Guaifenesin Success Stories
Revised October 31, 2005

The guaifenesin journey can be a long one. You can have days you feel like you've never had fibro, and then you have days you're convinced it's never left and never will. On the bad days, come to this page. Here are stories of small successes and large victories, gratitude for everyday relief and life-changing miracles.

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After reading the entries below click here and here for more success stories.

Members can also search the archives for "progress reports".

"I'm able to swim and walk 30 mins or more 5x a week."

Greetings and thank you to all the wonderful people who post on this site to share their advice, experience and even the woes. I'm sending this as I close out my 3rd yr on guai. I began taking it July 16, 2002 with the hope that it would help with the horrendous IBS I had been experiencing and which my doc couldn't figure out. I don't know how long I had felt flu-like, taking my temp only to find I had no fever in spite of the aches and pains. And oh, the terrible fatigue, never better because I would wake after sleeping only 4 hrs. After reading Dr Amand's book and with my doc's ok I began taking guai LA 600 mg and soon found myself experiencing the cycles of actually feeling better with really feeling awful. I had two bouts of terrible muscle spasms in my back which lasted for weeks and which weren't remedied by any of my marvelous medical team's efforts (acupuncture, MT, meds, TENS unit, chiro or lidocaine injections which worked on the 1st one, but not on #2). After the first few months my sleep became better and by 18 months or so I was sleeping 7 hrs a night. About 7 mos. ago my doc put me on 25 mg of Amitriptylene which provides 8-9 hrs a night now. I'm able to swim and walk 30 mins or more 5x a week. I've been working 2 days a wk in my dentist's office. My mind is clearer in the past few weeks and that's REALLY exciting. I still have stiffness in my upper body, but the pain is gone. I don't think my doc is convinced that guai is what has made me better-he's a believer in exercise to the best of ability-says his fms patients who swim get better and those that don't don't. I see my chiro 3-4 times a year and my MT every 2 wks. My MT says last time she was even using her elbow on some of my rock hard muscles and I wasn't feeling terrible pain, a vast improvement as in the beginning I could hardly stand to have her work on some areas of my back. This has not been a piece of cake, but in my opinion I believe the guai protocol has improved my life 1000%. I plan to stay on it, even if it has to be Mucinex (ugh!

!) I do want to say thank you to everyone who has posted as you have all helped me in some way (special thanx to Karen M, Tesa and Wendy) and I pray that you all improve daily on the way back to health. I love you all.
Dolores Tully in Chicago

"Had I given up after a year, I would never have known the benefits."

Hi Guais! Good grief I can't believe I've been on guai five years! It would have totally escaped me if one of my buddies hadn't brought it to my attention! (thanks Betty!) I was looking back through some of my old posts and realized how greatly I've improved. My biggest problem these days is energy. But, pain is nothing I can't control, which was a huge problem for me. One thing I noticed in an old post is that I'd said I didn't think I was having any problems with Fosamax, for osteopenia. However, having gone off it, I've found I have soooo much less pain. I encourage everyone to continually evaluate any and all drugs that have body or muscular aches as a side effect. I fear I could have saved myself years with less pain, plus my cycles, which previously were not apparent, are much more so now. Basically, my biggest problem currently is a foggy lethargy, which really hampers my ability to think at times, but I can deal with that, too, with the help of friends! (Thanks TK!) Summer heat is maddening, but winter's chill is worse. I operate much better in the summer. In fact, I found the more I sweat the better I feel and sleep. But, I HATE to sweat! LOL! I still need regular chiro and massage therapy care and I still take a gazillion drugs and supplements, but I am greatly improved. If FM is a progressive illness as has been theorized, I know I could likely be bedridden today, given where I was when I started. I encourage all newbies to stick with gaui for at least a year to give it a chance. Had I given up after a year, I would never have known the benefits. In fact, I got much worse before I began to get better. And believe me there have been times when I wanted to flush the guai!! Most of my 4th year was pure hell. Sorry, but that's exactly what it was. I wondered why in the world I was punishing myself. And, then I talk to people, or my doc tells me about people, who don't take guai and can't function and live with constant pain. And, then there are those who function quite normally with nothing at all. I have to wonder if they really have FM. I think many of us on guai came to the protocol becuz we were REALLY sick and probably had no where else to go. So, that's the long and short of it. I may be ready to flush the stuff again next month, but I'm really hoping I'm over the worst of it. We'll see! Love, Karyn from WV, 55yo, 1200 mg/day, FMS/CFS, guai since 7/00, liberal hg diet, Guai Support Buddy: http://www.psha-inc.com/guai-support/sf/BuddyHelp.htm

Karyn (Buddy) from WV.
Age: 55
July 5, 2005

“I had reached the end of the line…”

I was an absolute "basket case" when I found Robyn Scott through an online guaifenesin support group.  She and I connected pretty quickly since both of us were miserable, in pain and trying to cope. Robyn became my Guai Buddy right away.  She and I got to the point of instant messaging a few times because I was so desperate and despondent due to intense pain and she was very worried about me.

Robyn was encouraging me to go on guaifenesin but I wasn’t ready.   Instead, I was searching high and low for a different diagnosis.  Anything (other than FMS) to label what was wrong and then hurry up and cure it.  Curing it, of course, was not to be.  I finally got the diagnosis; FMS, osteoarthritis, fatigue and…depression.  Of course I was depressed!!  Who wouldn't be.

After my diagnosis I plunged into the world of alternative medicine and spent tons of money and time and energy and got no lasting relief.  My depression deepened but still I refused to try guaifenesin.  My pain was so bad that I could not sit up for any longer than 5 minutes at a time.  I lost 25 lbs. in just a few months because the pain took away my appetite completely.  My list of symptoms was monumental. I really felt like I would die very soon.

That is when I reached the end of the line --- and tried guaifenesin.  There was nothing else to try or to lose.  It simply could get no worse.  The only place to go was up.  At that time, there was much controversy over brands and types of guai.  Everything was being debated and I couldn't make sense of it all.  I knew Robyn was doing well on GuaiLife so I ordered 200 mg tablets and began the journey.

