Thursday, January 17, 2008

Rio: We're All a Little Different

One of the most challenging things about my fibromyalgia is my response to a variety of drugs. Everyone has little physiological differences, and fibro sufferers even more so, but I have a particularly odd system, which has made treatment of my symptoms quite challenging. Doubly frustrating is the barrage of "advice" I get from people who have had this or that drug work for them, especially when they get upset at me for not being the same as they are.

The first awareness of my abnormal drug reactions came after I received a pain medicine prescription, probably for one of my surgeries. Lortab, which is hydrocodone with acetominophen, did not make me drowsy--it did the opposite. It sped me up, made me wide awake and hyper. This was before I developed FMS, so it made me absolutely manic. These days, it just brings me up to "normal". It is also very effective for my pain, which I'm told is not usually the case for FMS pain.

I've had allergies for a number of years. I took Claritin for a while, then switched off with Zyrtec when the Claritin wasn't working. I'd heard about Benadryl making people drowsy, so I avoided it. Eventually, though, I was broke, and I needed something that would actually work for my symptoms. I took some Benadryl, and found that, while it treats my allergy symptoms, it does not affect my wakefulness at all. Many people tell me that they are knocked out by half a tablet. I can take two,
with zero drowsiness. Fortunately, it does not speed me up like hydrocodone does!

My previous doctor had me try muscle relaxers to help manage some of my fibro symptoms, and to help me get better sleep. After taking them religiously according to the directions, I finally went in to the doctor's office and asked him what exactly they were supposed to DO. He asked me what I meant. I told him that I take them, but my muscles don't loosen up, and I don't get at all tired. He tried me on a different one, with the same results. We gave up that tactic entirely. I still don't know what you're supposed to feel after taking one of them, but everyone tells me that they fall deeply asleep.

Another supposed miracle drug for FMS sufferers is Ultracet. That's another one I took religiously, with no effect whatsoever. Again I asked what exactly it was supposed to do, and my doctor concluded that it just didn't work for me. It's one that I really wish people would stop telling me to try. I've tried it. It doesn't work for me. Being angry at me for this isn't going to make it work for me. I'm glad that
it does help other people, but I'm not so lucky.

FMS sufferers get a great deal of unsolicited advice. I'm glad that other people care about our well-being, but please remember that what works for one person does not work for everyone. I know that some people are helped by yoga, while I know others for whom yoga would make symptoms worse. It's part of the frustration we face with our doctors, with each patient needing individualized management plans. Believe me, we really do want to get better, or to try to live as normally as possible--it's just that finding the best plan for us may take years of trial and error before we come up with one, if we ever do.

What we need from those around us is patience and kindness. We're sick of being sick, and rather than suggesting what drugs to take, could you maybe talk to us about another subject, say, the weather, or what books you've read lately? We're people, too, with interests outside our illness, and it would be nice if we could focus on something else for a change!

Rio also blogs at She Dances on the Sand.

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