Susie Smith

Almost 2 years on guai…"Did you see the white light?"  That was what people wanted to know about my death experience due to anaphylactic shock during failed sinus surgery.   "Your body has been through a trauma due to the heart attack and CPR, give yourself six months to get better", the doctor said.  "I don't have six months, I'm the Executive Director over two non-profit sites."  I forced myself to go back to work much sooner than I knew I should, but people were depending on me.

 "What is wrong with me?  I feel like I'm getting worse, not better.  I'mnot sleeping and I hurt all over", I told my doctor.  She said I was depressed, had posttraumatic stress and sent me to a therapist.  I didn't feel like I was traumatized or depressed, it was my body, not my mind, but maybe she's right.

 It was determined that I didn't have PTS, but antidepressants were given, which seems to be the norm when doctors don't know what to do with you.  Finally, I was diagnosed with fibromyalgia, and was told there was nothing they could do for me but teach me how to live with it and fill me with pain medication.  Thanks for nothing!

My health went from bad to worse.  I finally had to walk away from the job I felt was my life calling.  Within a year, I was mostly home bound.  I had migraine medicine for the 16-20 I had each month, muscle relaxants, and I was getting trigger point shots in my neck and shoulders each month. I was on 2000 mg of two different pain medications and still in so much pain I could barely move.  I could no longer read more than a sentence at a time or carry on a conversation.  I couldn't get the words from my brain to my mouth.  Talking with people or being in a noisy room caused me physical pain.

Fibromyalgia is a thief.  It robbed me of my life, as I knew it: my identity, my job, our home, my ability to reason, many friends and my will to go on.  "I wish I HAD seen the light, and walked into it" My world was getting smaller and darker.

Thank God for Dr. St. Amand and Claudia Craig Marek and their book, "What Your Doctor May Not Tell You About Fibromyalgia".  When I was at the point of hopelessness, I discovered their website, www.fibromyalgiatreatment.com. What I read spoke to my inner spirit.  It rang true to my heart.  Finally, someone knew more about me than I knew about myself.  This was someone who had fibromyalgia and had gotten better.   It was as though they had been with me through every health issue I had had my whole life.  They had answers to my questions before I even knew to ask them. Everyday I read the web site, forgetting what I had read the day before.  I started the guaifenesin protocol.  For the first time in months I had hope. Hope is a great motivator.

Today, 20 months later, my world is much bigger.  I still have pain and fatigue, nothing like before, and I know I will continue to get better.  I can make plans and keep them.  I only take 100 mg of pain meds, no more trigger point shots, maybe one migraine a month, if that.  My husband and I joined a Bunko group and it's very noisy.  I have joined a group of women who get together monthly, and you know how noisy 12 women, having fun, can be.  I ride a bike with my granddaughter.  I am, once again, able to attend church with my husband. I have my life back.

My heart aches for others dealing with the hopelessness fibromyalgia brings. There is hope in the guaifenesin protocol.  I was very skeptical in the beginning, but now I'm a walking miracle.

Susie Smith
Morgan Hill, CA

Sandy Fackler

IAlmost 2 years on guai…I’m writing this on my sixty-fourth birthday (May, 2004), approximately eight years after being diagnosed with Fibromyalgia Syndrome.   Yet, I washed the breakfast dishes today with no back or neck pain.  After I finished, I took a relaxing                    swing in the hammock on the deck.  As I stared up at the trees, I reflected how my life has changed since the combined curse and blessing of my diagnosis with FMS.  I have so much to be thankful for.   

Fibromyalgia has been my inconsistent companion since a severe auto accident when I was three months old.  I ended up pulled by one leg from the wreckage, without broken bones because I had mostly cartilage, but covered head to toe in dark bruises. I never had a normal childhood.  There was acute sinusitis, ‘growing pains’ in my legs, and pain in my fingers, neck, shoulders and upper arms.  If there was a party at school, or a test, I had severe anxiety and an IBS attack.  I was thought by teachers and doctors to be a fragile only child with over-protective parents. 