I am a lucky, fast responder.  I started the guai in early July of 2002 and, by mid September, 80% of my pain was gone. I don't really know to this day if I am taking the correct amount. I do not recall cycling. Literally, I went from pain to very little pain almost overnight.

Now, a year and a half later, I still have bad times, usually 1 day or a few hours here and there, and I am frequently tired.  I still can fall asleep at the movies, in the car while my husband is talking to me, and other inconvenient places.  Compared to before, however, this is HEAVEN.

I love you Robyn for talking to me over and over and having patience with my anti-guai. period.  Thanks for all of your support that year.  I only found GuaiLife because of you.

Cindy in Atlanta
Age: 45
February 16, 2004

"Now my good stretches are so long I'm losing track of when I last crashed. I'm on a 28-day stretch now and still counting!!!!!!!!"

Dear friends,
I find it hard to believe that I am two weeks away from a year on guai. I'll give you a brief (?) rundown on my progress.
I am 45 years old, the mother of five children ages 16-6. A year ago today I was having the mother of all pain attacks and begging God to let me die in my bed. I had been sick nearly eleven years. My life was defined by all the activities I could not do. The things I could do safely without inflicting pain, I could count on one hand: think, walk a block or two, breathe, feed myself (most of the time)...that was about it. I couldn't lie in bed or sit on rump without pain; I couldn't drive, watch movies, or even bathe and groom myself. My only respite was from water therapy/exercise, but I needed help getting into and out of my bathing suit, washing hair, driven to the Y...I was 95% disabled. I had eliminated everything I possibly could from my life, short of leaving my family and moving into a padded cell--and still the pain kept increasing. The words I used to describe my outlook on the next 40-50 years of my life were despair, dread, horror, desperation. I often begged God to take me home.

Though I had heard of the guai treatment four years previously, and had read on the Net about it, I mistakenly deduced that it didn't apply to my situation. I got the impression that my muscles should have felt hard-as-bone if there were calcium phosphate deposits. I didn't understand calcium can be in solution. Then a friend who had gotten her life back with guai lent me The Book, and as soon as I read it, and cleared up my mistaken presumptions, I got a supply of guai and started on 8-29-02.

I know if I hadn't been on this list I would have given it up in despair. I would never have questioned the brands I was given, or the protocol. Nor would I have been able to identify my cycling symptoms for what they were without sharing with others their similar experiences. But thanks to all your advice, I waded through months of bumbling and finally figured out what brand and dose works for me. I am taking 400mg/day of Ethex. I have a two-year supply in the freezer, again thanks to your help.

I didn't really start progressing noticeably until after six months, when I realized 600mg dose was perhaps too high for me. I felt like my body was in a vise--squeezed and pressed down from every direction. I didn't know it was cycling. I went down gradually to 500mg, then to 400mg, and after a week at 400mg it felt like my body took a big, long sigh, AAAAAHHHHHHH! and relaxed. I have been gauging my progress since then by how many "good days" I have between "crashes"--days I spent in bed overwhelmed with pain and fatigue. At first I got only one good day at a time; then I went to two days; then it was 4 1/2 days between crashes, for a month or so. Then it was suddenly seven days between crashes. Now my good stretches are so long I'm losing track of when I last crashed. I'm on a 28-day stretch now and still counting!!!!!!!! It's been five years since I was this good. I guess that means my reversal is right on schedule.

My main challenge now is to get a good night's sleep. I lie awake a couple hours because I'm so wound up and high on feeling good, I can't wind down. Flexeril is still a life-saver for getting the sleep I need. If I get 8 good hours, and don't get up before 8am, I'm good to go for a full day.

I'm counting my blessings: I have been watching "I Love Lucy" videos with my family, laughing like I haven't allowed myself to for years, and I'm not hurting!!!! I spend as much time as I want at the computer without much pain; I sit on my bum for as long as I want :-). A few weeks ago I SANG IN PUBLIC with my family (just a short twenty-minute performance at church) for the first time in years. I can't believe what a change has occurred. Yesterday I was on my feet cooking in the kitchen for maybe two hours!!!!

I still can't go to Sunday morning church service (too early, too much) or drive regularly yet. I can't weed the whole garden in one day (we have an acre, and two small veggie gardens) but I can pull weeds for maybe 30 minutes (big improvement), and I have good reason to hope that the second half of my years on earth will be productive and joyful.

You folks know more than any other group, what it means to "get one's life back", and that's what is happening. Guaifenesin works!!!

As an aside, I want to say that I did not detect any "lumps" in my muscles until perhaps seven months after starting, when I dropped to my right dose of 400mg. Evidently, as one kind soul pointed out, my muscles were so tight from end to end, they were "one big lump". I still don't have lumps in my left thigh; the lumps I first felt were in my right upper arm, I think in the triceps. They are shrinking. I haven't had more than two mappings by a doctor, because she is 45-minute's drive away, and most of the time the ride was too hard for me to endure. I should probably see her now that I can ride for longer periods.

If I were to give advice to modify St. A's protocol, I would suggest the STARTING DOSE SHOULD BE 300mg--especially for people like myself who tend to be low dosers with their other meds, and/or are slight of frame. I might have been spared five months of struggle and confusion if I had started lower in the first place. It took a long time to sink in that I might be too high with the starting dose.

I look forward to the future again!! My family is almost as delighted as I am. Some day I'll go grocery shopping--and fill my own cart--and bag it--and drive it home--and unload all the groceries myself!! WOW what a novel thought. The possibilities are endless. THANK YOU LORD.

