Tuesday, July 31, 2007

Fibromyalgia: My personal history

Is it going to rain? My ankle's kept me up all night. Both of my ankles have a bit of arthritis going on, which I've had since before the fibro hit mein my ankles and wrists--and they were quite weather-predictive. There's a pretty strong family history of arthritis on my mother's side, so I wasn't terribly surprised when it started happening. So far, tests have indicated that it's maybe not rheumatoid arthritis, but the tests aren't always perfect. Time will tell.

Anyway, after turning my life over in my head for a while, I've sort of decided that the fibro really came on strong after my surgery in 2004, leading me to believe the surgery may be the trauma that triggered it. It was the third surgery* in my life, so maybe the other two did a little bit, and #3 was the final straw? I don't know.

All I know is, before surgery #3, which was a fairly major one, I could work a 12+ hour day and be begging for more at the end of the shift. I was a Type A+ personality, perfectionist to the extreme, and strong as hell. I went through the fisheries program at Cobleskill without too much trouble (my height was the only major problem I had; being a foot shorter than most of my classmates put me at a disadvantage), and I could lift, walk, and exercise without trouble. I went to Curves for a while, and I did great there. I took a couple months of karate before moving to NY, and I did okay with that, too.

I went through a period of fatigue about five years ago. Part of it was undermanaged asthma, part of it was severe depression, and part of it was untreated allergies. Once I got those things worked out, I seemed able to function better. Once my relationship woes were resolved, I was a LOT better.

Then, just a few short months after Brian and I moved in together, I felt a twisting pain in my abdomen. It grew progressively worse, and, because I was in Schenectady at the time, I drove myself to the St. Clare's ER, where a CAT scan determined that I had an enormous ovarian cyst that was causing twisting. The cyst encapsulated the entire right ovar, another took over my whole fallopian tube, and a third, smaller one was stuck to the right uterine horn. The pain I was experiencing was the cysts causing torsion, twisting the ovary and fallopian tube. They scheduled me for surgery that day and stuffed me full of Demerol and phenergan. Dr. A. gave me a c-section-type scar because the cyst was big enough to warrant it. Brian took excellent care of me during recovery, even volunteering at my non-profit job so that I wouldn't have to be replaced and be out of a job.

After that, I progressively grew more fatigued, with the widespread body pain of fibromyalgia. I developed ALL the telltale tender points. I cannot stand to have someone touch my upper arms or sides, and if I bump certain areas of my hip, it's excruciating. Brian has to be very careful about where he touches me, especially when he's giving me a massage, because pressure on a tender point will cause me to yelp and jerk away. Even if he's just put a little pressure on it, the pain lingers for a period after he's stopped touching it, like a bruise that lasts for a couple of minutes.

I was once able to sleep adequately. Now, I wake up and it feels like I've actually gotten worse than before I went to bed, like I ran a marathon in my sleep. After I've been awake for a little while, the hit-by-truck feeling eases up a bit, and I actually feel my best starting around 11am or so. Also, if I wake up, feel crappy, and get a drink/go to restroom/check email, then go back to bed for about half an hour, THAT actually helps me feel more rested. A midday nap is also helpful. But a full night of sleep seems to just kick my ass like nothing else.

I also want to note that I was fat for many years before developing fibro. I was skinny up until I was 20 years old, and I was about 23 when I became as fat as I am now. So that's about 7 years of being my current fatness where I was very able, energetic, and strong. Seven years where my doctor didn't tell me to lose weight, because I was healthy by all of the usual parameters. Seven years of working 12-hour shifts like they were nothing. One damned surgery, and my life was changed completely.

When I do finally get some health insurance, I will be asking my doctor to see about testing to determine if I have c-spine stenosis. That can happen if the neck is improperly supported during surgery, and I'd like to at least rule it out. Other than that, doc and I are trying things one by one to see if we can find something that makes a difference. I'm still hanging on to hope that we'll make me at least able to pull an 8-hour shift without agony and lortabs. We'll see.

*The first surgery was to remove my gallbladder, which all of a sudden went acute with no prior attacks. Number two was a breast reduction, from G/H down to a D.


Sarah said...

I just wanted to say that I really admire you. Even with the problems you have from your body, you seem to have such a healthy relationship with it. You respect yourself! It's very admirable. I HATE my body most of the time. Thanks for giving me the opportunity to think about things differently.

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