 As I grew through teens to adulthood, there were activities I couldn’t do.  I was too tired to go on a hike, to try out for cheerleader, to endure PE classes, to learn to swim.  A few steps, or a few strokes, and my arms and legs felt as if they would fall off.  If I pushed myself to do something, I was in bed for several days afterwards.    

I married and had three wonderful children.  Raising them was exhausting.  I often had to choose between housework and caring for my children.  About twice a year I would be overwhelmed with my life, both emotionally and physically.  I’d lie in bed, staring at the ceiling and searching my befuddled mind for words to explain what was the matter.  I was diagnosed with variant forms of commonly known problems such as chronic mononucleosis.  The truth was doctors didn’t know what was the matter with me.   

When my youngest two children were teens, I was divorced.  Now working became a necessity.  I found a good job, but one with stress and responsibility.  I coped by cutting back. Work, sleep, and raising my children were my life.  Then my mother was diagnosed with cancer and I became her care giver.  Meanwhile, my daughter married, had two children, divorced, and then became ill in the same unidentified way and needed help with her children.  My story indicates that stress can do a number on a Fibromyalgic’s precarious health.

Then came my big health crash, and I was diagnosed with Fibromyalgia by a Rheumatologist.  My brain fog was terrible.  I sat at my office desk one Monday morning, looking at papers I could not recognize and wondering what my duties were.  I went home and went to bed for my two week vacation.  I had to hire a housekeeper to care for my mother.  Finally I made the difficult decision to leave my job.  I tried a half step down, then a receptionist position, but I could not handle the anxiety when the phone rang, or a caller wanted to leave a message.  My mother died a few days after I left my third job. 

I had surgery to fuse an ankle, ended up in a wheelchair, and didn’t have the energy to get out of it.  I was advised by my GP to file for disability.  I was so fogged and anxious that it took six weeks to complete the application forms.  After six months, I left the wheelchair and began to use a cane. My life was reduced to such a narrow one. I could fix a simple meal, do a single load of laundry one day and put it away the next.  I could shop for groceries as long as I used the electric cart.  I couldn’t climb even one or two stairs without severe exhaustion and weakness.  I could sit at the computer for only one hour each day.  I read and studied as much as I could about Fibromyalgia. 

I rejected the strong pain drugs, which I had always tolerated poorly. Instead I turned to meditation and self hypnosis for sleeping. I watched my diet and realized that eating carbohydrates and meat seemed to cause me more pain, so I became a vegetarian.  I took a stress reduction class and strengthened the skills I had learned on my own.  I learned that rather than to fight my pain I needed to accept it.  I became more comfortable over those two years; but I was still having troubling symptoms, so I knew my condition was deteriorating.

I decided to move near my daughter as she was bedridden with constant debilitating migraines and neck and back pain.  In searching for help for her, we found the website and the Guaifenesin protocol of Dr. R. Paul St. Amand, MD of Marina Del Rey, CA.  We traveled to Dr. St. Amand with my grand daughter, who, at fourteen was being reviewed for Bi-Polar Disorder because of mood swings and bouts of depression and pain.  Dr. St. Amand diagnosed both my daughter and grand daughter with Fibromyalgia that day in March, 2003. 

He explained that Fibromyalgia appears to be genetic in origin and runs in families.  All three of us began to reclaim our lives on the lowest genetic dose of Guaifenesin.  After six months, my grand daughter no longer exhibited the anxiety attacks, or the manic/depressive behavior that had led to the Bi Polar pre-diagnosis.  My daughter’s migraines reduced to one or two per month that first year and are controlled by anti-migraine medication.  She’s now back to work half days and manages her home and family, despite her Fibromyalgia cycles. 

My own recovery is wonderful.  I’ve been on the Guai Protocol for thirteen months.  Gradually, I have been able to do away with my cane and rarely use the electric carts now.  I feel better at sixty-four than I ever have.  I still have Fibromyalgia; there is no cure yet.  When I cycle pain and exhaustion, I take care of myself, clear my schedule, and rest more.  In between, I live a better life than I can ever remember.  My body pain is reduced; my IBS has greatly improved from both the Hypoglycemic Diet and the cycling out of symptoms.

