Do you ever have times when you're not sure which is worse, your illness or the meds with which you are treating your illness? My facial pain is a screamer: if I take enough meds(which are never enuf!), I'm so sedated I'm in a white cave with the walls closing in(unless I fall asleep, which rarely happens). If I dial down the meds, I can't function in a meaningful way because the pain cuts right thru me! Guess I've had better days, my friends! Al

Al, I've had days,weeks and even months like that unfortunately. Today isn't a good day for me either,I have a serious headache...stiff neck...backache (triggered by falling down the steps)....and achy legs despite the meds. I also have severe reactions to many medications and combinations and I can't take anything narcotic. I'm taking Flexaril at night and Ultram during the day. With a little Celexa on the side....

I always wondered who used those "granny" style medicine minders (gosh,can you imagine the poor people who have so many pills they can't keep track???) and now I'm sitting here looking at a HUGE minder with holders for 4x daily,7x a week. I got it after screwing up several times and doubling my meds/vitamins.

Gotta hang in there and keep fighting Allen, it WILL get better....

Allen,
Sorry to hear you are in so much pain. I will not say that I understand because I have never suffered from MFS myself. As far as the meds go, sometimes they can be overwhelming and sometimes they are just not enough to take away the pain. Since the doctor put me on codine, I am having problems trying to remember to take them on time. It is not like my previous pain meds which wore off gradually. The codine wears off at the snap of a finger. Today I could hardly make it home from the library so I could take my meds and eat something so the meds don't tear up my stomach.

I am so sorry to hear you are in such pain and want you to know we are all here any time you need to talk or vent or whatever.

http://www.healthboards.com/ubb/smile.gif take care

http://www.healthboards.com/ubb/smile.gif Katt

Al, I suspect you'll understand when I say that my head and jaw hurt so bad that I feel like crawling into a dark corner and bashing my head against the wall till I pass out. It's been 2 days of this and I don't have any strong meds, I'm doing Ultram and Tylenol. I've tried the hot baths. Definitely a screamer and I can't sleep when I get these. I don't know that people who don't have FM can really understand how debilitating it can be to feel bad all the time. If it's not one thing, it's another.

guaifenesin anyone?

What is guaifenesin? I have heard of it before but I have no idea what it is.

hi smackliet,
guifenesen is an expectorant and the main ingredient in many cough syrups.

Dr. Devin Starlanyl and another dr. - whose name TOTALLY escapes me at the moment - support the use of guifenesen as treatment for FMS. The protocol is very precise and requires eliminating certain foods as well.

copy and paste the dr's name into a search engine, and you'll pull up lots of info.

------------------
Copper
Let Miracles Replace all Grievances

Just wanted to say how grateful I am for the people before me who have done so much research through their own pain and now are willing to pass along what works for them- truly appreciated you are!!
Valerie-Have you tried that guifensen? What was your experience with it? And where did you get it?
Allen-I hear you. It's a beggar of a place to be. I spent most of the night watching the clock and debating what I could or should try next hour.
Does anyone notice a worsening at or around the full moon? This week has been crazy for me and last night I noticed the apartment really bright from moon so it got me thinking. Course that may just be overworking,underslept brain cells!
Hopefully by today both you and CIOC are feeling better!

Remember guiafenisin is useless if you're taking in nsaids (aspirin, ibuprofin, etc.)
I tried it without stopping the nsaids and got no results other than my ashtma was better because it's an expectorant and helps clear the lungs. I can't get past taking pain meds for the 1-2 months it takes to possibly work. Take Care, John

Hi there. Just a few more words about the guaifenesin treatment. You can take it with some NSAIDS, justnone that contain aspirin, so you can still take ibuprofen, tylenol, vioxx, celebrex, etc. and your other meds. You don't have to watch what you eat. But you do have to be careful of what you take as supplements and put on your skin -- hair products, skin products, etc. The reason for avoiding aspirin compounds, some supplements and some skin/hair/etc. products is that they contain salicylates, and salicylates block the effectiveness of guai for treating FM. It is a VERY effective treatment, from what I have been able to discern. My 14 yo daughter is on the guai protocol as am I now (having figured out I have this DD, too, after reading so much about it). I haven't had any major disability from FM, but sure have the symptoms. It stops the FM progression and reverses it -- back to health. I read posts on another listserv I belong to for people on the guai protocol, and there is someone posting nearly every day to give a 1-yr, 2-yr, etc. update. Those posts are incredible. People who literally had to crawl to the bathroom, etc. are now up and around and back at work. This treatment is not snake oil and no-one is getting rich from it, because the drug has been around for years and years, there's no patent on it anymore, and it's cheap, cheap, cheap! You can get it long-acting by prescription or over-the-counter at lower doses. But it's not something you should just start popping without learning all about how to do it. There are salicylates in all kinds of weird things you'd never expect and the guai will only thin your mucus (ok if you have a cold...lol) if you don't stay away from them. There are other complications, too. But there is a book out now that describes the protocol and websites dedicated to helping people who are giving it a try. Dr. Paul St. Amand is the doctor at UCLA who has developed it.

HOPE!

Val