Arden in OR
August 12, 2003

"I am better. In fact, I am 90% better, having been on this protocol since 2/14/97."
I am able to do whatever I want whenever I want. That's a good feeling for someone that didn't have enough energy to maintain friendships, a house, family and was having some difficulty with working full time. I work an emotionally stressful job as a PA in the health care field. It was getting so that I would look at my schedule and wonder how I would get through the day. My thought processes were getting slower and slower. I even talked slower than I do today. I am able to now, because of gaui, work the fulltime schedule I maintain, take my very busy and athletic daughter to various sports activities (sometimes at a moments notice) such as a tournament of some sort between 350 -700 miles away, doing all or most of the driving myself. I have 2 horses that I ride 3 times a week. I walk my dog 4-5 miles a day at 5:15 in the morning before I go to work at 9:00 am. I take
call at work for 10 days straight, carrying a pager with me where ever I go.  (That means sometimes answering calls during the middle of the night as did happen last night.) I don't ache, unless I block, and pretty much, my fatigue is a thing of the past, unless I cheat on the HG diet. I wouldn't trade this protocol for anything in the world as it is responsible for GIVING me a life!  I haven't missed a dose of guai since I started and I will take it "until death do us part".  Deb Brandt
12 Jun 2000

"I've cleared almost 1/3 of my deposits after 4 months on guai!! "
I had my second mapping yesterday and guess what? I've cleared almost 1/3 of my deposits after 4 months on guai!! And lots of the bigger lumps have broken down into smaller ones, too. The areas I was having the worst problem with, ie shoulders and back, are clearing out first, along with the thigh and inner arm areas. It's the first real indication I've had that
guai works and I'm really psyched about it!! I've been looking at my journal and it's shown me that I have discernable, clear cycles, too. I typically start with a "zit invasion" and a nasty metallic taste in my mouth. I get cracks in my skin, usually behind my right ear oddly enough, about the same time and my mood turns really crabby. Then, I've noticed the pain and fatigue hits a day or so later. But after 4 or 5 days of that, I get a couple of days where I feel almost "normal". And then, bam, another cycle starts. I've been one of the unhappy members of the fast responders club because it seems that I continually cycle on my piddly guai dose of 300 mg bid, but after yesterday's mapping, I think it's well worth it. My husband's little sister came for a visit to Germany to see us two weeks ago and despite my cycling, I've been able to keep up with them
almost the entire time. Only on a couple of days did I opt to stay home while they went on long road trips to the Bavarian Alps and to the concentration camp at Dachau. But the rest of the time, I was able to go on trips to France with them and to various castles and even took an all day train trip throughout central Germany. The only concession I made was to put my exercise routine on hold while she was here since I was getting tons of exercise walking the cobblestone streets viewing cathedrals and castles with them. The only drugs I've been taking is Aleve and Tylenol together for the pain when it's at its worst and Melatonin 3 mg when I can't sleep. To me this is nothing short of miraculous! I'm so appreciative of all you guai'ers who've been praying for me, too. There's still days that I feel like I want to give up on this protocol, but they're becoming fewer in number. All I can say is GUAI WORKS! I know there's miles to go on this protocol before I'll be back to my old self, but I'm encouraged nonetheless and want everyone to know it, too. So let's all hang in there and keep on guai'in! Do I hear an AMEN?! LOL!!!  God bless ALL us Guais, Alice in Germany.
12 Jun 2000

To everyone just starting guai;
to everyone who has stuck with it for a few months; to everyone who thinks that they should feel better than they do.... I know how you feel. It was 6 months before I had a better day. That first six months on guai was worse than the 15 years that preceded it; it was not tolerably worse, it was hell. And I know that some go longer than six months to reach a better place. Sometimes you just gotta reach deep inside to find your strength and your reasons to go on. It is not something that someone else can really help you with. It is the archetypal demon inside that is what you must confront: your doubt and your uncertainty, and your expectations of what should be. This is your mountain, and this is your nemesis. If you quit, you will not get well. It is totally within your power now whether you get well or whether you get worse. And only you can decide what you want to do. Also...you can get well feeling ok mentally about it, or you can get well kicking and struggling against the things your body is doing. There is a certain amount of letting go with this disease; at first, before guai, this disease involves letting go of all the things you love to do, one by one. And that is hard. It is watching things slip away from you, things that you have no control over. This is a grieving process and is very hard. But now...you may still have no control, because your body will cycle in its own way and you can do nothing about that. You still have to learn to let go,and if the years of disease have not taught you that already, you might learn it now. But now you will be getting well, not worse. This is not a grieving process anymore; it is a celebration! You are recovering, and every day, even without you even thinking about it at all, your body is doing what it needs to for you to recover. Do you ever think about the wisdom of this incredible body of yours? I do, a lot. Your body knows what it needs to do. All you have to do is let this happen, and if you can keep a positive attitude at the same time, you will feel better mentally, at least, until your body catches up physically. Who knows? Maybe this acceptance even helps the process; many mind/body philosophies think it does. I think it does, too. Even though I had months of misery, there were always little signs of improvement. If you pay attention, you will notice these little signs. The improvements start small, but grow day by day. I have been on guai now for...18 months....and I can say unequivocally that I am markedly better; I think about 60 % better; if I had not just had a set back due to this *?&# broken arm, I would be inclined to say I have improved more. It has not happened fast, and it has not been through clear cycles; I cycle continuously. But the cycling I have now is not like the beginning of the protocol. I am much, much better. If I never got any better than I am now, I would still have a life and be able to enjoy many many of the things I love to do. In another year, I will probably be recovered completely. That is a long time....30 months...but in the larger scheme of things, it is not too much to have to give to get my life back. This is a gift; it may not always feel like it, but make no mistake about it. You are being given the greatest opportunity to recapture all that you have had to give up, to prevent the as yet unexpressed misery of this disease, and to grow in unseen ways. The price you have to pay is patience, and the tools you need are guai and determination, perseverence and a little trust that you are on the right path. Love, Dale 
Sun, 11 Jun 2000

More pain, fewer headaches 
My wife is on guai as well as Zoloft. Her FMS doc said to continue the guai (600mg twice a day) and keep going with the Zoloft. She also takes Benedryl at night and a thyroid pill. She has only been on the Guai for a week and has experienced much more pain this first week. Her headaches have gone, though.

Another 13-week update 
I have been on Guaifenesin, 300 mg. 2X day, for almost 13 weeks. At first after a few days I felt awful and that continued for awhile, then I had a few hours of feeling good, energetic, cheerful, hopeful. Then went back to bad, bad and then a day of good, then bad, bad and then about three days of really feeling like my old self before this DD took control of my life. Errands, shopping, cooking, out of bed or off of couch. Then bad again, but different bad. Not as far down as usual. Just last week and into this week I have had about 10 days of pretty good. Have been able to cook almost every day and do heaps of other things. 
 
