Online Support Group
IMPORTANT ANNOUNCEMENT: The Guaifenesin Protocol Support Group has moved to Facebook!
Moving forward, this will be the new location for finding support for Dr. St. Amand's Guaifenesin Protocol.
Moving forward, this will be the new location for finding support for Dr. St. Amand's Guaifenesin Protocol.
Below, you will find information on how to find and search the archives of the GUAIGROUP. These archives have a lot of information on the Guaifenesin Protocol. However, the group is now moving over to a Facebook group (see above) and the GUAIGROUP will no longer be actively maintained. If you have any questions about the Guaifenesin Protocol, please post them to the new Facebook group, as that is the only place that will be actively monitored.
We launched our online support newsgroup, GUAIGROUP in September, 2002. Since then, more than 2000 people have signed on and received help and support from our community. The group was established to help those wishing to reverse their fibromyalgia using R. Paul St. Amand M.D.'s guaifenesin protocol...and friends and family are welcome to join, too.
All mailing list services have been donated by LISTSERV® International, Inc.We would not be able to offer this service without their generosity. We are profoundly grateful for their support and help.
The hardest part about using the Guaifenesin Protocol is getting started; having access to accurate information, friendship, caring, and wisdom from knowledgeable people can make a difference in your success. We invite everyone to join our community. Our Admin Team members are all multi-year veterans of the protocol. They are all unpaid volunteers who have no official connection with the medical practice R. Paul St. Amand, M.D.
We have tried to structure the newsgroup to be as user friendly as possible. The only restriction on discussion is that it doesn't stray from the subject of the Guaifenesin Protocol. The sole purpose of this group is to support those who wish to reverse fibromyalgia using this treatment. Other protocols are off topic for that reason. We believe there are many other groups --but ours is designed for one purpose--so we ask that you respect that.
We have only three rules:
1) It is mandatory that you preserve the confidentiality of this group and NOT repost, copy, or forward anything posted by our members to any other group, list, or forum without the author's explicit permission. The author of each message owns copyright to posted messages.
2) It is mandatory that you extend to all our members courtesy, kindness and respect.
Therefore:
Humor is acceptable as long as it is politically correct and related to fibromyalgia.
Spiritual, religious or political topics or references are not allowed in any form (including your user name) so that all our members may feel comfortable. No exceptions on this one!
3) Product endorsements for the purpose of generating profits are not allowed. Infringement of these rules will result in your removal from the newsgroup without prior notice.
If you have any questions about our rules please contact a member of our Admin Team or Claudia Marek at [email protected].
Click here to easily subscribe to GUAIGROUP.
You can also Search the GUAIGROUP archives here.
All mailing list services have been donated by LISTSERV® International, Inc.We would not be able to offer this service without their generosity. We are profoundly grateful for their support and help.
The hardest part about using the Guaifenesin Protocol is getting started; having access to accurate information, friendship, caring, and wisdom from knowledgeable people can make a difference in your success. We invite everyone to join our community. Our Admin Team members are all multi-year veterans of the protocol. They are all unpaid volunteers who have no official connection with the medical practice R. Paul St. Amand, M.D.
We have tried to structure the newsgroup to be as user friendly as possible. The only restriction on discussion is that it doesn't stray from the subject of the Guaifenesin Protocol. The sole purpose of this group is to support those who wish to reverse fibromyalgia using this treatment. Other protocols are off topic for that reason. We believe there are many other groups --but ours is designed for one purpose--so we ask that you respect that.
We have only three rules:
1) It is mandatory that you preserve the confidentiality of this group and NOT repost, copy, or forward anything posted by our members to any other group, list, or forum without the author's explicit permission. The author of each message owns copyright to posted messages.
2) It is mandatory that you extend to all our members courtesy, kindness and respect.
Therefore:
Humor is acceptable as long as it is politically correct and related to fibromyalgia.
Spiritual, religious or political topics or references are not allowed in any form (including your user name) so that all our members may feel comfortable. No exceptions on this one!
3) Product endorsements for the purpose of generating profits are not allowed. Infringement of these rules will result in your removal from the newsgroup without prior notice.
If you have any questions about our rules please contact a member of our Admin Team or Claudia Marek at [email protected].
Click here to easily subscribe to GUAIGROUP.
You can also Search the GUAIGROUP archives here.
Support group admin team
Claudia Marek
President, Fibromyalgia Treatment Center, Inc.
I can honestly say that I don't know who I'd be without fibromyalgia. My illness shaped my life, almost from the beginning. As a child I had bladder infections before I started school, a situation that continued until a few years after I started guaifenesin. In elementary school it was irritable bowel which I had every school year after fourth grade, often missing weeks of school at a time. In high school I started having headaches, leg and muscle cramps, and back pain. I was not a sickly child, but I was the one who always had mysterious ailments. My mother, bless her, had infinite patience with my complaints and trucked me from doctor to doctor conscientiously.
Sometime in high school I started having chronic, miserable pelvic pain. Despite embarrassing and difficult examinations no cause was ever found for this. My bladder and pelvic pain problems were my dominant complaints---I went from doctor to doctor all my adult life as my symptoms flared. I bounced between gynecologist and urologist like a ping pong ball as they both shrugged their shoulders and tossed up their hands.
My physical problems and my mood swings certainly contributed to my finding myself a single mom with two small sons in my mid thirties. I would never have admitted it then, but I was in pain, physical and emotional -- and my pregnancies didn't help. I could barely cope, and I was always on edge.
When I was thirty-six and suffering from yet another bout of pelvic pain I was given two strong antibiotics and scheduled for exploratory surgery. But, on the eve of surgery, I chickened out and instead gave up on doctors. I rebelled at the idea of being cut open "to see what might be wrong." The antibiotics had left me too sick to stand up and I tossed them out and canceled all my appointments. Instead of searching for answers I decided would never be found, I relied on sugar, coffee (and pain pills when it was really bad) to get me through the day. Not wise, but no other alternative was available.
In 1988 I took a job with Dr. Paul St. Amand. I realized early on that my younger sister had the condition he was working with, then just barely called fibrositis. Fatigue and muscle pain were her complaints: she was a fibromyalgia poster child. As my sister began treatment and I was learning more about fibrositis-fibromyalgia, I wondered if I had it too. A few articles were beginning to mention a bladder connection, and of course I had daily headaches which I had written off as "tension." Since no doctor had ever been able to help me, I figured I had nothing to lose.
Of course I was a high dose, slow responder. (I am always the difficult one.) I stuck with the protocol because I had no better idea of what to do. One day, amazingly, I realized it had been six months since I had had a bladder infection. One day, driving my younger son to school, I experienced the first hour I could ever remember without pain anywhere in my body. So, doggedly, I kept going, and I kept improving. Symptoms I hadn't even equated with fibromyalgia like my contact dermatitis gradually got better.
Today, I am SIXTY ONE years old. My sons are grown and have both been treated for fibromyalgia. My elder son, Malcolm, had full-blown fibromyalgia by age ten. My little niece at the same age today is having chronic, unexplained bladder pain. My family is rife with fibromyalgia, carbohydrate intolerance, and hypoglycemia. But now we have knowledge, and ammunition. I feel better now than I did at thirty, I am stronger, and happier. My message, if I have one, is not to give up. And then, don't give up. Just keep going and do everything you can to get your health back. It's worth it! I am happier, stronger and healthier than I have ever been. I can do more now than I could at 30.
Claudia Marek ([email protected])
Copyright Claudia Marek 2012
President, Fibromyalgia Treatment Center, Inc.
