(My hands/wrists and arms hurt too much to continue onto the Japanese part... sorry; I'll do that when I can. / 手と腕が痛くなって日本語の部分が出来ませんでした。 また少しよくなったら書き足します。 悪しからず。)
One of the first things I did when I figured out I had fibromyalgia (FMS) last year was to try to find a fibromyalgia research program nearby. Luckily, I found one at the clinic run by University of Washington, (almost) right next door from where I live!
Why? I know some people are afraid they'd be guinea pigs in a research program. It was because I was feeling so crappy after our wedding in September, I was desperate for any help (I also had a scary day that summer when I couldn't even cross one crosswalk without excruciating pain in some muscle and stopping, so that really freaked me out). And because there was so little information out there about how to feel better when you have FMS. There are standard blah blah blah's about what happens, what the symptoms are (it hurts all over your body, you're tired all the time, you become even more of a space cadet from "fibro brain fog"), but not much on what could be the cause (they don't know exactly) or what makes you feel/get better. (Except for pain meds and SSRI/SNRIs which may or may not help you suppress the pain.)
Fibromyalgia seems VERY common. By some estimates, 8 to 12 million people in the U.S. have it. That's like 1 in 22-33 people, which is about the size of a normal person's social circle. So naturally, every time I talk to someone, it seems they know someone who's had it ("oh, my mom's friend has that;" "yeah you know, so-and-so has that"). Not to make light of any cancer by any means, because cancer is devastating, but that's much more common than, say, breast cancer. About 4 to 6 times more common.
So why is there no public awareness campaign, colored ribbon, or charity walks (or whatever) for this disease, which takes away life-as-you-know-it from so many people? My theory is that no one dies from it. It's much more traumatic to see someone die; or see them go through chemo therapy, be in excruciating discomfort from treatments for a period, lose hair and/or lose a breast, than seeing someone with FMS whose symptoms are invisible and persistent. People with FMS probably stop complaining after a while about their relentless pain all over the body all day every day, afraid to alienate friends and family. All our body parts are still intact. So we don't have those friends/family advocating for their lost ones or lost body parts.
(To prove this point, when a famous Japanese former news anchor killed herself supposedly because of her agony with FMS, a flurry of attention was paid to the condition right after.)
Another thing is, very few people get completely better from it, so there are no "survivors" who are pumped up to advocate for the remaining/upcoming patients. People with FMS are always tired and in pain, and a lot of times blood flow to the brain decreases that they feel like they may not be as sharp as they used to feel (my theory is your brain is busy reacting to the "ItHurtsItHurtsItHurtsItHurtsItHurts OuchOuchOuchOuchOuch" thoughts that it has little room left). When you're tired, in pain AND feeling dumb, it's kind of hard to lead a great public awareness campaign.
Also since the condition varies so greatly from one person to the next, which means each person's etiology is very individual, there is little hope that we can create a drug or "cure" to help all FMS patients. It's a complex, often mysterious series of symptoms, which affects more than one body part. It's not like Viagra, where they could say, "Look! We made your penis stand up!" That means the big drug companies are not that motivated to put money into it or create public awareness about the condition (have you noticed that a lot of PR campaign about a condition usually comes after some drug comes out?).
All of this results in poor information distribution, and less awareness in the medical community. Although it is a distinct set of symptoms and it's known that FMS patients' central nervous system is somehow affected in a particular way to screw up our pain mechanism, a lot of doctors still call it a "waste basket diagnosis," or something that's "all in her/his head." Some say it's "difficult to diagnose," but I've learned that for a doctor who knows what she/he is doing, they can take a systematic approach and diagnose you fairly easily (it may take time and lots of tests, but it is very clear).