I have decreased my Effexor from 300mg. (high, I know) to 25 to 50mg. a day. I am happier than I have been in years. I feel optimistic. I cannot believe that I will get better. I was ready to kill myself. Bed was just not for me for the rest of my life. Migraines, pain, etc. It was horrible as you all know. The lack of energy was the worst. I would take a shower and have to rest to dry my hair. 
 
I have tried physical therapy (one year, three times a week), massage therapy (two years at least once a week), Fen-Phen, licorice, magnetic mattress pads (two not one, plus shoe inserts, plus pillow), numerous vitamins and tons of money spent on Blue-Green Algae (gave me my sense of humor back but did nothing else). The guaifenesin is the best. I feel I am getting better. It reverses your symptoms so I know I will have really bad days, but I don't care because I know I will have good days. 

Nearly pain-free days 
I am on 3600 mg of guai. I started five months ago. I have not responded very well until a few weeks ago. Now I have two to three days that are 'almost' pain-free. I like to think in hours instead of days free of pain; 'it's more optimistic. I no longer have restless leg (this I hated most!) I do not tire as easily. I have more days in which I can concentrate for extended periods of time. 

I am 53, I work full-time, and I'm a mother of seven with just the youngest left at home. She's 14, not a handful yet. I was diagnosed five months ago and went on guai immediately. I had a heart-to-heart with my boss. I let him know that guai may make me feel worse at times and that if he felt at any time I could not perform my job, he could replace me. He allowed me to set my own schedule and has supported me every inch of the way. It probably helps that I work in a church as an assistant to three pastors! 

My husband is very supportive and takes over my usual tasks when needed. He is just so happy that there is a name to what I have. I had been previously diagnosed with a variety of unrelated, separate things such as, a troublesome menopause, depression, inner ear disorder, tendonitis, arthritis, migraines, and on and on, a chronic complainer. The only thing (so far) that I haven't complained about is the pain. It seems to be quite tolerable. It's all of the other weird stuff that I can't stand. 

Ain't it great to feel awful?! 
I knew going into this that the guai could make me worse, but I just want to check in with you all to say, 'Ack! I feel awful a lot of the time! Isn't it great??' 

I'm reminded of the time, many years ago when I was in my early 20s and a good friend of mine (of the same age) and I were out having a wonderful day of goofing around'shopping, drinking coffee in little cafes and generally enjoying life. (Remember that?) She and I nipped into a public restroom to pee and she shouted out, 'Oh, hell, I started my period!' and proceeded to grumble about how she knew it was going to ruin the rest of the day, here come cramps, and so on. Mid-litany, she stopped, emerged from her stall with a smile on her face and said, 'Wait a minute! I'm still in school! I don't want to get pregnant yet, so this is GOOD news! I have to feel positive about the inconvenience and the discomfort because it means my birth control is working!' 
 
So, now that I have two ankles that feel as though someone hit them with a 2 X 4, feet that feel like the bottoms are one big blood blister and are numb, a pudenda that is screaming at me day and night, electric shocks in my feet and pud that make me gasp and grab for things like shopping carts and a set of emotions that covers the entire spectrum no matter what the occasion (I cried through the broadcast of the Seattle Sea Fair Parade last night. Go figure!), I'm actually feeling a little bit positive about it.

It's like chemotherapy 
When the pain, brain fog and fatigue are so bad that I don't think I can get through it I remind myself that the Guai is working. I just finished with four wonderful days and today, I can barely sit here. I think I overdid it. This is an FMer who hasn't come out of a flare in over a year, and now I'm feeling like I did when I first got sick and had good as well as bad days. Except these bad days are really BAD days. 
 
But hey, chemotherapy is awful, and people go through it to get well, so I just imagine when the pain is bad that there are little buggers in there getting stirred up and moved around and finally being shown the exit. I can stand the pain because I know when those little buggers leave, I'll feel good again. Before I never had any hope that I'd feel good again.

Hip and leg pain relieved 
Three months on Guai now. I do have some good hours. One positive note is that my hips and legs seem to be much better than when I started. They were the last to be affected by the FMS. I have even been roller blading recently with no real leg problems. My back does burn continually and my neck and arms too. 
 
I am also taking Ultram 50mg 3 to 4 times a day, depending on the pain level. At night I take 20mg of amitriptyline to sleep ( I wish I could find something else that would work just as well - I have terrible sugar cravings and it is a real battle to keep my weight down.) I go to an FMS exercise class twice a week. I also meditate twice a day for 20 minutes each time - a very helpful stress reducer. I have been on a modified 'Zone' regimen, but do not do well with the cravings. I intend on staying on guai for at least a year. 

Success without cycling 
In my case I never cycled. I only had the worst relapse in seven years after only one week on 800 mg/day of guai. This relapse lasted two weeks, and I suspect I'm cured. I didn't notice the better than usual till seven weeks after starting guai. Now it's been a few months and I'm doing great. I'm getting better by the week. 

If it goes away for awhile, it will go away for good 
Dr. St. A used to say to me that if it goes away for even a few hours, it will go away eventually for good. I'm in a bad way today, unsure if it's the Guai or the fact that I overdid when I felt so well. I just had four good days (a few hours of each weren't so great) but I did things I've not done for over a year. I'm so thankful for the little things I accomplished I don't mind this feeling that I'm sliding down into the 'symptom pit.' I'll just take it easy for a few days knowing that I have some good days to look forward to again.

Pain relief 
Over the past few days, I've noticed a relief in pain that I haven't felt in about three years. My upper back is not sore at all, and this is the first time I am pain free since this all started! For several days before, I noticed that I was feeling a little less sore but it wasn't for the entire day - just a few hours each day. 

I still have pain in my legs, hips, lower back and arms but this is very encouraging to me. I realize that tomorrow it might return but I'll take a couple of days of relief! Also, my fibrofog is much better. When I get really tired in the evenings, after I've done too much, I can tell it comes back. However, this morning I almost feel normal! 

