November 20, 2004

• Ouch, moneyjane. I know otherswith this. You may snark at me all you want if it helps and I won't mind. *grins masochistically*
• uh... have you talked to your doctor about this? also, they have awesome weed in BC. you should hook up with some of that.
• my bro takes guai for that. and weed. lots of weed.
• I was diagnosed about six years ago by a very smart rhumetologist. I was sleeping twenty hours a day, and I felt like I was always walking on knives. I've taken anti-depressants off and on, but not for the last few years, and I've been mostly in remission. As someone who just realized that she's in another flare-up (due to the stress of a spouse deployed in the middle east and a rather rigorous school/work schedule), I have to say that I know what you're talking about. A few things that I've never seen in books or support websites that always work for me (you may already be doing some or all of these): 1) Work out between 4pm and 8pm. Your body starts making serotonin at four, and if you're on a normal sleep schedule, working out any later than eight may keep you awake or keep you from getting to that level of sleep that you so rarely get with FMS. This is especially helpful if you're having those awful 2am wakings when your body stops making serotonin and starts feeling the pain that was there all along. You *must* start very slowly, even twenty minutes at a time, or your fatigue will overwhelm you and you will stop going to the gym. 2) Cut back on refined sugars and anything made from bleached white flour. I have never been good at this, because my body craves the little boost in pain relief and energy from this stuff. 3) Try to remain active, even when it's really, really painful. They call the downward spiral from inactivity deconditioning, and it happens very quickly. Those three things will usually get me out of a flare-up. But if all else fails, don't be afraid to go on the meds. There have been several studies that state that those medications and exercise are the only therapies that work. I have managed to find the fine balance that keeps me out of the flare-up and will get me out of one if need be, but it's really tough. On preview: I've never tried the guaifenesin protocol, but some people swear by it. I am just not dedicated enough to weed out all the plant stuff I put on my body to make it work (if it does at all. It's never been proven to have any effect).
• they have awesome weed in BC lots of weed I am just not dedicated enough to weed out all the plant stuff I put on my body to make it work Now I'm getting confused. Is it 'weed in' or 'weed out' that one does? Can one learn karate while doing it?
• I had it's kissin' cousin, Chronic Fatigue Syndrome for about 4-5 years. Went to a bunch of docs and was finally successfully treated by a accupunturist (who has since gone on to be an "accupunture gruru"). Felt like hammered bat shit for the better part of five years so I get what you are going through.
• Good grief. I was just complaining this morning that I felt a leprechaun had snuck into my room last night and beat me all over with a big thick stick. It's not actual pain (thank goodness), but a deep aching all over as if I've pulled every single muscle and joint too much. And it happens too often for my liking. Never heard of this before. wow. Thanks moneyjane; hope you feel better soon.
• A good friend of mine had (and still on occasion has) the same problem. Elsbet is pretty much right on about all 3 points: exercise in the late afternoons, no closer than 5 hours before you go to sleep, cut out sugars (my friend didn't cut out flour, but refined sugars for sure), and stay active and moving as much as you can tolerate. Another thing that seemed to work for my friend was drink a fairly large amount of water first thing every morning, like 2 big glasses. All of this is purely anecdotal from my friend, and I don't know much about Guaifenesin, but regular exercise, plenty of water, and healthy eating helped my friend greatly.
• Some people are also fanatic about eliminating all preservatives and chemicals from their food. I've heard people blame aspertame for all cases of fibromyalgia. YMMV. I've never noticed an effect after eliminating them from my diet. And dxlifer, to sum up: plants are good inside, bad outside. So smoking weed is good.
• Wow guys! That is some awesome info and advice - and dxlifer, you are very brave! Elsbet - I know exactly what you mean re: Cut back on refined sugars and anything made from bleached white flour. I have never been good at this, because my body craves the little boost in pain relief and energy from this stuff, as I am sucking back a Coke right this minute in an effort to get my hands awake enough to stop knocking crap over, and also so maybe I can stop walking like an 80-year-old with a oboe wedged up my ass. I'd never heard of the guaifenesin protocol, and am going to check it out. Basically, Wellbutrin keeps it under control, but I couldn't get my prescription filled this month, and two weeks later, I'm really beginning to feel it. I'd forgotten how much help it really is. And as for weed...arrrgh! I'm like the only person in this entire province who has such a bad reaction to THC that I can't smoke the best weed on earth. Also, I'm giggling as I imagine someone industriously hammering bat shit into dust, packaging it neatly, and labeling it, "World's Finest Bat Shit, Hammered With Care By Old World Craftsmen".
• Another Chronic Fatiguer here, for about 15-odd years. Agree with all advice from Elsbet, although in my experience, pushing yourself too hard to exercise can sometimes lead to unexpectedly and absurdly long recovery times. CFS and related syndromes can apparently quite often inhibit the body from absorbing nutrients, and the thing that eventually turned it around for me was doing a proper multi-pint bloodtest and realising that I was missing a ton of vital things, such as magnesium, zinc, amino acids, calcium, most vitamins I'd ever heard of and some that I hadn't, and so on, and I started taking supplements. Lots and lots of supplements. About 80 pills a day at the peak. But it eventually did the trick. If you can get your doctor to do a full blood test I would really recommend it, just to make sure that you are as equipped to fight off the illness as you can be. Some of my myalgic pain was alleviated by very low doses of Anafranil (Clomipramine), but that was the only 'proper' drug that I tried. So sorry you're going thru this moneyjane and Elsbet, it's the pits. Feel better soon. (my email's in the profile if you ever want to vent at someone who honestly won't get bored by hearing how shit you're feeling - I remember being absurdly happy the first time I met someone else who had it, and could actually talk about it without feeling like a malingerer or a loony.)