I can honestly say that I don't know who I'd be without fibromyalgia. My illness shaped my life, almost from the beginning. As a child I had bladder infections before I started school, a situation that continued until a few years after I started guaifenesin. In elementary school it was irritable bowel which I had every school year after fourth grade, often missing weeks of school at a time. In high school I started having headaches, leg and muscle cramps, and back pain. I was not a sickly child, but I was the one who always had mysterious ailments. My mother, bless her, had infinite patience with my complaints and trucked me from doctor to doctor conscientiously.
Sometime in high school I started having chronic, miserable pelvic pain. Despite embarrassing and difficult examinations no cause was ever found for this. My bladder and pelvic pain problems were my dominant complaints---I went from doctor to doctor all my adult life as my symptoms flared. I bounced between gynecologist and urologist like a ping pong ball as they both shrugged their shoulders and tossed up their hands.
My physical problems and my mood swings certainly contributed to my finding myself a single mom with two small sons in my mid thirties. I would never have admitted it then, but I was in pain, physical and emotional -- and my pregnancies didn't help. I could barely cope, and I was always on edge.
When I was thirty-six and suffering from yet another bout of pelvic pain I was given two strong antibiotics and scheduled for exploratory surgery. But, on the eve of surgery, I chickened out and instead gave up on doctors. I rebelled at the idea of being cut open "to see what might be wrong." The antibiotics had left me too sick to stand up and I tossed them out and canceled all my appointments. Instead of searching for answers I decided would never be found, I relied on sugar, coffee (and pain pills when it was really bad) to get me through the day. Not wise, but no other alternative was available.
In 1988 I took a job with Dr. Paul St. Amand. I realized early on that my younger sister had the condition he was working with, then just barely called fibrositis. Fatigue and muscle pain were her complaints: she was a fibromyalgia poster child. As my sister began treatment and I was learning more about fibrositis-fibromyalgia, I wondered if I had it too. A few articles were beginning to mention a bladder connection, and of course I had daily headaches which I had written off as "tension." Since no doctor had ever been able to help me, I figured I had nothing to lose.
Of course I was a high dose, slow responder. (I am always the difficult one.) I stuck with the protocol because I had no better idea of what to do. One day, amazingly, I realized it had been six months since I had had a bladder infection. One day, driving my younger son to school, I experienced the first hour I could ever remember without pain anywhere in my body. So, doggedly, I kept going, and I kept improving. Symptoms I hadn't even equated with fibromyalgia like my contact dermatitis gradually got better.
Today, I am SIXTY ONE years old. My sons are grown and have both been treated for fibromyalgia. My elder son, Malcolm, had full-blown fibromyalgia by age ten. My little niece at the same age today is having chronic, unexplained bladder pain. My family is rife with fibromyalgia, carbohydrate intolerance, and hypoglycemia. But now we have knowledge, and ammunition. I feel better now than I did at thirty, I am stronger, and happier. My message, if I have one, is not to give up. And then, don't give up. Just keep going and do everything you can to get your health back. It's worth it! I am happier, stronger and healthier than I have ever been. I can do more now than I could at 30.
Claudia Marek ([email protected])
Copyright Claudia Marek 2012
Gretchen Parker
Admin Team Member
My earliest recollection of FMS pain was at the age three. My mom had just put me in a shopping cart at the A&P when I began screaming from a jabbing pain in my left instep. Mom ripped off my white high top shoe to see if a nail had pierced my foot. There was nothing there. That was in 1950 and I still have that pain sometimes and it makes me limp. It leaves as fast as it appears. That was the beginning of my life with FMS. As an older child there were growing pains. I struggled in school. The combination of FMS, severe hypoglycemia, ADD and a learning disability made growing up difficult.
My passions have always been care for disabled children, crafts and fine art, Norman Rockwell in particular. By the age of ten I knew most of Rockwell's work, had learned about physical therapy and had begun telling everyone that was my life's goal. Most people back then didn't even know what a PT was. Later that career goal changed to occupational therapy when I earned an OT /BS degree with a minor in applied arts (crafts) that has helped in my work with disabled kids. During my senior year in high school FMS reared its head again when the stress of graduation and the life changes that accompany it brought on CFIDS like symptoms that were misdiagnosed as arthritis and allergies. I started college with a vial of allergy medication in my bags and instructions for weekly shots. I suffered joint pain my entire freshman year. It suddenly stopped the following spring and never came back.
Graduation neared and I was facing nine months of clinical rotations at three different universities in three different cities. Then IBS hit with a vengeance along with Meniere's disease and heavy vertigo. One of the med students at the University of Michigan noticed a skin condition that he had seen in diabetics. I took an 8 hour glucose tolerance test. By the end of it I was ready to pass out but was never diagnosed with HG. My blood sugar tested normal at every scheduled blood draw. I started taking Phenobarbital for the IBS and lived with the rest of the symptoms. Throughout my adult life when ever there was stress little things would pop up like VV pain, yeast or bladder infections, IBS or funny "colds" that never lasted long. Over the years I saw every specialist in the book for one thing or another. No one ever connected the dots.
The final decade-long plunge began with a hysterectomy to reduce my pain (didn't work), followed immediately by a move (which I fought with every fiber of my being) from South Carolina to California with two teens. That decade was one of the best and worst of my life. The IBS and HG slowly got worse and the FMS began to appear more and more. I didn't know what it was. My dream of becoming a skilled pediatric occupational therapist was realized when I had the opportunity to work with a well known pediatric PT in Roseville, CA. As my professional skills grew my ability to apply them steadily diminished as the FMS progressed. At the beginning of that ten year period I was able to work an 8 hour day and go home and care for my busy teens and husband. At the end of it, following a move back to S. Carolina and building our retirement home, I no longer was capable of working. I could barely walk across the room due to heart palpitations, sweats, grinding fatigue and what seemed to me to be angina. My daughter was taking care of me when my husband traveled for business. I didn't leave the house alone due to anxiety and depression.
All my medical tests were normal, including extensive heart tests. An environmental physician told me the aromas of other people's perfumes, scented detergents and my new house were killing me. I was practically living outdoors year round to get away from the new house smells. It gets cold in winter here. I spent two years in total isolation with no contact except my husband and daughter. My family thought I was certifiable and finally convinced me of it. To appease them I went to a family counselor, related what was happening and asked her if I was crazy. She relieved my worries telling me I was merely neurotic and it was a normal reaction to the sort of stress I was under. She told me she would be neurotic too in my shoes. I was so relieved to be thinking normally, I thanked her and never went back! That period of isolation was the first time in my life I was finally free to scratch my "art itch". I spent it studying and practicing. It was a good diversion from the suicide I contemplated when my mind was unoccupied.
In 1998 the knot in my rope had started to slip. In desperation I put both my brother's (he was sick too) and my name on a 24 hour prayer list. It seemed the only thing left. Less than a month later I serendipitously (or not) met Dr. St. Amand and Claudia Marek online. Dr. St. Amand told me I had FMS. As an OT I knew FMS and I did not have it! I told Dr. St. Amand he was crazy! Bless them, he and Claudia did not give up on me. Four and a half years later I am a GuaiGroup Administrative Team Member on this list, supporting Dr. St. Amand and Claudia's work. I now have a small business providing Occupational Therapy to disabled children and their families in their homes, and I am proud to show off my award winning art work. Please visit my website, and let me know what you think of my work. It is created with a great deal of humility.