I feel like this is so remarkable that I wondered if it was all in my head but I know it's not. My back pain is really a lot better. Also, I have vulvar pain and have noticed that my urinary frequency is much better. 

Three-week update 
It's been three weeks now, and they say that I should know by my third week if it's working. Well, I think it is. I've kept a journal and after going back to the first two weeks and re-reading it, I see that I am doing better, if even a little. 

I was confused about my dosage, my doctor gave me 1200 mg tablet to be started at 300, but I actually started at 600 twice a day. The fourth day on Guai I gave my 10 year old a birthday sleepover party with 5 of his friends. Then spent the next 4 days getting ready for a vacation camping for 10 days. My brain fog increased, my pain level (the all over body aching) and fatigue went way up and I could barely function to get ready for vacation. My journal reports the frustration I felt. 

While on vacation I wished I was home. We came home 3 days early because I was feeling so lousy. But two days after I got home, after two weeks on Guai, I totally cleaned my family room, living room, dining room (the first time in 6 or more months...I'd been using housekeepers and family to keep it clean before). 

Since then it seems each day I have a good spell where the fatigue lets up and the pain is minimal. I still fight the slam-into-the-wall fatigue where I feel if I don't go lie down RIGHT NOW I'll be in a lot of trouble. I find it hard to sleep during the day when I need to rest, but just allowing enough time to lie and meditate helps. 

I've started my water aerobics again, haven't been able to for a year. I tell you, I was really bad when I started Guai, which is why I started it. Many people are put off by the fact that our symptoms get worse, but when they are already severe, what difference does it make? Aside from the fatigue I still feel, I see a change. Some people may think it's just coming out of a flare, but it seems I was in a flare for months before this, so I do believe the Guai helped.

13-week update 
I was diagnosed three years ago and am at week 13 on guaifenesin therapy. The first six weeks were very difficult. All my symptoms got worse; nothing helped the pain, I was really depressed and unable to concentrate. Restless leg syndrome became restless body syndrome. Living without aspirin products didn't prove too big a problem for me as I had been taking Nsaids for pain, but I had to get rid of all my 'all natural' hair, make-up and bath products and switch to 'chemicals.' I am pain free for the first time in years and am sleeping better. The twitching still happens but most of my symptoms have disappeared. Now it also may be directly related to increased summertime activity or the stress-relief I find in the garden but if it's the guaifenesin - and I'm hoping it is - then you must stick this out. 

Five helped by guai 
There were about 35 women at the seminar I attended. Some were on guai. and some were thinking about it. I talked to about five who really had benefited from it. One said she was helped the most because her fog cleared. With her FM, this was the most problematic for her. Another said she had more energy and less pain; she was so much better that she was able to get pregnant. Also, she was unable to have sex for seven years and now since she is on guai is able to. Most of the people I have talked to, in general, experience pain relief. However, some women at the seminar realized after Dr. St. Amand's talk, that they were blocking themselves or doing something wrong. That's why I reminded the group that it is so important to read labels and read Nancy's information on her site. I think so many people try this treatment and are disappointed because they go into it not giving up their cosmetics, soaps, etc. It won't work that way!

More endurance 
I have been on Guai since October, a great deal of time I consider. The beginning I had a smelly detoxifying effect, lots of peeing and yucky mouth. Felt pretty awful but then I always seem to so I didn't see great highs and lows. In January, I really got bad, lots of pain, exhaustion, and depression, it was a long cycle. I had a hard time exercising. It was long, well into March. I stopped guai for a while, for I was unable to pay for the script, but now the good news. 
 
Lately, I have been active, keeping a regular exercise program, have endurance to go along with the day. But the best result so far is my chest and upper back have relaxed. I feel opened up. I can do things I haven't been able to do for years. I would say I am much more agile. I am thrilled. 

Now I am not just taking guai; I don't think any one thing is the cure. I know exercise fits strongly into the picture. I take Klonopin for sleep and Zoloft as my SSRI. But I feel there is improvement for the first time. I am so-o-o- o excited. Hope and pushing the limits are good things. Hang in there all, we can improve our health, and be better for the experience. And if tomorrow I fail in health again, so be it, for I have seen a little light at the end of the tunnel and it looks great.

Remapping is encouraging 
I saw Dr. St. Amand in April and have been on guai for 11 weeks. Last weekend he remapped me and I was very encouraged after looking at my map! So many of my spots are gone and he told me I have really made some progress in such a short time. During the 11 weeks I have felt pretty rotten, and he said for those of us who move through the reversal quickly, that can be expected. Since it happens so fast, we experience very few good days. He was very encouraging and told me that shortly I will notice a big difference. Actually, I have been feeling better than I've felt in quite awhile for the past few days.

11-week update 
After 11 weeks on guai (dose is 1800 mg a day), I can report the following  changes: 
I am sleeping somewhat better. I usually wake up three or five times a night instead of eight or 10. 
I still wake in pain, but can walk it off a bit faster. 
I still have pain in all the same places I had pain 11 weeks ago. 
During the first 1 1/2 years of my illness, I experienced tingling sensations in my sacral/lumbar/thoracic/shoulder area whilst lying prone or on my side and eventually gave up trying to sleep that way. During the last two years it was very painful to try lying in those positions, but the tingling stopped. Now, the tingling is back. 
I am taking hour-long walks now instead of 30-40 minutes. I am stepping more firmly. I alternate walking one day with on the spot cycling the next. If the calf trigger points are bad I rest them. It seems like I want to do things even though I am still in pain. 
I can now endure trigger point therapy, and I don't think I could have a few weeks ago.

Vulvar pain relieved 
I was diagnosed with Vulvar Vestibulitis in 1995. Since I went a year with minimal response to treatments, I suspected something else was wrong. It was fibromyalgia. The vulvar pain I was experiencing was related to the muscle spasms in the pelvic floor region due to FM. I started Guaifenesin in September 1996. My progress has been nothing short of a miracle. I'm rarely in pain now. I now enjoy pain-free sex. I have my life back.

