Watch What You Say

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!


12 thoughts on “Watch What You Say

  1. Until I have insurance again I can't have the testing done to confirm my doctor's suspicions of CFS, fibromyalgia and rheumatoid arthritis along with my osteoarthritis. I do have the majority of the symptoms but mine are in a kind of mini-remission stage right now, praise the Lord. Mine will almost certainly worsen again with cold weather if not before.I hope you get good results from starting your amitriptyline again. Anything that helps…Love and hugs,Diane

  2. Do you have a post about when you first got this and recognized the symptoms? I'm one of those in the dark about it…Just send me the link to the post if you like, or tell me to mind my own ;)I'm always interested in every aspect of my friends lives…call me a “nosey rose” if you will!

  3. I sure hope that you get your medical insurance straightened out soon, Diane. The predicament that you're in just isn't right. Nobody in such a wealthy country should have to go without medical care.I must have had you on my mind when I went to sleep the other night 'cause “Dubya” showed up in my dreams and I tore a strip off him a mile wide about the health care policies in your country. I ripped into him about a few other things, too, while I was at it. He paid attention in the dream, but somehow I don't think that it will translate to policy changes in real life. Oh well, I tried. ;)The amitriptyline is doing its thing quite nicely, thanks. It takes a week or two for it to really kick in properly, but everything's improving already. Live and learn, eh?!

  4. Good golly, Tammy, I don't think you're nosy at all! I really like it when people are curious and ask questions. How else do we learn about people and unfamiliar subjects?! So, fire away in future – my life's an open book. :)I actually haven't ever done the kind of post you asked about. The CFS came on suddenly in December of 2004, but it took ages for anyone to figure out what it was. By the time it was figured out, I had talked about it so much already that I didn't bother saying much about the diagnosis. As for the fibro, it turns out that I've probably had that for a very long time, but it was mild enough that I could pass it off as nothing important. However, for whatever reason, it suddenly started to be really noticeable last fall, and has been kicking even harder since spring.I'm a bit too brain dead to tackle the subject properly today, but I will do a detailed post about all of this soon. Thanks for taking an interest! 🙂

  5. Is there any coffee left over??? lol Sheesh, you open up a new place and I'm late visiting!! Between traveling, the garden and having company, it's cut my blogging time short…boo hiss!! I think it's GREAT that you now have your very own domain and I love it that you've returned to using Tame the Shrew:-)It's so true that we don't realize how many people we affect by what we write about. Our blogs are ours to write what we please BUT as you say, we also have a responsibility to others. Glad to hear the meds are helping…you take good care of YOU my friend!! xoxox

  6. Just to let you know I have bookmarked this new site of yours as one of my faves, not sure if this is the right place to tell you this Eleanor?(big apologies if not) but not sure where else, and it IS almost midnight so can I be forgiven….zzzzz! Hugs to you all, Kazzie x

  7. Hey, Carole, my coffee maker does its thing quickly, so some fresh stuff will be ready in a jiffy. 🙂 I know that you've been busy, so don't fret about not getting over here for a few days. I'm sure you know by now that I'm not the attention-seeking or sulky sort. Whenever you can, and whenever you feel like it, are just fine with me. And yup, Tame the Shrew is feeling mighty good again. I don't know what got into me for a while there, but “emo Eleanor” has left the building. It's my sense of humour that keeps me going, and I just can't do mainly serious or sentimental blogging without getting downright depressed. Lesson learned!!

  8. Thanks for following me over here, Kaz! And yup, this is exactly the right way to let me know that you're here. :)By the way, while I have your attention, and the memory is somewhat functional, I have to tell you that I have a major bone to pick with you. Majorly major bone, actually. Remember telling me about your addiction to Lush bath products quite a while ago? Well, a shop opened here last year and guess who is now a HUGE Lush addict. Well, yes, Stephanie is, too, but I'm the one who got her hooked after getting hooked myself … and all because you made me do it!!! Proud of yourself?! 🙂 But all pretend admonishments aside, the bank account might cry whenever one of us goes in there, but my skin will be forever grateful to you for mentioning Lush. I've always had sensitive skin and had to be so careful about “smellies”, to the point where I just quit using them. But now I can indulge my girliness to my heart's content, and the more I indulge, the better my skin gets. So, what I spend on Lush stuff, I save on heavy duty moisturizing lotions and such. Or at least that's how I rationalize it. ;)Love to you and all of your guys …and to that gorgeous grandchild of yours, too!