Since starting the guaifenesin protocol I have resumed many of my favorite pastimes like wood and needle working, biking, water skiing, canoeing and riding our jet ski. My head is clear enough to play the piano again; alas my skill has not improved. I've even learned to roller blade. Two years ago I took an 8 mile day hike to 6000 feet above sea level at Yosemite. Last year we sailed for a week with our son in the British Virgin Islands. I can power walk two miles in about 30 minutes and swim for an hour for exercise. There's more but you can get the picture.
We have since discovered our 28 year old daughter has HG and FMS. She started the guaifenesin protocol almost two years ago. She recently was worrying that she is no longer cycling at 3600 mg/day. The look on her face when I told her I thought she was probably already reversed was priceless.
I think my greatest asset here as an assistant is my knowledge of how to eat for HG. I know this topic because I live it every day. It has saved and restored my life. I don't call eating for HG a diet, it is a life style. It is a tool to keep my body running well enough so I can enjoy my recovery. Without managing HG, the reversal of the FMS is worthless. I am so sick when I eat wrong. Disabled children have been my best teachers. They know it is a waste of time complaining about living with a disability. There is too much life to enjoy and it requires doing what you have to do in order to enjoy it. Disabled kids need assistive aids like braces or wheel chairs to function. My assistive aids are guaifenesin and eating properly to keep the HG under control. I embrace my assistive aids wholeheartedly as I now am able to embrace life by using them. My thanks to my special teachers everywhere!
Gretchen Parker
Strict HG diet; Guaifenesin Protocol since April, 1998.
Copyright Gretchen Parker 2012
Admin Team Member
My earliest recollection of FMS pain was at the age three. My mom had just put me in a shopping cart at the A&P when I began screaming from a jabbing pain in my left instep. Mom ripped off my white high top shoe to see if a nail had pierced my foot. There was nothing there. That was in 1950 and I still have that pain sometimes and it makes me limp. It leaves as fast as it appears. That was the beginning of my life with FMS. As an older child there were growing pains. I struggled in school. The combination of FMS, severe hypoglycemia, ADD and a learning disability made growing up difficult.
My passions have always been care for disabled children, crafts and fine art, Norman Rockwell in particular. By the age of ten I knew most of Rockwell's work, had learned about physical therapy and had begun telling everyone that was my life's goal. Most people back then didn't even know what a PT was. Later that career goal changed to occupational therapy when I earned an OT /BS degree with a minor in applied arts (crafts) that has helped in my work with disabled kids. During my senior year in high school FMS reared its head again when the stress of graduation and the life changes that accompany it brought on CFIDS like symptoms that were misdiagnosed as arthritis and allergies. I started college with a vial of allergy medication in my bags and instructions for weekly shots. I suffered joint pain my entire freshman year. It suddenly stopped the following spring and never came back.
Graduation neared and I was facing nine months of clinical rotations at three different universities in three different cities. Then IBS hit with a vengeance along with Meniere's disease and heavy vertigo. One of the med students at the University of Michigan noticed a skin condition that he had seen in diabetics. I took an 8 hour glucose tolerance test. By the end of it I was ready to pass out but was never diagnosed with HG. My blood sugar tested normal at every scheduled blood draw. I started taking Phenobarbital for the IBS and lived with the rest of the symptoms. Throughout my adult life when ever there was stress little things would pop up like VV pain, yeast or bladder infections, IBS or funny "colds" that never lasted long. Over the years I saw every specialist in the book for one thing or another. No one ever connected the dots.
The final decade-long plunge began with a hysterectomy to reduce my pain (didn't work), followed immediately by a move (which I fought with every fiber of my being) from South Carolina to California with two teens. That decade was one of the best and worst of my life. The IBS and HG slowly got worse and the FMS began to appear more and more. I didn't know what it was. My dream of becoming a skilled pediatric occupational therapist was realized when I had the opportunity to work with a well known pediatric PT in Roseville, CA. As my professional skills grew my ability to apply them steadily diminished as the FMS progressed. At the beginning of that ten year period I was able to work an 8 hour day and go home and care for my busy teens and husband. At the end of it, following a move back to S. Carolina and building our retirement home, I no longer was capable of working. I could barely walk across the room due to heart palpitations, sweats, grinding fatigue and what seemed to me to be angina. My daughter was taking care of me when my husband traveled for business. I didn't leave the house alone due to anxiety and depression.
All my medical tests were normal, including extensive heart tests. An environmental physician told me the aromas of other people's perfumes, scented detergents and my new house were killing me. I was practically living outdoors year round to get away from the new house smells. It gets cold in winter here. I spent two years in total isolation with no contact except my husband and daughter. My family thought I was certifiable and finally convinced me of it. To appease them I went to a family counselor, related what was happening and asked her if I was crazy. She relieved my worries telling me I was merely neurotic and it was a normal reaction to the sort of stress I was under. She told me she would be neurotic too in my shoes. I was so relieved to be thinking normally, I thanked her and never went back! That period of isolation was the first time in my life I was finally free to scratch my "art itch". I spent it studying and practicing. It was a good diversion from the suicide I contemplated when my mind was unoccupied.
In 1998 the knot in my rope had started to slip. In desperation I put both my brother's (he was sick too) and my name on a 24 hour prayer list. It seemed the only thing left. Less than a month later I serendipitously (or not) met Dr. St. Amand and Claudia Marek online. Dr. St. Amand told me I had FMS. As an OT I knew FMS and I did not have it! I told Dr. St. Amand he was crazy! Bless them, he and Claudia did not give up on me. Four and a half years later I am a GuaiGroup Administrative Team Member on this list, supporting Dr. St. Amand and Claudia's work. I now have a small business providing Occupational Therapy to disabled children and their families in their homes, and I am proud to show off my award winning art work. Please visit my website, and let me know what you think of my work. It is created with a great deal of humility.
Since starting the guaifenesin protocol I have resumed many of my favorite pastimes like wood and needle working, biking, water skiing, canoeing and riding our jet ski. My head is clear enough to play the piano again; alas my skill has not improved. I've even learned to roller blade. Two years ago I took an 8 mile day hike to 6000 feet above sea level at Yosemite. Last year we sailed for a week with our son in the British Virgin Islands. I can power walk two miles in about 30 minutes and swim for an hour for exercise. There's more but you can get the picture.
We have since discovered our 28 year old daughter has HG and FMS. She started the guaifenesin protocol almost two years ago. She recently was worrying that she is no longer cycling at 3600 mg/day. The look on her face when I told her I thought she was probably already reversed was priceless.
I think my greatest asset here as an assistant is my knowledge of how to eat for HG. I know this topic because I live it every day. It has saved and restored my life. I don't call eating for HG a diet, it is a life style. It is a tool to keep my body running well enough so I can enjoy my recovery. Without managing HG, the reversal of the FMS is worthless. I am so sick when I eat wrong. Disabled children have been my best teachers. They know it is a waste of time complaining about living with a disability. There is too much life to enjoy and it requires doing what you have to do in order to enjoy it. Disabled kids need assistive aids like braces or wheel chairs to function. My assistive aids are guaifenesin and eating properly to keep the HG under control. I embrace my assistive aids wholeheartedly as I now am able to embrace life by using them. My thanks to my special teachers everywhere!
Gretchen Parker
Strict HG diet; Guaifenesin Protocol since April, 1998.
Copyright Gretchen Parker 2012
Anne Louise
Admin Team Member
Hello and welcome to our list. I am in my 60's and I've probably had clear symptoms of FMS since I was 30, if not earlier. I went from doctor to doctor for ten years for my unexplained joint pain that moved around my body, but mostly for the debilitating, crushing fatigue I felt, which was far worse than the pain. I was finally diagnosed in 1995 and began to do everything my rheumatologist prescribed, religiously, but I kept getting sicker.