Sleeping better 
I would say that surprised best described how I felt this morning! I went back to sleep for another 1 1/2 hours and then got up, feeling fairly refreshed. That was a total of only 8 1/2 hours in bed, and I usually spend 10 to 11 hours in bed in order to get to the point where I don't feel drowsy in the morning. Now, instead of taking forever to go back to sleep, I can usually fall back asleep within 15 minutes. When I wake up during the night, I sometimes feel panicky/angry (I think that's when a loud noise wakes me up). I always wake up with pain, but I seem to be able to walk it off to a bearable point a little more quickly these days.

Jeri at six months is getting her life back 
Dec. 1, 1997
Today I started working again. Alleluia! Fibro drove me from my career over a year ago. I was doing OK taking care of my house and family, but I had little hope of working again. After six months on guai, I was offered a 28-hour-a-week job, and I took it! Today was my first day. I'm tired, but not exhausted. I can do this! I know without Dr. St. Amand, Claudia, Tesa and the wonderful people at the Guai-Support Group I'd never have come this far. Thank you, thank you, thank you for helping me get my life back again.
Jeri Hird Dutcher
North Dakota
Fibro since mid-1980s
Guai since July 1997
2400 mg/day

Back pain, anxiety gone 
I just wanted to let you know my most recent guai success story. I have had a large area in my right middle back that has been super stiff and has hurt for 24 years. It just COMPLETELY cleared last week. I have had complete mobility in that area for the first time since I was 17 years old. I will be able to dance again! I had such a major leach-out last week, the biggest since my first two months on guai. Not to be gross - but there was so much particulate in my urine in the 48 hour leach out period that it looked more like maltomeal than regular urine. I couldn't believe it. I tend to do a little leaching out every day and then have these mammoth leach-out periods. 
 
I have been on 2400 mg. guai since November 1, 1995. Also, one of my biggest miracles is that I don't have anxiety anymore. I used to be anxious all the time. It's great to just walk around the world without anxiety - and to have my personality back. The guai protocol and the hypoglycemic diet protocol got rid of all anxiety. What a gift! 

Oh, by the way - to deal with the terrible headaches I used to have in the early days of leaching out, I went to an acupuncturist in addition to taking Motrin. It really helped cut the severity and the length of the awful headaches. When I complete my leach-out, I am going to do a back flip off the diving board as proof that it is all gone. I haven't been able to bend backwards for over 20 years. It will really happen for you - you don't even have to believe it - you just have to keep on doing the protocol. 

Temperature, lymph nodes back to normal 
Today is the first day in weeks without a really bad headache, so I thought I would write a letter to everyone to say thanks for all the support and suggestions. My temp is back to normal, and the lymph nodes are back to their normal size, but the headaches continue with a vengeance! 
 
I am convinced that all of the symptoms above are the result of the guai clearing out the garbage from my body. I think the headaches may have been worse when I had the infection, but I firmly believe that guai is the major culprit. HURRAY!!! This is exactly what it is supposed to do. I may feel like hell, but I have hope that tomorrow will be better. And that is what makes all the suffering worthwhile! 

At 10 weeks, Susan's noticing more energy, less pain
March 31, 1998 
After many years of odd and sometimes debilitating symptoms, I was in such pain that I was searching the web for alternative arthritis treatments, came across Devin Starlanyl's site, and with her diagnostic check sheet finally diagnosed myself with FMS in January of this year. 

Then I found Dr St Amand's protocol, took all this info to my MD, and began therapy.  Began Guai in mid-January, so it's been about 10 weeks for me. I'm taking 2 1/2 tablets AM amp; PM, and yes, finally the stench of urine is noticeable.  What a thrill....yuck.  But I sure can tell that phosphorus is being flushed from my body! 

On the other hand, I've got a lot more energy overall and feel a lot better most of the time.  I'm really intrigued by the process of reversal and symptoms returning.   I now notice a lot of symptoms which I have not had in years and which I had forgotten all about . 

The most bothersome is the brain fog which has been with me all along and I know will take the longest to disappear.  The other real problem is swelling of feet and hands, which is fairly striking!  Today have tenderness in the back of my head, sore throat, pain in my fingers and some fatigue. I was able to go to lunch, do some shopping and work on reorganizing my room, though I needed a nap in late afternoon. 

Previously I was sleeping 12 plus hours a day and waking often during the night.  Many days were spent in bed, with either fatigue or severe pain, or both. 

Overall, though, the intermittent pain is much, much more manageable than it was before guai.  And the best thing to come out of this is that in January I would be exhausted after walking a half mile and be little good for the rest of the day. Today I can walk 2 1/2 miles on the treadmill, then shower, go to lunch, do some shopping, work on my scrapbook business a bit, do a load of laundry, and still generally not need a nap...and not be in bed for two days as a result, either.   The fact that it takes me an hour to do the walk is of little importance to me. 

I'm having a hard time with the hypoglycemic diet (yes still) although I know from the increase in energy that it's necessary to cut out almost all the carbs.  I have managed to switch to drinking Crystal Light, and when I eat a burger I get it with lettuce and tomatoes and sort of slide the bun back a bit at a time and nibble away at the burger and veggies.  My son (18) says that it's a disgusting looking way to "suck the contents out of a bun", but I claim it's a skill ;^) 

In any case, I know it'll be a long road to wellness, as I'm fairly certain I've had symptoms for 40 years, but I'm very, very hopeful.  Now if we can just figure out a way to make Little Debbie snack cakes without carbs, I'll be ecstatic! 
Susan Reynolds at the Sizzling & Sunny Delaware Shore

Jennifer at seven months has three pain-free weeks
17 July , 1998
I have been on the guai treatment 7 1/2 months, with about 2 months blocking. I take 300 mg twice a day.

I have had painful FMS symptoms since July,1991, following a whiplash/concussion during an auto accident. Since being on guai, my quality of life has been greatly improved. I have less pain overall, even when cycling. I used to have trouble riding in the car, even for a few miles, because the vibrations felt greatly magnified to me. This has lessened slightly. The severity and frequency of my headaches have diminished significantly. My MPS is gone. I have periods that my skin doesn't hurt when someone touches it lightly, I used to hurt all the time from a soft touch or rub.

