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The
GUAIGROUP Admin Team
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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. |
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My
FMS story begins from my memory at age two.
It began with IBS with constipation and diarrhea.
At age four I developed Rheumatic Fever that
resulted in Prolapsed Mitral Valve with PAT.
During grammar school I experienced dizziness,
aches and pains, bladder infections, mouth infections
and low grade fevers and a relapse of Rheumatic
Fever. In High School I experienced more canker
sores, fatigue, dizziness, heavy periods, etc.
I could not participate in Physical Education
classes for the last three years of high school.
At age 19 had surgery for fibroid cysts on both
ovaries which left me with only a piece of one
ovary and one tube. At age 19 I also had four
impacted wisdom teeth removed. At age 21 the
IBS got so bad I was told I had colitis and
needed surgery. I had bouts of sore throats,
the beginning of never ending sinus infections,
and more colds and flu. When I was 26 I had
an emergency C-section with 6 pints of blood
that in turn gave me Hepatitis. At age 28 I
had to have complete hysterectomy to control
heavy bleeding. Things got worse. I was in the
first of three auto accidents with whiplash
in my late 20's. In my 30's and 40's I went
downhill further with many infections, flu,
mycoplasma...you name it. I was the caregiver
for my terminally ill Mother and Uncle for many
years and let myself go, including my teeth
by not going to the dentist. |
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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 |
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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! |
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I
am not one of those who can say they have suffered
from fibromyalgia for a certain number of years.
I don't know exactly when I "got sick."
I just know that I was diagnosed with FMS in
1999. I am a nurse and had been working for
the previous 15 years in very high-stressed
areas, working all kinds of unpredictable and
long hours, working nights, trying to sleep
during the day and always "feeling bad."
I was always getting the "flu." I
had constant allergy and sinus problems. I had
headaches daily. On and off I would have bowel
problems. It seemed like I always had "something"
wrong with me. I just never felt good. I blamed
it on my job. I thought I was burned out, so
I changed jobs to a doctor's office. I became
settled in a nice, calm job in a quiet environment.
But the strange and vague symptoms did not leave.
Instead, they gradually got worse. I was taking
antidepressants. I was on medicine for bowel
problems. I was always taking a pill for something,
like headaches, allergies, foot pain. I was
always feeling bad. I was beginning to feel
like a hypochondriac. I had always had back
pain, neck pain and headaches, but in 1997 I
started having pains all over my body. I never
associated all my symptoms together to be any
one thing. I just thought they were all different
things wrong with me. I went to a cardiologist
for the chest pain. I went to the allergist
for the allergies. I went to the gastroenterologist
for the stomach problems. I went to the rheumatologist
for all my aches and pains. I went to my family
doctor for the various other things. I often
thought to myself that if I sat down with one
doctor and told them every single thing that
was wrong with me and what I was feeling he
would think I was crazy. Jan
Houp |
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If
you don't think you can feel wonderful and still
have fibromyalgia, take a look at my photo.
This was taken on March 3, 2004. I'm not cured,
but I am well. |
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