I’ve learned there are people such Dr. St. Amand, his nurse and co-writer, Claudia Marek and volunteers like the Administration Team on the Treatment Center website www.fibromyalgiatreatment.com who care.  They have dedicated their lives to understanding and reversing Fibromyalgia with the Guaifenesin protocol and help others to do the same.  I thank them every day.

Sandy Fackler

Jo 

2 years on guai...I was ordering a book from Amazon for my son for Christmas a few years ago and a pop-up came on my computer saying, “Would I like to order the new fibromyalgia (fibro) book Amazon had to offer?”  I previewed it on line and thought "ah-ha....it sounds interesting" so I ordered it.  Dr. St. Amand / Claudia Marek's book arrived.  I sat down and started reading.  It was like it was being written about my life.  I'd been to numerous doctors for different problems...knee doctor, foot doc, back, irritable bowel, etc., but had never known that they were all linked to having fibromyalgia.  I took my book, made an appt with a doctor in my hometown, who treats fibro, and showed him the book and explained the protocol.  He was skeptical but told me guaifenesin (guai) did not have any side effects so if I wanted to try it he would support me (back then guai was prescription -- he wrote me a year's prescriptions). Since then, I've convinced him this does work and he's referring patients to me for information on the protocol!

I started the protocol.  It was difficult at first giving up all my normal things I use for bathing, shampoo, brushing teeth, etc.  Also hard to remember not to touch plants nor walk in grass.   But as with any habit, it became easier.  I stayed on this guai protocol for about 2 yrs...by this time my symptoms were gone!  No more IBS, no headaches, no acid reflux/indigestion, no hurting knees, feet, etc.  I was able to get on with life and went on forgetting my old symptoms and living my life again!

However, last December, someone introduced my husband to Melaleuca products and how safe and natural they were so we decided to try them.  I figured I'd been "cured" of my fibro so changed to their products (melaleuca plant based).  The first couple months were ok, but by the 3rd month I started having my symptoms come back--some I had forgotten having from before!  By the 5th month, I was a mess.  So, long story short -- you are never cured, so stay on the guaifenesin.  I've now reverted back to my products with no salicylates and am slowing recovering again.  I hate myself for trying that experiment, but at least I know I can do the guai treatment since I did it once before.  I also know for a fact that the guaifenesin for fibromyalgia DOES WORK!!!!

So, if you have any idea to stray please don't.  I'm living proof of that. Now I'm reversing my symptoms again and hoping it doesn't take as long since I was only off the guai 4 months this time.

Jo Weinfurtner

Athens, Ohio- age 51 email:  jweinfurtner@hotmail.com

Beth

My Story ~ 

Almost 2 years on guai…I’m Beth O’Hara and I have a story for you.  It is my story.  For some of you it is your story.  And for others, it will one day be your story. 

I started life as a colicky baby.  I would cry all night…my poor mother.  As a child, I was always sick.  I had no end of digestive problems, no end to the testing and no diagnosis after all of that.  I would tell my mother about my strange pains and we would just chalk it up to growing pains and irritable bowel syndrome.  I had terrible allergies and rarely wanted to play outside.  I was often missing something exciting due to hives, stomach problems, pain, or just plain exhaustion.  My mother said I worked too hard in school and that was why I was so tired.  I did work very hard, but so did other kids and they didn’t seem as tired as me.  Then I had a car wreck at 16 and it took me months to pull myself together again.  I didn’t think that I would ever get out of bed in the mornings again. 

Later, I went to college, sleeping 10-12 hours a night when I could.  I would sleep all weekend if possible.  But after college, I had this miraculous recovery of energy.  I had discovered bike riding and worked up to 35 mile bike rides.  I did yoga for an hour a day.  I kayaked and hiked and learned aikido.  But all that lasted about a year.  I developed intense back and neck pain that just increased and increased.  I blamed it on stress.  Then I had a minor bike accident at 25 and it was just like that car accident at 16.  I didn’t think I would ever be able to get up in the mornings.  I just couldn’t recover. 