In 1996, I was lucky enough to be able to telecommute under the Americans with Disabilities Act. It was the only way I could continue to hold a full-time job. But after another year, I wasn't able to do even that. My credit rating was ruined because I was so exhausted I let bills pile up for months, and then tried to catch up with them all at once from deep within the brain fog, causing checks to bounce all over town. If I cleaned the cat's litter box, I was worn out for the day.
By the end of 1997, I was ready to apply for social security disability. For the past three years, I had done nothing but work, eat something, and go to bed to get enough strength to go to work again the next day. I hadn't had a social life for nearly three years. I dared to drive my car only when I felt "good", and then only for one or two miles.
My apartment looked like a garbage house, with paths between piles of unopened mail and stuff I had left out where I could see it so I'd remember to attend to it when I had a little energy. Dishes were piled up so high in the sink I couldn't turn on the faucet. I made such terrible mistakes in my on-line work I was afraid I'd be fired. I had scars all over both hands from cuts and burns I'd acquired while trying to cook during flares, which by now had become one continuous flare. My legs and arms were mottled with bruises from bumping into walls, corners, and furniture, and tripping over air.
Nights were torture. I woke up every hour to hour and a half all night long. I was exhausted, but no matter how long I stayed in bed, I couldn't get enough sleep. I had irritable bowel, irritable bladder, and restless legs. In the mornings, my joints ached so much that at times I was forced to get down on my hands and knees and crawl from the bedroom to the bathroom to the kitchen. I saw news items of people with FMS and CFIDS who were patients of Dr. Kevorkian, and I fully intended to do myself in as well when it got to be too much to bear.
I knew about guai but had been afraid to try it, scared by the warning that it "wasn't for the faint of heart." But I came from stubborn, hardworking stock, and I couldn't bring myself to declare to the Social Security Administration that I was a permanent invalid, unable to provide for myself. By March 1998, I'd decided that the protocol might not be for the faint of heart, but neither was the quality of the life I was living. I decided to try guai and if that didn't work, I would give up and apply for disability status.
I couldn't get an appointment with my doctor until April 8. In the meantime, I sent her articles I'd downloaded on guai, the protocol, the HG diet, and success stories of people who were on guai. At my April 8 appointment she told me it couldn't hurt, and might help. She wrote a prescription for guaifenesin, which I filled on my way home. I took my first dose that evening.
Within two days I felt like I had the worst flu I'd ever had in my life, but without any fever. I was nauseated after I took a dose of guai for the first day or two, but then it went away. For the next several weeks I felt miserable most of the time, and then suddenly, I had two days of total reprieve from the FMS. Not just "good days" -- extraordinary, amazing days. Then I started into the next cycle. I've had all of my old symptoms return in full force and some new kinds of pain as phosphates were redeposited in my muscles until my kidneys could catch up. It truly was not for the faint of heart, but I was a stubborn survivor, and I clung to the memory of those two wonderful days.
A few weeks later, I had a critical project handed to me that should have been started a year ago and hadn't been touched. The deadline was coming up fast. I worked as hard as I could over the Memorial Day holiday weekend and all the next week. I was letting my housework go, dirt was piling up, and I was expecting to crash soon. I didn't. I was like the Energizer Bunny. Furthermore, during the same period, I had a dinner date, my first evening social event in three years. The next morning I was at work at 8:00 for a meeting on the critical project. I hurt all over, all the time, but I kept at it. The same week, I went to the office and worked nonstop for 10 hours on two different days, without a chance to stop and catch my breath. At the end of my endurance workathon, three people stopped me to tell me how much better I was looking these days, and how much more energy I seemed to have!
By the next weekend, I was exhausted and really in pain. I expected to crash and be very sick for at least a week after working straight through 13 of the last 14 days -- and actually going on a date in the middle of it all. I slept, rested, napped, and rested some more all day Saturday. Then Sunday, I got up and felt a little achy and foggy, so I thought I'd continue to take it easy. However, at 8 PM I found I'd cleaned up my kitchen, run four loads of laundry, done some gardening, and downloaded some new software and installed it. Although I was definitely tired, I had less pain and fog than when I woke up that morning. I didn't intend to do all that work; I just felt good and couldn't stand to be doing nothing. That was after two months on guai.
I continued to improve during the first two years, and then the roof fell in for me. A new management team did not believe in FMS (I *looked* like there was nothing wrong with me). They took away my ADA status, and I was back in the office, pulling 8 to 12-hour days again, and carrying a beeper, being awakened at all hours of the night to solve problems. I wasn't able to take proper care of myself, and the stress interfered greatly with my quality of work and my ability to bounce back.
I went on unpaid medical leave and tried to regain my ADA status. Five different doctors at my HMO agreed that I could no longer work in my career, but they refused to say I had even a partial disability that required accommodations. One of them told me the HMO had ruled that nobody with FMS could be called disabled, because it was generating too many legal fees for them.
As the process dragged on, I used up all my savings and began to make withdrawals from my deferred comp retirement account. To save money, I began eating a lot of potatoes, pasta, rice, and beans - although I should have stayed on the hypoglycemic diet. Finally, I could hardly afford my guai and felt there was no point in taking it if I was doing many things to block it anyway, so I stopped.
Then my stubbornness and self-sufficiency kicked in again. I decided the system had failed me, but I still had myself, and I was going to reclaim control of my life. I took early retirement and withdrew the remainder of my deferred comp in a lump sum. I paid off all my debts and moved to Duluth, Minnesota, where my daughter lives with her family. I could live more cheaply there and she could help me out in exchange for baby-sitting. I rented a tiny one, room apartment, started taking guai again, and resting, and exercising, and taking care of myself.
And then an amazing thing happened. In two months, I was better than I had been before I started that yearlong downward spiral. Without intending to, I had put the "two months = one year" rule of thumb to the test, and it was true! Two months later, I got a full-time job as secretary (and unofficial systems analyst) for a high school. It was the first time I'd been able to work full time without crashing in seven years! I bought a tiny house and this past summer, I not only revamped most of the school's databases, I pulled up two rooms of pea-green shag carpet to expose nice hardwood floors, painted the walls and ceilings, made faux built-in bookcases, and tended a small vegetable garden.
I still have to pace myself, I still have a bad cycle now and then, I will always have to take my guai - but a really bad day now would have been a day of heaven for me back in March of 1997. I've reached the point where I'm beginning to clear tendons and ligaments and it truly is a test of patience, and it hurts! But I cannot even conceive where I would be today if I had not taken that first dose of guai on April 8, 1998. I will forever be grateful for getting my life back through the guaifenesin protocol and will forever be willing to help others do the same.
Anne Louise
Age 60; FMS 35 yrs, diagnosed 1995; Guaifenesin Protocol since April 8, 1998.
Copyright Anne Louise 2012
Admin Team Member
Hello and welcome to our list. I am in my 60's and I've probably had clear symptoms of FMS since I was 30, if not earlier. I went from doctor to doctor for ten years for my unexplained joint pain that moved around my body, but mostly for the debilitating, crushing fatigue I felt, which was far worse than the pain. I was finally diagnosed in 1995 and began to do everything my rheumatologist prescribed, religiously, but I kept getting sicker.
In 1996, I was lucky enough to be able to telecommute under the Americans with Disabilities Act. It was the only way I could continue to hold a full-time job. But after another year, I wasn't able to do even that. My credit rating was ruined because I was so exhausted I let bills pile up for months, and then tried to catch up with them all at once from deep within the brain fog, causing checks to bounce all over town. If I cleaned the cat's litter box, I was worn out for the day.