  9. Hello! I've come on-line to catch up with my blogs to find that you've a new blog home :)Glad to hear you're giving the Amitriptyline a second chance. I'm actually already on that drug and have been for several years now. I'm struggling with some of the side effects so I'm back on the low dosage that doesn't maintain my sleep pattern quite so well. Still we need to keep pegging away at these things. It's certainly better than without them!

  10. Glad you found your way over here, Elle. You're one of the ones who has followed me all over the web, and I thank you for your perseverence! This is definitely home now, though, and if I had a stone tablet handy, I'd carve that statement into it.:)I sort of figured that you had probably already tried Amitriptyline, since you've been dealing with fibro for a long time now. I'm so glad that I gave it another chance, too! After a few weeks of not feeling so miserable, it wasn't nice when the symptoms came back full throttle. Now they're easing up again, so lesson learned. A good night's sleep makes all the difference in the world, and being less achy is rather nice, too. My left arm and hand still protest loudly, but I'm left-handed, so that's par for the course. Hopefully they'll calm down after a bit more time back on the drug.What are the worst Amitriptyline side effects for you, if you don't mind me asking? The drowsiness isn't there for me with the restart, but I'm still getting nausea, even when I take it with food. Small price to pay, though. I could do without the weight gain, too, but oh well. I lost ten pounds in the short time that I was off it, but it's coming back on again. Must be the carbohydrate cravings. I'm not eating more in overall quantity, but I know that my carb intake is up. Meat, dairy, and any other kind of fat are rather repulsive at the moment, hence the filling up on carbs. I went through this with the SSRI anti-depressant, too, and it passed eventually, so hopefully it will with the Amitriptyline, too.

  11. To be honest, Eleanor, it's the anti-cholinergic effects of Amitriptyline that I find most distressing; I seem to become totally dehydrated. My mouth and eyes dry up. My lips are constantly cracked and sore, and my eyes look red and slightly bloodshot. It also makes me extremely constipated in higher doses so I lowered the dose almost immediately that symptom started. I spoke to my doctor about it, in some distress at the time, and he offered to prescribe me a laxative but I felt we were moving into a kill or cure situation.I take the Ami at the smaller dosage now and find that it helps me to sleep even if it doesn't always *maintain* that sleep. I certainly can tell the difference if I don't take it at all. I'm still in pain but it's at a significantly lower level and not as many of the tender points are affected either. I do take quite a pharmacopoeia of other drugs but one that my doctor has got me to try is Baclofen which is a muscle relaxant. I have had some success with that.As for weight..oh dear…I could do with losing about 100lb. The weight has gradually cropped up over the years. Not all drug related; a lot of it is lack of exercise. I do enough to keep the muscles mobile but I'm not a lover of pain and don't really work out the way I ought to.I'm writing a tome here Eleanor. If you'd prefer I wrote to you via email rather than filling up your comment box I'd be quite happy to.

  12. Thanks for all of that, Elle. If you'd rather discuss health stuff by e-mail, that's fine with me, but I don't mind you filling up my comment box, too! 🙂 This fibro diagnosis is still pretty new for me, so any info I can get from a veteran is much appreciated.I think that the main trick for the moment is to distinguish between CFS and fibro symptoms. Some overlap, so it's hard to know exactly which condition is most troublesome at certain times. But there are differences, once a flare of one or the other is well established. Ideally, I'll leanr to distinguish them before symptoms get bad enough to be obviously one or the other!

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