. It's a little-know condition so I thought I might use this opportunity to let you guys know what it's about.
As I mentioned, fibromyalgia is like muscular rheumatism. It's diagnosed by a rheumatologist (arthritis specialist) primarily by the identification of a number of tender points on the body. They don't know what causes it and it's not actually a disease, it's a syndrome. That means it's a group of symptoms including body-wide pain, limited muscular endurance and fatigue.
I was diagnosed with FM (fibromyalgia) about 8 years ago. One of the main reasons I started going to Uni was to find a career that I liked and am good at but that I can work on a part-time basis so that my body can cope and that can move with our family (we move every 3 years or so because my husband is in the RAAF). I dabbled quite a bit before finding graphic design, and hopefully I will eventually be able to work from home as a designer in some way.
I live on pain-killers, taking panadeine forte (pain-reliever), ibuprofen (anti-inflamatory), Restavit (a muscle relaxant)and Tramal (another pain-reliever). I use magnets - the sash-like thing I wear is a strand of magnets, an essential oil for headaches and do hydrotherapy twice a week. I also have a muscle rub cream and use a body-length electric body-massager. My next level of medication, which I'm trying to avoid, is morpheine.
It's not uncommon to have people's jaws hit the floor when I tell them of the medications that I take to cope with day-to-day life, but you've got to remember, I've been taking some of them for years - literally - and the body builds up a degree of tolerance; the Tramal is only a new addition, because the others weren't working as effectively any more. Some days though, the only thing to do is go to bed.
I couldn't manage without my husband who cooks, cleans, washes, etc etc etc, especially with 2 kids. I'm on a disability pension, have a disabled parking permit and on an average day can't walk 500m (we've used a pedometer to measure it) without my back seizing up.
My boys are great; they've nearly always had a mum who can't pick them up or play on the floor with them. They know to keep the noise down if I come home from Uni and collapse in bed for a couple of hours. If I say I'm sore, they know that I'm more likely to get cranky quickly and will try and tone things down if I ask them.
I've encountered a lot of doubting Thomases over the years, (including doctors and family members) after all I look 'normal'.
So that pretty much sums it up. I tell people when they ask that FM is like muscular rheumatism, it seems to make sense to people. I'm not after sympathy - just understanding.

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