By the end of 1997, I was ready to apply for social security disability. For the past three years, I had done nothing but work, eat something, and go to bed to get enough strength to go to work again the next day. I hadn't had a social life for nearly three years. I dared to drive my car only when I felt "good", and then only for one or two miles.
My apartment looked like a garbage house, with paths between piles of unopened mail and stuff I had left out where I could see it so I'd remember to attend to it when I had a little energy. Dishes were piled up so high in the sink I couldn't turn on the faucet. I made such terrible mistakes in my on-line work I was afraid I'd be fired. I had scars all over both hands from cuts and burns I'd acquired while trying to cook during flares, which by now had become one continuous flare. My legs and arms were mottled with bruises from bumping into walls, corners, and furniture, and tripping over air.
Nights were torture. I woke up every hour to hour and a half all night long. I was exhausted, but no matter how long I stayed in bed, I couldn't get enough sleep. I had irritable bowel, irritable bladder, and restless legs. In the mornings, my joints ached so much that at times I was forced to get down on my hands and knees and crawl from the bedroom to the bathroom to the kitchen. I saw news items of people with FMS and CFIDS who were patients of Dr. Kevorkian, and I fully intended to do myself in as well when it got to be too much to bear.
I knew about guai but had been afraid to try it, scared by the warning that it "wasn't for the faint of heart." But I came from stubborn, hardworking stock, and I couldn't bring myself to declare to the Social Security Administration that I was a permanent invalid, unable to provide for myself. By March 1998, I'd decided that the protocol might not be for the faint of heart, but neither was the quality of the life I was living. I decided to try guai and if that didn't work, I would give up and apply for disability status.
I couldn't get an appointment with my doctor until April 8. In the meantime, I sent her articles I'd downloaded on guai, the protocol, the HG diet, and success stories of people who were on guai. At my April 8 appointment she told me it couldn't hurt, and might help. She wrote a prescription for guaifenesin, which I filled on my way home. I took my first dose that evening.
Within two days I felt like I had the worst flu I'd ever had in my life, but without any fever. I was nauseated after I took a dose of guai for the first day or two, but then it went away. For the next several weeks I felt miserable most of the time, and then suddenly, I had two days of total reprieve from the FMS. Not just "good days" -- extraordinary, amazing days. Then I started into the next cycle. I've had all of my old symptoms return in full force and some new kinds of pain as phosphates were redeposited in my muscles until my kidneys could catch up. It truly was not for the faint of heart, but I was a stubborn survivor, and I clung to the memory of those two wonderful days.
A few weeks later, I had a critical project handed to me that should have been started a year ago and hadn't been touched. The deadline was coming up fast. I worked as hard as I could over the Memorial Day holiday weekend and all the next week. I was letting my housework go, dirt was piling up, and I was expecting to crash soon. I didn't. I was like the Energizer Bunny. Furthermore, during the same period, I had a dinner date, my first evening social event in three years. The next morning I was at work at 8:00 for a meeting on the critical project. I hurt all over, all the time, but I kept at it. The same week, I went to the office and worked nonstop for 10 hours on two different days, without a chance to stop and catch my breath. At the end of my endurance workathon, three people stopped me to tell me how much better I was looking these days, and how much more energy I seemed to have!
By the next weekend, I was exhausted and really in pain. I expected to crash and be very sick for at least a week after working straight through 13 of the last 14 days -- and actually going on a date in the middle of it all. I slept, rested, napped, and rested some more all day Saturday. Then Sunday, I got up and felt a little achy and foggy, so I thought I'd continue to take it easy. However, at 8 PM I found I'd cleaned up my kitchen, run four loads of laundry, done some gardening, and downloaded some new software and installed it. Although I was definitely tired, I had less pain and fog than when I woke up that morning. I didn't intend to do all that work; I just felt good and couldn't stand to be doing nothing. That was after two months on guai.
I continued to improve during the first two years, and then the roof fell in for me. A new management team did not believe in FMS (I *looked* like there was nothing wrong with me). They took away my ADA status, and I was back in the office, pulling 8 to 12-hour days again, and carrying a beeper, being awakened at all hours of the night to solve problems. I wasn't able to take proper care of myself, and the stress interfered greatly with my quality of work and my ability to bounce back.
I went on unpaid medical leave and tried to regain my ADA status. Five different doctors at my HMO agreed that I could no longer work in my career, but they refused to say I had even a partial disability that required accommodations. One of them told me the HMO had ruled that nobody with FMS could be called disabled, because it was generating too many legal fees for them.
As the process dragged on, I used up all my savings and began to make withdrawals from my deferred comp retirement account. To save money, I began eating a lot of potatoes, pasta, rice, and beans - although I should have stayed on the hypoglycemic diet. Finally, I could hardly afford my guai and felt there was no point in taking it if I was doing many things to block it anyway, so I stopped.
Then my stubbornness and self-sufficiency kicked in again. I decided the system had failed me, but I still had myself, and I was going to reclaim control of my life. I took early retirement and withdrew the remainder of my deferred comp in a lump sum. I paid off all my debts and moved to Duluth, Minnesota, where my daughter lives with her family. I could live more cheaply there and she could help me out in exchange for baby-sitting. I rented a tiny one, room apartment, started taking guai again, and resting, and exercising, and taking care of myself.
And then an amazing thing happened. In two months, I was better than I had been before I started that yearlong downward spiral. Without intending to, I had put the "two months = one year" rule of thumb to the test, and it was true! Two months later, I got a full-time job as secretary (and unofficial systems analyst) for a high school. It was the first time I'd been able to work full time without crashing in seven years! I bought a tiny house and this past summer, I not only revamped most of the school's databases, I pulled up two rooms of pea-green shag carpet to expose nice hardwood floors, painted the walls and ceilings, made faux built-in bookcases, and tended a small vegetable garden.
I still have to pace myself, I still have a bad cycle now and then, I will always have to take my guai - but a really bad day now would have been a day of heaven for me back in March of 1997. I've reached the point where I'm beginning to clear tendons and ligaments and it truly is a test of patience, and it hurts! But I cannot even conceive where I would be today if I had not taken that first dose of guai on April 8, 1998. I will forever be grateful for getting my life back through the guaifenesin protocol and will forever be willing to help others do the same.
Anne Louise
Age 60; FMS 35 yrs, diagnosed 1995; Guaifenesin Protocol since April 8, 1998.
Copyright Anne Louise 2012
Cris Roll
Admin Team Member
If you don't think you can feel wonderful and still have fibromyalgia, take a look at my photo. This was taken on July 24, 2009. I'm not cured, but I am well.
I was born into a sick family. There's no way I can prove it now, but I know in my heart that FMS came to me from both my parents. My mother was sickly all her life. My dad had a bad bout of what they called mononucleosis in his 50s. I believe what he experienced was a bad FMS flare. He pushed himself so hard to go back to work that he had a stroke, which was the beginning of the end for him.
Throughout childhood, I experienced myriad symptoms: Stomach pains from eating certain foods; an inability to keep up with neighborhood kids; constant colds and infections; a chronic feeling of having to urinate accompanied by tenderness; and constant, endless fatigue. On Saturday mornings when other kids were outside playing and having a good time, I was sleeping, and my brother and sister were as well. Because my mother never
really felt well herself, she never pushed the three of us if we complained of not feeling well. She knew better. During one of my childhood illnesses, I remember having to crawl to the bathroom because my legs wouldn't hold me up. My mother took us to the doctor if things got bad enough, but people in my small town didn't go to specialists in those days, and we were poor. I lost so much school as a child that it was a miracle I wasn't held back a
grade.
