Television ads chirp merrily about how fibromyalgia symptoms may appear “flu-like” –yeah, right. Try “rigour-mortis without the benefit of death”, that’s a lot closer to reality for some of us. Personally, I wake up mornings feeling like: a) I’ve been run over by a speeding F150; b) I’ve been run over by a speeding F-150 which has backed up and parked on me; c) I have been run over by an 18-wheeler; d) I’ve been run over by a loaded cement truck and it has parked on me. And it’s not much better when I get up.
People who do not have this disorder do not understand. I’m not trying to be difficult or a drag. My sister knows about fibro, via my process into this–and she still gets annoyed and sometimes angry at some of her friends who inconveniently happen to have fibro. People don’t choose to have this, and if our friends and family have intolerences, try to not take it personally. I dare you. You feel so damn rotten, and cutting remarks, snits, sulks and plain ignorance does not help. We are stuck with it. Get a life? I had a life–I thought everyone felt this awful. I didn’t realise constant pain was not normal. I plowed on, worked hard, raised my kid, got downsized twice, went back to school, worked really, really hard–and ran into a wall I couldn’t get over, under, through or around. Imagine how that feels.
My skin hurts. Everything (including things I didn’t know I had) hurts. I don’t like it, I try not to whine about it (I send myself to my room when I get whiny), I try not to think about it, I follow my doctor’s rules and keep up on medical literature, research articles on the 4 or 5 days a month when I can be vertical, focused, and can find the computer, I do my stretching exercises, have given up caffeine and (almost) all chocolate intake, I make sure I use my asthma medicine, because a flare of either fibro or asthma can put me back a week or two. I’m trying my best.
I’ve had this all my life. It is in all my oldest memories. My great-aunts on my father’s side and my maternal grandmother all probably had it (there was no identification for the syndrome back then), so there’s the genetic line for it.
The diagnosis is often arrived at after being treated for arthritis (I was dx’d with juvenile rheumatoid arthritis at age 8, and put on a regimen of triple compounded aspirin to be take 4 times a day), unspecified systemic lymphatic erythematosis or lupus (I was dx’d, put on an anti-malaria drug that happens to work for lupus, told my then-husband about it and he quite precipitously left on a “business” trip, afraid I’d die, and bigamously married in another country, so he’d have someone to take care of our daughter), or a psychological problem as when the symptoms are ignored by doctors who haven’t got a clue (I was extremely lucky to have a Canadian doctor who knew about fibromyalgia and sent me to a rheumatologist, where I scored 21 out 18 on the diagnostic scale–he had a couple of spots in addition to the others, just to confirm).
Everyone who has this deals with it in their own way–you can go with herbs; homeopathics; accupuncture; try the fibro-pharmaceuticals (I tried 2–one didn’t work, and one reeallly messed me up–I thought I was having a stroke, and some of the side effects remain, a year later); try the multi-phase approach: behavior modification and diet, medication to help sleep, an analgesic for pain; sometimes medicines that are used in another area are useful for fibromyalgia, like the mucolytic guaifenisen, used in a protocol of doseage titration and maintenance doses once some improvement is shown.
I have been on guai (that’s the word to use in a search engine to find more information) since 2001. On guai, you have to make sure you don’t use any products that contain salicylates, like aspirin, or lotions with aloe vera or other herbs, or use minty toothpaste–in other words, read a lot of labels. It’s a matter of substances fighting over parking spaces. The salicylates will beat the guai to a spot first, so you limit salicylates so the guai has a chance to get into your system.
Fibromyalgia onset varies greatly: it may have to do with a labile protein that fails under stress, or a lurking latentcy that takes advantage of the stress of an accident, an injury, a flu shot (don’t panic–it’s quite rare) or genetic; even severe emotional distress may trigger it. Such patients seem to do very well on the guai protocol, developed by Dr. Paul St.Armand, and often become well enough to stop treatment and resume their lives; even if they have subsequent flares, they respond quickly.
Then there are the others. Others may take longer. I’m still waiting–it may not appear to be doing anything, but it can’t hurt. For some of us, maybe nothing helps, but we go on as best we can.
For me, beading is the best therapy…as long as I remember to keep a bandaid (I know, that’s a copy-righted term, I just can’t find the little thingy to put after the word) handy. I can escape into beads, the pain recedes for a while, and I am happy, even if my aim isn’t always great and my hand shakes. I don’t mind lying on the floor, scouring the carpet for the little jewels I drop, although the cats look at me strangely. It’s life as I know it now.
…and it has taken me about 2 hours to type this out. Now I’m going to my room.