I am capable of doing much more day-to-day things like loading the dishwasher and watching our three children during the day. I need to rest in bed quite a bit less. I still hurt significantly when jarred, but it now takes only a couple of days to recuperate and stop hurting from it, rather than one or two or three weeks.

For the first time in seven years, I have had three weeks with virtually NO PAIN. I have even been able to resume light weight training, for the last three weeks or so. This treatment is more than just a fad. It works. Until a cure is found, I think that this is our one great hope.

Sincerely,
Jennifer

Sonia finds protocol difficult but worth it
July 18, 1998
I, too, found the wonderful web site, www.geocities/HotSprings/Spa/5252 when I was just about at the end of my rope! I had had years of pain in my profession of court reporting but attributed everything to the bulging disk in my neck. I had repetitive strain injuries in many places, forearms the worst, carpal tunnel, muscle spasms in shoulders and neck, TMJ, low back pain. At the time, I did not know that the IBS and strange abdominal pain, insomnia, fatigue and lack of energy were all part of FMS.

I finally was unable to continue working in April 1996 and scheduled neck surgery in June. Doctors said this would correct ALL my problems and I'd be back to work in six weeks. I have never worked since my surgery. I was continually getting worse and worse and thought I was losing my mind when all the spasms and pain seemed to be spreading throughout my body. The various doctors had me on eight meds which quickly caused many, many problems. After a year of being very drugged, I knew I was dying and could either lie there and die or pull my bootstraps and try to help myself.

I quit all meds as I didn't know what was causing what. Not an easy thing to do, and it can be very dangerous, but my symptoms were severe enough to take this step. I slowly got stronger with chiropractic, massage, herbal and supplement therapy. I finally reached a point in April where I had so many symptoms of FMS I had to face that I had it. I had been diagnosed right after surgery but could not face having an "incurable" disease. I also knew that although I had regained a lot of strength from September 1997 to April 1998, I could not work, and this was not an acceptable way to continue my life. I had to find some help.

That's when I found the web site and Dr. Devin Starlanyl's book, Fibromyalgia and Chronic Myofascial Pain Syndrome, A Survival Manual. Both Dr. St. Amand and Dr. Starlanyl have FMS. Between the two, I knew I had to convince a doctor to prescribe the guaifenesin for me. I had to try it.

I have been on guai since April 9, and everything the web site says will happen has. It's very difficult at first, but it is worth it. I am having some really good days and doing more than I've done in two years. I just returned from a four-day vacation and did pretty darn well. I am absolutely convinced that guai is giving me and many, many others a new lease on life. The first pain free period I had, I cried so hard with joy that guai was working that I gave myself a headache. I now can enjoy life again. I am hoping to go back to work again, probably in a different profession, but that's okay. I am blazing a new trail and finding my way back to life and enjoying every minute of it.

This is working for many people around the world, and there will be another double-blind study, hopefully soon, to prove Dr. St. Amand's theory. Good luck to all of you.
Sonia

After two years on guai, Heather's well
August 1998
I have noticed FM symptoms since 1985. I might not have noticed them previously, because I was drinking excessively. I was 26 when I quit drinking in 1985. Without alcohol to medicate me, I realized I had insomnia, headaches, my skin tingled, itched, and burned, and if I pushed myself too hard I "got the flu or a sinus infection" that would put me in bed for days.

I sought solutions by improving diet, quitting smoking, and beginning to exercise. These all helped my general sense of well-being, but I still felt tired all the time. I got therapy, thinking my problems related to issues I had not dealt with regarding my alcoholism.

My doctors thought I was depressed and medicated my symptoms with antidepressants, anti-pruretics for my skin tingling and itching, and muscle relaxers for sleep.

The therapy helped me improve my self-esteem and to make better decisions. I finished my undergraduate degree and ended a painful, dissatisfying marriage. I completed my graduate degree, got a much more satisfying, better paying, less stressful job, and married a wonderful man.

My life was great; but I was still chronically tired, got sick with "flu/sinus infections" all the time, and I was beginning to experience muscle pain.

In 1996, I heard about Fibromyalgia. I found information on the Internet about guaifenesin treatment and asked my Doctor to prescribe it for me. He could justify prescribing it since I suffered from allergies and "sinus infections" all the time.

After two years of taking Guaifenesin, I have regained my previous energy level, my allergies are almost non-existant, my headaches are few. I still cycle; when I do, my skin will burn and itch in the area I am cycling. I will feel some fatigue like I need a short nap to be 100 percent.

According to the two months on Guai= one year of FM reversal, I will be cleared in September 1998. I feel like that is an accurate projection.

My experience with self-diagnosis and treatment has sparked an interest in going to medical school. I have wanted to go since my late twenties, but I always thought my health would prevent it. I am exploring that possibility now. I may not choose to go, but I could.

I feel like I can do whatever I want to do now without having to worry about my health. What a great feeling!

Heather L.

Heidi gets her dream job after eight months on guai
August 1998
I started taking guaifenesin on July 1, 1997, only one week after a seminar sponsored by the Vulvar Pain Foundation where I first met Dr. St. Amand and learned of the disorder, FMS. I had suffered from severe vulvar pain for almost nine years, a condition so physically and emotionally absorbing for me that I had ignored the rest of my FMS symptoms until a year before when they had finally left me unemployed, living with my parents, and practically couch-bound. I listened in tears as Dr. St. Amand described a potentially treatable syndrome that encompassed all my health problems.

My first two months on the guai were one long, horrendous cycle, then I had some better days followed by more cycling. It was awful, but eventually I was able to walk a little longer and faster on my daily walks and to start writing again.

After six months on the guai, I was getting restless so I started applying for jobs and returned to my taekwondo club (I was a national competitor in both sparring and forms only three years before - so much for the deconditioning theory). At eight months on the guai, I was finally offered a job -- as a temporary wildlife biologist in Olympic National Park, a job that would require me to drive over 2,000 miles by myself to Washington State, to hike 6-15 miles every day over rough terrain carrying a 50-65 lb. backpack, and to sleep outside on the hard ground.