This is kind of understandable, considering in modern medicine, doctors are encouraged to have only one "specialty," whether that be neurology or surgery or family medicine. As any specialist's practice is focused in one area, doctors tend to dismiss what doesn't fit in the mold/thinking of their particular practice. Most of the time we see a family practice physician who is required to know a bit about hundreds of conditions if not thousands, and since most of them don't come across an FMS patient very often, it's only fair that they may not be most up-to-date about it (although some doctors are willing to learn more than others). A lot of the doctors have heard about it, read about it in some journal, which may or may not be up-to-date. So rather than "I've seen a lot of this, I know what to do," it's more like, "I've heard that this may or may not work for some FMS patients."
While I really liked my naturopath, I realized, and he realized, that his expertise may be limited in order to stabilize my urgent symptoms and possible underlying infections. He was diligent enough to test me for - and find out - my vitamin D deficiency and Epstein-Barr virus (EBV) infection, but wasn't really comfortable to interpret the EBV data as he hadn't seen enough of it.
So I figured, I need to get myself close to the source of FMS information - the people who are actively trying to find out what works. (This was before I found my doctor at Fibromyalgia and Fatigue Center, who is working to stabilize my immune deficiency.) I wasn't the type to sit back and wait to see if someone would deliver some latest drug to me via an ad in REDBOOK magazine. I'd have to become an expert myself, so I can manage my care and symptoms, choose what treatments I want - I need to become my own health care manager, not a passive patient!
The big drug companies may not be interested, but NIH is concerned enough to make a grant for fibromyalgia research, and there are people at Univ. of Washington (UW) Fibromyalgia Research Program who cared enough to apply for that grant. And their research program doesn't involve drugs; it's more about effects of self-management of pain through progressive stretching/strengthening exercises and proven pain management techniques, so the pain doesn't get worse and hopefully get better. The program also teaches us to kind of trick our brain, so it would be distracted from pain, so to speak. They also taught us: Endorphins we can make our body produce is more powerful than any opiates, even morphine; so if we can trick our body to produce it, their theory is that it must help our pain with no side effects. Sounds good to me. (It also helps that it's not one of those double-blind studies, so everyone who participates get the most effective program.)
I Google'd them, contacted them and signed up a long time ago (like 6 months ago), but because I was recovering from an acute Epstein-Barr virus infection (a.k.a. mono), they had to have me wait for more than the normal 8-week waiting period (they were afraid my body was too weak to start the exercises). So I just started a couple of weeks ago. We meet with a health psychologist and physical therapist every week for 8 weeks, to learn better pain management skills (tricks of the trade).
One of the problems with FMS patients is that since it hurts everywhere all the time, it becomes hard to get up and move about (sometimes it feels like someone's inserting needles into my feet/legs/hands/arms/back/neck - other times they're sore - other times it feels like some broken glass particles are going through my veins every time the blood pumps). Just like when you wear a cast on a broken leg or arm, not moving around weakens/shortens your muscles, bones and other soft tissues. Then moving becomes even harder, and soreness worse when you do move (since the pain is kind of amplified in an FMS patient's brain). This vicious cycle continues, and for some, becomes a road to disability.
So one of the study's premises is to keep your flexibility and mobility through exercise - every day, no matter how much it hurts. So I end up stretching/strengthening my various body parts for about 30 minutes every day, going through breathing exercises to relax all my muscles, and doing an aerobics exercise for 20-30 minutes every day (started from 6 minutes/day), hopefully to increase over time. Theoretically, certain exercises help us produce more endorphins, so we may hurt less in the future. It doesn't sound like much, but when your body feels like you've just ran a marathon on all fours while having a bad flu, it becomes an epic journey.
I guess sometimes the best thing you can do is to put one foot in front of the other, and hope that leads to a better place. :-)
P.S. A bonus: I must become really, really healthy at the end of this, even if it hurts! Yay!
P.P.S. (Post June 21) Now that Lyrica (see my post on June 25) from Pfizer has been approved by FDA for fibromyalgia treatment, I bet we'll see ads popping up, asking us: "Can you have fibromyalgia?"
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