I had a desk job and luckily I didn’t have close supervision because I would drag in late and then spend half the day lying on the floor in tears due to the ever-increasing pain.  I started getting all these tender spots especially on my back and shoulders.  And my ribs!  What was this?    I had eczema that got really bad.  I couldn’t sleep and when I did, it didn’t seem to make a difference.  I couldn’t ever think of the right words, making me feel like my brain was atrophying.  I couldn’t think enough to do my job and would often have to ask other people how to do really simple things. 

I’d had this feeling all my life that there was something wrong with my health.   When the pain finally got so bad that I couldn’t go a day without crying, I decided it was worth trying to find an answer, but I dreaded it.  I started the doctor shuffle and surprisingly I got a quick diagnosis of Fibromyalgia.  But then the treatment options were depressing.  “You just need to exercise more.”  “What?  I can’t hardly walk down the hall!”  “You need to get better sleep.  Take this addictive sleep medication and this addictive pain medication.  Oh, and your depression is making it worse.  Here, take this depression medication.”  When a doctor said “Here, take this anti-psychotic” I said, “ENOUGH!”  All these medications had side effects that were as bad as the Fibromyalgia and some much more scary!  And I was not psychotic!  I thought there had to be a way to deal with this that wasn’t addictive.  What was the root cause of this disease anyway?  That was the real way to treat this.  Not by just treating symptoms. 

Out of desperation, I drug myself to the library and checked out every book they had on Fibromyalgia.  This amounted to well over 40 books.  I read and read and read every moment that my brain was working.  I made lists of supplements, medications, and alternative therapies to try.  But these books still either only addressed treating the symptoms or gave theories that only explained one or two symptoms.  But I had dozens of symptoms!  And I was at a point that I couldn’t see how I could possibly spend the rest of my life feeling this bad. 

I kept putting aside the book What Your Doctor May Not Tell You About Fibromyaglia because the title didn’t sound promising to me.  Why wouldn’t my doctor tell me?  I thought it might be about healing crystals and new agey-stuff.  But I wasn’t satisfied with what I had read so far, so why not give it a try?

When I first opened it, I was captivated.  I have a background in biology, and this made sense!  This actually talked about why I was so sick!!  It talked about how this made me feel so bad and why it affected every system in my body.  And best of all, it outlined a treatment that addressed the root cause of this disease and how to REVERSE it.  Reverse it?  You mean I might actually feel normal again???  And there were relatively no side affects?  And the authors donated all proceeds to the Fibromyalgia Treatment Center?  WOW!  I was sold on trying it.  I started my first batch of guaifenesin in December of 2003.   

I was so sick when I started the guaifenesin.  When my pain scale went to a level 10, I thought I would die.  I was at a level 8 daily, and never below a 6.  I couldn’t sleep and I was so exhausted.  I’d started getting this thing where all my limbs would jerk like I was being electrocuted.  Boy was that scary.  My beloved bike became dusty and so did my dreams of riding across the state.  My only exercise was my pitiful yoga practice done lying on the floor and stretching the best I could.  I couldn’t walk up the stairs in my home anymore.  I would scoot up them and when coming down, I was so scared I would trip and fall.  My coordination was shot.  My sex life was non-existent.  I was only pretending to work.  I had no social life and my friends abandoned me.  I can’t blame them.  I quit driving and had to lie down in the car if the trip was longer than 10 minutes.  I couldn’t go see a movie because the volume was excruciating and the chairs so painful to sit in.  I was sick of crying, lying in bed and being depressed.  I didn’t see how I could keep going this way.  How could I ever have children if I can’t even take care of myself?  I was 25.  My only hope was my faithful husband and the possibility that this treatment could make me well. 

Let’s fast forward to May, 2005.  What am I doing now?  Well, I rarely think about pain.  I can walk my dogs for an hour at a time.  I just took my first long bike ride again.  It was wonderful!  I have been going to yoga workshops, doing 12 hours of yoga in a weekend and teaching yoga.  I planted a 200 sq. ft. garden this year – mostly by myself, carrying 40lb bags of soil.  And those stairs, they’re no match for me!  I run up them every chance I get.  I not only have my life back, but I have an intense appreciation for that life. 

For that, I owe so much to Claudia Marek, Dr. St. Amand, and the entire online guai support group.  From the bottom of my energy filled heart, thank you. 

Beth O.