I knew it was insane and that I wasn#39;t ready yet, but I was so tired of not being able to pursue my chosen career in ecology/nature writing that I said "yes," packed my car, and left for Washington State before I could change my mind. It was one of the best decisions of my life.

I admit it wasn't easy. In fact, some days were so excruciating, I was in wild, screaming tears as I counted each step back to camp, and the drive out there was a week long ordeal in pain. But I DID IT! I never could have done it before the guaifenesin. And I felt good enough to enjoy some of the most incredible experiences of my life -- being chased by a hungry bear; fording wild, raging rivers; grabbing owls out of the air by their feet with my bare hands; and living out of a backpack in the most beautiful back country rainforest I've ever seen -- WOW! Things every ecology graduate student dreams of!

Now, I'm back home in Missouri, and I continue to cycle. I haven't had a pain-free day yet, and my vulvar pain is still bad enough to prevent intercourse or tight clothes, but my good days are good enough to let me pursue half-time employment, an apartment of my own, new friendships, and my first love, creative writing. I know I have many more years of FMS to "reverse" and that I'll keep getting better. Best of all, I have the most incredible memories of a job I loved and the self-confidence to know I can keep on going.

Good Luck and God Bless, Heidi

How Guaifenesin Helped Jeri Lynn Swim With The Whales
October 1998

I would like to take this opportunity to publicly thank Dr. St. Amand, my personal physician Pam Kushner who led me to him, Nurse Claudia, Tesa and each and every one of you. Each of you in your own way has helped lead me thru this maze called FM and furthered my quest toward wellness with your suggestions, hints, solutions and compassion. The single guiding light guaifenesin has provided has been outshone by the outpouring of love found here with all of you.

Now, to the whales. Well in just a minute.I have a mini story to tell. This time last year I was pretty much reduced to couch potato extraordinaire. While I sometimes wanted to be up, I rarely was. My mind spent so much time justifying the "just one more day" and I'll be ready to tackle the world again lie, that it soon started to fail me too. My body hurt all over, the fog sometimes came in so thick I forgot what day it was, and the fatigue was just numbing.

About this time my wonderful friend and doctor steered me towards Dr. St. Amand who subsequently introduced me to guaifenesin.

So, now to the whales. OK, hold on a sec. Exactly 9 months after my first guaifenesin dose my husband, daughter (25 years old) and I set out for Tonga to sail in the South Pacific. During the 11-hour flight in a very small seat I could not stop thinking about the fact that I was even able to stand it. Everyone else in that plane was complaining, I was smiling. Not only did I stand it, two days later I was hauling myself into a 40-foot sailboat for an eight-day odyssey of South Pacific sailing.

Day two, it was threatening to rain, and a squall was racing towards us. We pulled up next to a very small island to wait for it to pass and proceeded to have lunch and play cards and wait it out. About the time the sun came back out I spotted a couple of whale spouts and our skipper quickly maneuvered the boat to a 40 ton mother whale and calf. We stood there looking over at them and could actually see the baby nursing and at one point we were so close we could see the milk in the water as the baby pulled away.

Our skipper, Ongo, told us to get into our snorkel gear and get down to the ramp off the back of the boat. My daughter, our cook Aunofo and I dutifully complied and very soon after that Ongo yelled to us all to swim right for them. Off we went, scared to death, so pumped with adrenaline we could have probably won swimming races, and sporting the biggest smiles imaginable into our snorkels.

As we got closer, a very large dark object began to take shape in the water. At first it looked as if we were just coming up to the shore or a boat. It was, of course, mama whale. We all slowed in unison as the reality of what we were seeing began to sink in. As we got closer we could see the many remora, a kind of sucker fish which sticks to and close by humpback whales. Beneath the remora and her huge body were several sharks as well. At this point it was all becoming totally surreal.

And then it got really, really real. Humpback whales are very curious, and this mama decided to turn towards us to see what exactly was coming towards her side. I don't really know if she just turned or if she also started to head straight towards us, but all three of us kicked into reverse so fast you wouldn't believe it.

The world under water turned into a mass of bubbles, either ours or hers, I don't know which. At this point my recollection is that the three of us just froze and somehow ended up holding hands while the bubbles cleared. What we saw when they cleared was an incredible female humpback whale sitting there staring back at us. She then slowly turned away, and proceeded to introduce us to her new (probably only a few days old) offspring. The baby swam very close to us.

My husband was taking pictures but said he wished that he'd had the video going as the noises coming from our snorkels was hysterical. All in all, a totally awesome experience!

Thanks for letting me share my story with you. I only pray it is one of hope to you if you are hurting, foggy, exhausted or feeling hopeless today.

Hang in there, you too will be able to swim with the whales, whatever shape they take in your life.

Love to each and every one of you,
Jeri Lynn
On Guai 600 mg per day and HG liberal diet for 11 months. Feeling good.

Jane receives real evidence of reversal
December 1998
I've been on guai now since August, settled on a dose of 900mg twice a day, and have thought I was getting better, especially after I had a good day (two days really and they were spectacularly good. I felt terrific! No pain, lots of energy; I can't ever remember feeling any better).

So last week I called the woman I used to see for massage twice a month. I've not been able to afford massage lately, the rates are up and my income is down, but I wanted her to map me, figuring that after eight years, she knew my knots and spasms better than anyone. Anyway, today I saw her, and she was absolutely astonished by the difference in my body. A great many of the lumps have vanished, and she was so excited about guai that she has asked for the web site.

I've sent her the Guai-Support web address. I'm so excited and happy that I'm calling everybody I know with this disease to tell them. My MD will get a call from me next week. I know I've got months ahead of me in this reversal process - but now I have hope and more than hope - real evidence that this therapy works for me. Merry, merry, merry Christmas to Dr. Saint A. and Claudia, and Tesa, and all of you - your posts have encouraged and informed me more than you can know. You are all an answer to prayer.
Jane L. in Durham, NC

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