As a teen I had symptoms of what I now recognize as IBS. I never knew there was a name for the things that plagued me. In some ways, I thought it was normal. (If you don't know anything else, anything can seem normal.) I remember once when I was about 16, I stayed home from school and slept for the better part of three days. Other kids dreamed of their futures and what they were going to be when they grew up. I found it hard to have those dreams. Sometimes I wondered if I was dying slowly but I never told that to anyone. All I knew was other kids my age weren't sick all the time.
I ended up not graduating with my class because I had chronic stomach problems between my junior and senior year of high school. I got a job in a department store and went to night school. I didn't seriously consider college until I realized I couldn't spend my life on my feet. I had started having bad pains in my metatarsal arches, like someone driving a hot spike through my foot. I spent two paychecks on a pair of ugly prescription shoes that gave me some relief
Fortunately there is a small university in my town and off I went to school, casting off my prescription shoes in a display of vanity. I was 24 by then. College was great. I made new friends and loved it. I got a work/study job in the library and that was about all I could handle. It took me an extra semester to get through because I couldn't push myself too hard. If I did, I’d get sick. I could never stay up all night to study like some people. If I did, I couldn't function the next day. All the same, I had some pretty good years there for a while.
In my 30s, I began to lose more people in my life. My brother died at 38, an alcoholic with congestive heart failure. His poor body fell apart. He too had been sick all his life. I had always had a problem concentrating. After my brother died, the brain fog really set in. I had to stop reading because I had such a hard time comprehending things. At work, I found a way to deal with it. I was the editor of a small newspaper for senior citizens, and I needed my wits. I found if I couldn't handle one task, there might be another I could do until my head cleared.
I moved in with my mother's older sister in my 30s. She was going blind and needed help. I loved her dearly. She was a friend as much as an aunt. I worked hard when I lived with her. I did things I had never considered doing before because they needed to be done. I caulked windows, painted, hauled sapling trees out of the woods to plant in her field, cut our own Christmas trees and dragged them back through the snow. It was amazing to me
that I could work that hard, but looking back on it now, I realize it fit in with the cyclic nature of FMS that Dr. St. Amand talks about in What Your Doctor May NOT Tell You About Fibromyalgia. It was one of the good cycles that eventually come few and far between and then stop.
Then, one by one, I started losing more family. I had several elderly cousins I watched over. They died, two of them within a week of each other. My aunt spent a year in long term care before she died. I noticed I couldn't seem to walk two miles anymore without needing a nap afterward. In the fall between my 39th and 40th years I tried walking around the lake at my sister's place and had to go right to bed afterward. I was lucky I hadn't collapsed on the way. I had taken an aerobics class and the first round really energized me. By the time I got to the second round, I couldn't keep up anymore. I would lie down on the floor to rest. I finally stopped going.
That winter, I became ill again. I had constant infections in my throat and bladder and muscle weakness. If I squatted, I had unbearable pain in my legs and found it difficult to get up again. I had pain in my armpits. I’d get up in the morning, eat and take a shower and not have the strength to get dressed. I remember lying on the bed one morning and crying and wondering what was wrong with me. That's when I first heard the term chronic fatigue syndrome. It seemed to apply to how I felt. I gradually got a little better with time and plenty of rest but it seemed that each time I had a setback I lost more out of my life. And that was the year my mother died. I became convinced that whatever was happening to me was tied up somehow with all these losses. Stress had always made me sick.
Despite everything I managed to buy a house, thanks to a new job at the same library I worked at while I was in college. When my sister's husband died in 1995, I knew she would have to live with me. She couldn't take care of herself. She had FMS and several other coexisting conditions. She would end up in a nursing home if left on her own. I felt sure of that. Being a caregiver again really put a strain on my already strained system and I just got sicker. Then, in the summer of 2000, I got even worse. I was really scared this time because I didn't know how much longer I could support myself, much less care for my sister. It terrified me that I could lose the home I worked so hard to get.
My dear sister made a casual comment one day when I came back from the ENT with a bottle of guaifenesin that he had prescribed for my sinuses. She had read something in a women's magazine about using guaifenesin for fibromyalgia. I knew some doctorsconsidered chronic fatigue syndrome and fibromyalgia to be facets of the same illness. I hunted and couldn't find the magazine. I got on the internet. Maybe this guaifenesin stuff would help me. I was desperate and I didn't have the money to go from doctor to doctor. Eureka! I found the Fibromyalgia Treatment Center website.
I read What Your Doctor May NOT Tell You About Fibromyalgia. As I turned the pages I kept saying yes, yes, YES! Everything fit. I knew Dr. St. Amand was writing about ME! I discovered I had been hypoglycemic all my life. The symptoms of that part of the illness have caused me an endless amount of heartache. Now that I follow the HG diet I am, in many ways, a different person. My coworkers and friends say I cope with problems better, and I don't become devastated over every little setback in my life. I wish I had known about hypoglycemia thirty years ago. I never knew my anxiety was caused by low blood sugar.
I started the HG diet in Oct. 2000. Within 48 hours, my ankles stopped hurting. I had been hobbling to the bathroom at night. I had to sit on the edge of the bed and rotate my ankles to loosen them up before I got up to use the bathroom, but not anymore.
I started taking guaifenesin at the end of November, 2000 and I haven't looked back. The first six months were hard. I slept a lot when I wasn't working. I was very, very good to myself. My cycles were less clear in the beginning but have become more obvious over time. My improvement has been slow, steady and sure. In the summer of 2000, I was in such agony I had to leave my garden cart in the middle of the yard and go to bed. By the summer of 2002, I was able to accomplish some gardening and painting tasks that had been waiting for me for two years. In the fall of that year, I planted over 600 bulbs in my garden (mostly small ones) and huge daffodil bulbs (100) in a friend's garden. It was wonderful to be able to accomplish all that.
In the late winter of 2003, I started walking again. By the end of the summer, I had worked my way up to 2.5 miles, something I never thought I would ever do again. In the fall of that year, I traveled from my home in northern Michigan to Kentucky to sit in on one of Claudia's presentations to Jan's support group. It was the first long trip I had taken in many years, and I was delighted that I was able to handle it so well. In March 2004, I traveled to California to see Dr. St. Amand and meet Gwen and Char and see Claudia again. That trip was a real victory for me, not to mention a lot of fun.
Fast forward to 2009. As I approach my 60th birthday, I am entering a new decade far more well than I ever expected to be. I work out three days and walk at least three miles several times a week. I garden. In fact, I completely redid my front yard last summer, putting in ground covers and other low growing plants and laying a stone path. I continue to do volunteer work in community parks, working with the GuaiGroup, and by helping teach English to Burmese refugees in my community. My life is full and rich. My capacity for pleasure has increased so much, I have to say that being well is definitely better than being sick. It allows me to give more of myself away, and that only brings more back to me.
I couldn't have done any of this without Dr. St.Amand's guaifenesin protocol. It has certainly saved the quality of my life, and for that I am most profoundly grateful. I invite you to travel this road with us. It won't always be an easy journey but it will be the best one you will ever take. I never thought I would ever feel this well again, and I am looking forward to a much healthier old age. I plan on gardening for the next 20 years at least.
Come join us. We'll help you.
