I owe some folks here an apology. I had forgotten something important about being a member of the huge web community that now exists, but comments and e-mails received in response to my post about the fibro medication gave me a much needed reality check.
I’ve always lived a rather quiet, private life, which is probably a rather strange thing to say for someone who has been blogging for as long as I have. I do reveal a lot of myself when blogging, and continue to open up more and more, the longer I stay at it. But what I haven’t quite wrapped my head around yet is the fact that some of the things I write have an actual impact on people who read my words. I also sometimes forget that anyone, anywhere, can find my words, and that my readership is much larger than I realize. I know who comments regularly, but they’re the minority in my readership. I tend to lurk more than I comment, too, just because I’m naturally quite shy, so I don’t have a problem at all with most of my readers being lurkers. But when some come out of the woodwork, to let me know that my words matter to them, I realize that I have a responsibility to others and really need to watch what I say about certain topics.
I’ve never considered myself a “poster child” for anything, but apparently my openly discussing having CFS and Fibromyalgia has made me one in certain eyes. Which, I suppose, I should have realized, knowing how much scouring of the ‘net I’ve done since receiving the diagnoses, searching for anything and everything that I can learn about the illnesses, including testimonials that give me real hope for a cure or a symptom-free life. So, unbeknownst to me, fellow sufferers have found my site in their travels, and have been following my journey closely.
Thus, I apologize for disheartening anyone with my post about the fibro medication not working out for me. And I also apologize for not going into more detail about the treatment. I’m just vague about such things because most of my known readers aren’t sufferers of either ailment, and I don’t want to bore them rigid with info about stuff that doesn’t matter to them. It’s also a case of not wanting to burden others with my problems – a trait I’ve held all my life. Just talking about either illness at all here sometimes makes me squirm inwardly, lest I appear to be a humongous whiner. Neither illness is pleasant, but there are far worse things and I always feel like I don’t really have the right to moan all that much about my lot in life.
The situation has changed somewhat since I wrote that post, and I’m back on the fibro medication. It was partly my own decision, after the fibro symptoms came back full force after the medication cleared my system. Forget what I said about side effects being worse than pain, that “special” kind of fibro exhaustion, and mega brain fog. I lied! But I also had a chat with the prescribing doctor today, who is always available by phone, bless his little cotton socks. His opinion is that something else was going on at the time, which I now see, too, and I was blaming the medication for things that it wasn’t doing. For one thing, I had felt so much better on it that I kind of forgot that I also have CFS. Which had been in a sort of remission for a few weeks, but of course remissions don’t last forever. So, it came roaring back into life, at the same time as my hormones decided to give me a rougher than usual time, and that’s what probably sent me into a tailspin. Ah. So, like I said, treatment has resumed, and we’ll call it a miracle drug once again. Or at least I will tomorrow. 😉
As for the identity of the mystery miracle drug, it’s just Amitriptyline, one of the old school anti-depressants. It’s rarely prescribed as an actual anti-depressant now, since the SSRI family work much better for most, with fewer side effects. But somewhere along the line someone realized that Amitriptyline has a remarkable “off label” effect on fibromyalgia. Not for everyone, of course, but for many. Not only does it work well on the pain factor, but it also sorts out the sleep problem that comes with fibro. As in not going into the deep, refreshing stage of sleep. Our eyes are shut for several hours at a time, and we appear to be sleeping normally. But we’re actually drifting in sort of a halfway state between sleep and wakefulness. It’s the sleep bit that seems to be the really crucial thing to sort out with fibro. As the doctor said, and as I’ve heard from many fellow sufferers, once you start having normal sleep over a period of time, everything else gradually improves, too. If you’re already on an SSRI anti-depressant, as I and many other fibro people are, it boosts the effect of the Amitriptyline even further. I’m on the lowest dose available, and after a week the pain was pretty much gone, and the brain fog had lifted tremendously. So, yes, it does work, and I’d encourage anyone who hasn’t already tried it to do so. But just don’t make the mistake that I did if you have other conditions, too, and expect it to be a miracle cure for everything. If you only have fibro, it might just give you your life back. If you have fibro and CFS, it might make you feel a lot better some of the time, and that’s something to be grateful for, yes?
So, there’s the story, properly this time, and thanks again to those of you who gave me the reality check!