• I've learned that I have to pay attention to my body - and for somebody so used to living in their head, as I imagine a lot of monkeys are - it was a little humbling. My brain no longer steers the good ship Moneyjane and there is NO productive arguing. It also doesn't help that I'm a bit of a langourous larva - I spend a lot of time trying to figure out if I'm really listening to my body, or just being a lazy twat.
• I have different chronic illnesses - interstitial cystitis and undiagnosed irritable bowel syndrome - so I'm going to give some generalized advice only. You probably know this, but stress is a huge factor. Don't get stressed out. Easier said than done, but it's my biggest trigger. It activates my bladder, which is obviously specific to my condition, but it also causes all the secondary reactions - burning pain, nausea, tiredness, etc. And I find that dealing with chronic pain illness, if one part gets set off, it can put you into a more generalized flare, which is hell to get out of. So trying to stay flare-free is key, and a good way is to keep stress levels down. Other than that, nutrition, exercise, all that was said above. Someone to snark on is good, too. Sometimes the best way to deal is to suck it up and just get on with things; other times, you really do need to let it all out and whine and bitch for a while. Don't be afraid to do either. Good luck!
• Argh, I have no idea why there's that big space there. Preview! It's my friend! Argh.
• I hardly know ye
• Hee!
• As a student of chinese medicine I've got to say...get into an acupuncturist. The NIH recognizes the efficacy of acupuncture for treating FMS, and I definitely suggest you give it a try. If you have any questions about finding a good practitioner, feel free to emali me (address is in my profile.)
• I read an eloquent and thought-provoking personal account recently of someone who discovered in her thirties that she had fibromyalgia. I hope it helps, moneyjane. The link to the second section is at the bottom of the page.
• Thank you clockzero - Wow, that woman got nailed by it! My case is not as nearly as ferocious as hers, and is usually well-contained by Wellbutrin, but if I had been an athlete as she is, it would have been much more distressing. I find that for me it's mostly a preview of what it's going to be like to lose mobility and be plagued with chronic aches and pains when I'm an elderly old siren. I was always a door-holder-opener for the oldsters - now I'm just more so with the personal experience of the irascibleness and botheration it brings. It'll be interesting to see further definition and wider awareness of the many ill-understood chronic illnesses that have been brought up in this thread. We're a bit stuck in the dark at present.
• Mothninja is totally right about overdoing it with the exercise. So I'll say it again , take it very slowly at first. But the key is to do something, even when you feel terrible. The Guaifenesin Protocol has always seemed a little odd to me. I don't understand how a cough medicine works on a thing like FMS.
• I would second the suggestion to cut out aspartame, if you ever ingest it. Although I don't have fibromyalgia or CFS, I do have irritable bowel. Anything with aspartame in it really makes this flare up, and it also gives me really bad kidney infections. I'd like to meet the guy who invented this stuff and kick him in the shins :)
• ... and now you know way too much about my internal organs. :)
• Not only am I dealing with fibromyalgia, but I'm dealing with ankylosing spondylitis & associated arthritis, too. It took me 2 years to get a fucking doctor to listen to me. Specialists have shuffled me around like a goddam testing ground for pharmaceutical fringe benefits without ever listening to a god damn word I've said. Finally I found the best treatment came from a GP. Constant fucking pain makes me want to blow my brains out with a shotgun, sometimes. So I hear where you're coming from.
• My mother and all my aunts on my maternal side have fibromyalgia, and I'm worried I'm developing symptoms. My family has such a freaking history of autoimmune disorders it's a wonder we're alive at all.
• You may not be doomed - my mom, maternal aunts, and maternal grandmother all got endometriosis; all of them had hysterectomies by age 30. But it totally skipped me. YAY!
• ankylosing spondylitis Man. That sounds godawful. Y'know...that might be what my mom had - all I remember is her back killing her for years, her eventually getting surgery to fuse 3 or 4 vertebra in her back, and her taking aspirin every day for what she just called arthritis.
• You know, all the women in my family had hysterectomies by 35 (7 women total) due to rampant endometriosis. Quite the coincidence. It looks like I might have a bit of it myself as well. My uterus is tipped all the way over to the left. Sitting on the fallopian tube and ovary, I suspect. My last "scoot down a little more, dear," appointment was not at all pleasant. And now you all know way too much about my internal organs. You're welcome.
• Apparently NADH can have positive effects on fibromyalgia, CFS and related nasties - I only heard about it today, and from a very cursory hunt round the interwebnet it seems like much more research needs to be done, but it may be worth investigating.
• To those that suffer, I hear you. I'm lucky, my fibro has been in remission for years now, but I do remember the days. Hopes for all of you to find what works and that you can kick this nasty thing in the butt. Monkeyfilter: now you all know way too much about my internal organs. You're welcome. Tee hee Thanks, Elsbet: If ya' can't laugh at it, ya' can't beat it. Guaif is considered an expectorant, not a cough syrup. This from rxlist: Guaifenesin is readily absorbed from the GI tract and is rapidly metabolized and excreted in the urine. The major urinary metabolite is b-(2-methoxyphenoxy) lactic acid. IANAC, but I'm wondering if the effects have something to do with drying out the lymph glands and excreting lactic acid. I do know that excess lactic acid make you sore, and that exercise, while it does generate some LA, will also aid the body in ridding itself of it. Just a guess from a clueless monkey. Oh, and have a 'nanar, they are good for you, and my doc said to eat them daily.