Cris Roll
Guaifenesin Protocol since November 2000; HG diet
Copyright Cris Roll 2012
Admin Team Member
If you don't think you can feel wonderful and still have fibromyalgia, take a look at my photo. This was taken on July 24, 2009. I'm not cured, but I am well.
I was born into a sick family. There's no way I can prove it now, but I know in my heart that FMS came to me from both my parents. My mother was sickly all her life. My dad had a bad bout of what they called mononucleosis in his 50s. I believe what he experienced was a bad FMS flare. He pushed himself so hard to go back to work that he had a stroke, which was the beginning of the end for him.
Throughout childhood, I experienced myriad symptoms: Stomach pains from eating certain foods; an inability to keep up with neighborhood kids; constant colds and infections; a chronic feeling of having to urinate accompanied by tenderness; and constant, endless fatigue. On Saturday mornings when other kids were outside playing and having a good time, I was sleeping, and my brother and sister were as well. Because my mother never
really felt well herself, she never pushed the three of us if we complained of not feeling well. She knew better. During one of my childhood illnesses, I remember having to crawl to the bathroom because my legs wouldn't hold me up. My mother took us to the doctor if things got bad enough, but people in my small town didn't go to specialists in those days, and we were poor. I lost so much school as a child that it was a miracle I wasn't held back a
grade.
As a teen I had symptoms of what I now recognize as IBS. I never knew there was a name for the things that plagued me. In some ways, I thought it was normal. (If you don't know anything else, anything can seem normal.) I remember once when I was about 16, I stayed home from school and slept for the better part of three days. Other kids dreamed of their futures and what they were going to be when they grew up. I found it hard to have those dreams. Sometimes I wondered if I was dying slowly but I never told that to anyone. All I knew was other kids my age weren't sick all the time.
I ended up not graduating with my class because I had chronic stomach problems between my junior and senior year of high school. I got a job in a department store and went to night school. I didn't seriously consider college until I realized I couldn't spend my life on my feet. I had started having bad pains in my metatarsal arches, like someone driving a hot spike through my foot. I spent two paychecks on a pair of ugly prescription shoes that gave me some relief
Fortunately there is a small university in my town and off I went to school, casting off my prescription shoes in a display of vanity. I was 24 by then. College was great. I made new friends and loved it. I got a work/study job in the library and that was about all I could handle. It took me an extra semester to get through because I couldn't push myself too hard. If I did, I’d get sick. I could never stay up all night to study like some people. If I did, I couldn't function the next day. All the same, I had some pretty good years there for a while.
In my 30s, I began to lose more people in my life. My brother died at 38, an alcoholic with congestive heart failure. His poor body fell apart. He too had been sick all his life. I had always had a problem concentrating. After my brother died, the brain fog really set in. I had to stop reading because I had such a hard time comprehending things. At work, I found a way to deal with it. I was the editor of a small newspaper for senior citizens, and I needed my wits. I found if I couldn't handle one task, there might be another I could do until my head cleared.
I moved in with my mother's older sister in my 30s. She was going blind and needed help. I loved her dearly. She was a friend as much as an aunt. I worked hard when I lived with her. I did things I had never considered doing before because they needed to be done. I caulked windows, painted, hauled sapling trees out of the woods to plant in her field, cut our own Christmas trees and dragged them back through the snow. It was amazing to me
that I could work that hard, but looking back on it now, I realize it fit in with the cyclic nature of FMS that Dr. St. Amand talks about in What Your Doctor May NOT Tell You About Fibromyalgia. It was one of the good cycles that eventually come few and far between and then stop.
Then, one by one, I started losing more family. I had several elderly cousins I watched over. They died, two of them within a week of each other. My aunt spent a year in long term care before she died. I noticed I couldn't seem to walk two miles anymore without needing a nap afterward. In the fall between my 39th and 40th years I tried walking around the lake at my sister's place and had to go right to bed afterward. I was lucky I hadn't collapsed on the way. I had taken an aerobics class and the first round really energized me. By the time I got to the second round, I couldn't keep up anymore. I would lie down on the floor to rest. I finally stopped going.
That winter, I became ill again. I had constant infections in my throat and bladder and muscle weakness. If I squatted, I had unbearable pain in my legs and found it difficult to get up again. I had pain in my armpits. I’d get up in the morning, eat and take a shower and not have the strength to get dressed. I remember lying on the bed one morning and crying and wondering what was wrong with me. That's when I first heard the term chronic fatigue syndrome. It seemed to apply to how I felt. I gradually got a little better with time and plenty of rest but it seemed that each time I had a setback I lost more out of my life. And that was the year my mother died. I became convinced that whatever was happening to me was tied up somehow with all these losses. Stress had always made me sick.
Despite everything I managed to buy a house, thanks to a new job at the same library I worked at while I was in college. When my sister's husband died in 1995, I knew she would have to live with me. She couldn't take care of herself. She had FMS and several other coexisting conditions. She would end up in a nursing home if left on her own. I felt sure of that. Being a caregiver again really put a strain on my already strained system and I just got sicker. Then, in the summer of 2000, I got even worse. I was really scared this time because I didn't know how much longer I could support myself, much less care for my sister. It terrified me that I could lose the home I worked so hard to get.
My dear sister made a casual comment one day when I came back from the ENT with a bottle of guaifenesin that he had prescribed for my sinuses. She had read something in a women's magazine about using guaifenesin for fibromyalgia. I knew some doctorsconsidered chronic fatigue syndrome and fibromyalgia to be facets of the same illness. I hunted and couldn't find the magazine. I got on the internet. Maybe this guaifenesin stuff would help me. I was desperate and I didn't have the money to go from doctor to doctor. Eureka! I found the Fibromyalgia Treatment Center website.
I read What Your Doctor May NOT Tell You About Fibromyalgia. As I turned the pages I kept saying yes, yes, YES! Everything fit. I knew Dr. St. Amand was writing about ME! I discovered I had been hypoglycemic all my life. The symptoms of that part of the illness have caused me an endless amount of heartache. Now that I follow the HG diet I am, in many ways, a different person. My coworkers and friends say I cope with problems better, and I don't become devastated over every little setback in my life. I wish I had known about hypoglycemia thirty years ago. I never knew my anxiety was caused by low blood sugar.
I started the HG diet in Oct. 2000. Within 48 hours, my ankles stopped hurting. I had been hobbling to the bathroom at night. I had to sit on the edge of the bed and rotate my ankles to loosen them up before I got up to use the bathroom, but not anymore.
I started taking guaifenesin at the end of November, 2000 and I haven't looked back. The first six months were hard. I slept a lot when I wasn't working. I was very, very good to myself. My cycles were less clear in the beginning but have become more obvious over time. My improvement has been slow, steady and sure. In the summer of 2000, I was in such agony I had to leave my garden cart in the middle of the yard and go to bed. By the summer of 2002, I was able to accomplish some gardening and painting tasks that had been waiting for me for two years. In the fall of that year, I planted over 600 bulbs in my garden (mostly small ones) and huge daffodil bulbs (100) in a friend's garden. It was wonderful to be able to accomplish all that.
In the late winter of 2003, I started walking again. By the end of the summer, I had worked my way up to 2.5 miles, something I never thought I would ever do again. In the fall of that year, I traveled from my home in northern Michigan to Kentucky to sit in on one of Claudia's presentations to Jan's support group. It was the first long trip I had taken in many years, and I was delighted that I was able to handle it so well. In March 2004, I traveled to California to see Dr. St. Amand and meet Gwen and Char and see Claudia again. That trip was a real victory for me, not to mention a lot of fun.
Fast forward to 2009. As I approach my 60th birthday, I am entering a new decade far more well than I ever expected to be. I work out three days and walk at least three miles several times a week. I garden. In fact, I completely redid my front yard last summer, putting in ground covers and other low growing plants and laying a stone path. I continue to do volunteer work in community parks, working with the GuaiGroup, and by helping teach English to Burmese refugees in my community. My life is full and rich. My capacity for pleasure has increased so much, I have to say that being well is definitely better than being sick. It allows me to give more of myself away, and that only brings more back to me.
I couldn't have done any of this without Dr. St.Amand's guaifenesin protocol. It has certainly saved the quality of my life, and for that I am most profoundly grateful. I invite you to travel this road with us. It won't always be an easy journey but it will be the best one you will ever take. I never thought I would ever feel this well again, and I am looking forward to a much healthier old age. I plan on gardening for the next 20 years at least.
Come join us. We'll help you.
Cris Roll
Guaifenesin Protocol since November 2000; HG diet
Copyright Cris Roll 2012
Janet Tani
Admin Team Member
When I got sick in 2004 with pain all over my body I thought I had bone cancer. My aunt had just died from it and I thought I’d developed it too even though I was almost forty years younger than her. I would wake multiple times during the night in excruciating pain and couldn’t sit for more than an hour. I had occasions after an hour out walking I had to sit down due to severe pain. Thankfully, I had a savvy Internist who strongly doubted I had cancer and after sitting in his office describing my medical issues he told me he thought I had fibromyalgia. He was correct. He did do a number of tests to rule out anything else. Thankfully the only thing wrong was FMS.
I went home after that initial visit with my Internist and started reading up on FMS as I knew nothing about it. I amassed a collection of books that all said it was incurable, the cause was unknown and various doctors had theories. One who practices in Michigan pronounced that FMS was due to low thyroid hormones. Another believes FMS is because of low estrogen and progesterone. So what about the people with perfectly normal thyroids and FMS? And what about all the men with fibro? I learned these doctors didn’t know what they were talking about. My savvy Internist was very good at diagnosing FMS but was clueless in how to treat it.
In January 2008, after a number of serendipitous events while my husband and I were leasing a home in Camarillo CA, I met Flora Stay the founder of the company Cleure. She gave me a copy of What Your Doctor May Not Tell You About Fibromyalgia and half way through the book I decided to become a patient of Dr St Amand and get well, as what I read in that book made so much sense to me.
After becoming a patient of Dr St Amand and being on the guaifenesin protocol I realized so many odd medical things that had happened over the years were all due to FMS. When I was about seven years old I developed cycles where my heart would skip a beat. In my early teens I developed acne on my back. When I was sixteen I developed IBS. Out of the blue when I was a college freshman I got a sharp pain in my big right toe that lasted for three - four months and also in college I got rash like circles around each hair follicle on both of my upper thighs. About twenty years ago I started having jagged edged auras in my eyes that came on suddenly and made it difficult to see for fifteen to twenty minutes until they went away.
I call FMS the blind men and the elephant disease as in each and every one of my oddball medical conditions no doctor knew why I had that particular issue. That is until I met Dr St Amand. He knows and he knows how to get his patients well.
Each of us have different guaifenesin journeys. Some of us are much sicker than others and some of us have been very sick for a very long time. I feel very fortunate to have gotten on my guai journey much sooner than many others and I was fortunate in that I felt better the first two months on the protocol which made it possible to drive 850 miles by myself to our new home in New Mexico. So now I fly back to see Dr St Amand each year and each year one by one all the oddball FMS symptoms have been going away. Some take longer than others but they all do go away.
It took two years on the protocol for me to be able to sit for more than an hour without pain. Now sitting for however long is never an issue. I remember in the first year, after flying back from a visit with Dr St Amand, the plane disembarked at the farthest gate in the terminal and having to walk through the entire building to the parking lot with my feet hurting so bad I wanted to take off my shoes or get a wheelchair, or just sit down and cry. Now I can walk all day without any pain anywhere.
All the current admins were the founders of the Guaigroup. I’ve been invited to join them after my being on the protocol for eight years. I hope I can do as good a job as they have done all these years and contribute to helping others get well too.
Janet Tani
Patient of Dr St Amand
High Dose Slow Responder
HG diet due to Carb Intolerance
Guaifenesin Protocol started 3/1/2008
Admin Team Member
When I got sick in 2004 with pain all over my body I thought I had bone cancer. My aunt had just died from it and I thought I’d developed it too even though I was almost forty years younger than her. I would wake multiple times during the night in excruciating pain and couldn’t sit for more than an hour. I had occasions after an hour out walking I had to sit down due to severe pain. Thankfully, I had a savvy Internist who strongly doubted I had cancer and after sitting in his office describing my medical issues he told me he thought I had fibromyalgia. He was correct. He did do a number of tests to rule out anything else. Thankfully the only thing wrong was FMS.
I went home after that initial visit with my Internist and started reading up on FMS as I knew nothing about it. I amassed a collection of books that all said it was incurable, the cause was unknown and various doctors had theories. One who practices in Michigan pronounced that FMS was due to low thyroid hormones. Another believes FMS is because of low estrogen and progesterone. So what about the people with perfectly normal thyroids and FMS? And what about all the men with fibro? I learned these doctors didn’t know what they were talking about. My savvy Internist was very good at diagnosing FMS but was clueless in how to treat it.
In January 2008, after a number of serendipitous events while my husband and I were leasing a home in Camarillo CA, I met Flora Stay the founder of the company Cleure. She gave me a copy of What Your Doctor May Not Tell You About Fibromyalgia and half way through the book I decided to become a patient of Dr St Amand and get well, as what I read in that book made so much sense to me.
After becoming a patient of Dr St Amand and being on the guaifenesin protocol I realized so many odd medical things that had happened over the years were all due to FMS. When I was about seven years old I developed cycles where my heart would skip a beat. In my early teens I developed acne on my back. When I was sixteen I developed IBS. Out of the blue when I was a college freshman I got a sharp pain in my big right toe that lasted for three - four months and also in college I got rash like circles around each hair follicle on both of my upper thighs. About twenty years ago I started having jagged edged auras in my eyes that came on suddenly and made it difficult to see for fifteen to twenty minutes until they went away.
I call FMS the blind men and the elephant disease as in each and every one of my oddball medical conditions no doctor knew why I had that particular issue. That is until I met Dr St Amand. He knows and he knows how to get his patients well.
Each of us have different guaifenesin journeys. Some of us are much sicker than others and some of us have been very sick for a very long time. I feel very fortunate to have gotten on my guai journey much sooner than many others and I was fortunate in that I felt better the first two months on the protocol which made it possible to drive 850 miles by myself to our new home in New Mexico. So now I fly back to see Dr St Amand each year and each year one by one all the oddball FMS symptoms have been going away. Some take longer than others but they all do go away.
It took two years on the protocol for me to be able to sit for more than an hour without pain. Now sitting for however long is never an issue. I remember in the first year, after flying back from a visit with Dr St Amand, the plane disembarked at the farthest gate in the terminal and having to walk through the entire building to the parking lot with my feet hurting so bad I wanted to take off my shoes or get a wheelchair, or just sit down and cry. Now I can walk all day without any pain anywhere.
All the current admins were the founders of the Guaigroup. I’ve been invited to join them after my being on the protocol for eight years. I hope I can do as good a job as they have done all these years and contribute to helping others get well too.
Janet Tani
Patient of Dr St Amand
High Dose Slow Responder
HG diet due to Carb Intolerance
Guaifenesin Protocol started 3/1/2008