Susie's Story

3 years on guai...Today is my 3rd anniversary on the St. Amand guaifenesin protocol. Where do I start? To say the least, it has been a wild ride. Three years ago, I was hopeless.  My pain and fatigue were so bad that I was mostly homebound. I had stopped being social because I could no longer carry on a conversation. I couldn’t retain anything I read. I lived in a fog of pain and confusion and daily wished I was dead. I was told I was crazy, had posttraumatic stress and was laughed at by doctors. I finally decided the doctors MUST know what they were doing. Although, deep in my heart I knew it was my body, not my head. At my doctor's prompting I went to a psychiatrist and a depression support group. I was on mega doses of pain medication and getting trigger point shots in my neck and shoulders. I lost my job, my home, most of my friends and my dignity, and I didn't care. As a matter of fact, I didn't have the energy to care about anything.

When I found Dr. ST. Amand and Claudia's website and read their book, What Your Doctor May Not Tell You About Fibromyalgia (reading the same sentence over and over trying to remember), I knew they understood me. They knew me better than I knew myself. They put all the pieces together. I started the protocol, but still had reservations due to the way I had been treated by other doctors and well meaning people trying to "sell" me a miracle cure.

The first four months were awful. I don't recommend this, but I started the guaifenesin and hypoglycemic diet on the same day. The first four months were pure h***. Then one morning I woke up and knew I was getting better. I wanted to go see Dr. St. Amand, NOW I could trust him.  I still couldn't ride in the car very far, so I flew to LA from northern California and found Dr. St. Amand adorable, kind and loving. It was well worth the trip. I was on the right dose of guaifenesin and was, in deed, getting better according to my mapping.

My guaifenesin dose is 600 mg, so I cycle hard and long.  It was 20 months before I felt better more than half the day. So, don't give up too early. I also switched to all fast acting guaifenesin and after a few months realized that I was going in the wrong direction, I was getting worse. Today, I am on Marina Del Rey's Rx and my cycles are much more doable. My plan is to up my dose after Christmas in hopes of clearing faster. I know I’m getting better and better.

TODAY

I still have pain daily, but I live my life and it doesn't slow me down. I also have osteoarthritis, so I'm sure some pain is due to that. I am working part time for the Chevy dealership where my husband works.  I do dealer trades, driving a car to another dealership and bringing one back. I can drive up to 6 hours straight. (Remember, I couldn't even ride that far before guai)

I baby-sit and carry my 3 year old grandson frequently. (I didn't think I would be able to hold him when my daughter was pregnant, due to weakness and pain in my arms) Plus, he has an eight month old brother to carry, too. Two days a week, I pick up our 11-year old granddaughter and we do homework together, or shopping or cooking.

I have rejoined life socially, our calendar this year is very busy. I have forgiven those who weren't there for me in my darkness hours, who didn't understand, and made a choice to reestablish most friendships. The friends and family who were there for me, while I had nothing to give in return, are even dearer to me today. Especially, my sweet husband who worked all day and took care of me when he got home from work---never complaining. (I don't know if I could have been so kind if the roles were reversed) I am blessed. I asked him last night how I was different from 3 years ago.  He Said, "You're alive" Oh yes, very much alive!!!

Last November, I joined Curves. When I joined, I told them I had fibro and needed to get out of my contract if I couldn't do the program. We all know exercise puts us right into a flare. They agreed and I started very slowly, never pushing myself.  It was really hard at first, especially after sitting around for years. Even though I had started to walk, this was asking me to use muscles that hadn't been used in a long time. Well today, a year later, I can go to Curves feeling achy and tired and rather than feeling worse, I walk out energized and feeling better. The workers at curves have said there are only two women with fibro who have stuck it out there and both of us are on the guaifenesin protocol. Believe me, they are sold!!

Christmas this year is so much fun.  I feel like a little kid again. This is the first Christmas since I got so sick that I have had the energy to really get into decorating and shopping AND being excited about it. It isn't a chore.  We are even having 25 or 30 people for Christmas Eve and all our kids and grandkids Christmas morning. Oh by the way, most of the decorating and shopping has been during a hard cycle and while working more days that usual. Amazing!

I want to thank Dr. St. Amand, Claudia, the Admit team and Annette Perry for being there for me in my darkest hours and giving me my life back. You are each precious to me. A year ago, I started a local support group to teach others about guaifenesin and help them with the protocol. Almost daily, I run into someone with fibromyalgia or chronic fatigue or a person who knows someone. I want so much for people, like myself, to have their life back. What makes me sad is that there are those who reject the protocol, for what ever reason, and choose to continue to get sicker and sicker. I hope that those of you on the website support group, who are discouraged or having second thoughts about the protocol, will hang in there. Don't give up too soon.  You, too, can get your life back---maybe not the same life, but a good one. We are better people for what we have suffered. 

Susie Smith

Gaye’s Story 

3 years on guai... I was diagnosed in my 40's after spending thousands of dollars going from doctor to doctor, mostly for my back problems and periods of extreme tiredness. The tiredness started after having a virus type flu, which I couldn’t recover from, three courses of antibiotics and an operation for sinus then developing chronic Candida. I was first diagnosed with Chronic Fatigue/chemical poisoning and I was able to get with a wonderful doctor who had been through the same thing.  She put me on a regimen of vitamins and anti-Candida diet and talked me into a course of chelation therapy, which helped enormously to get my strength back.  Prior to the chelation, I also had detoxification treatment and had became a vegetarian. Unfortunately for me and NZ, this doctor I found retired shortly after.  I was left back with my uninterested doctor who I am sure thought it was all in my head.  She has misdiagnosed me so many times I have no faith in her any more.  During this time I also had my teeth virtually ruined by a dentist who thought he could fix my pain with root canal fillings and crowns on perfectly healthy teeth.  I wish I had known then what I know now!!!  This was simply fibromyalgia.

 My daughter is 39 and is far worse than me and hasn't worked for a long time. It was through her that I got to see the Rheumatologist who diagnosed me with fibromyalgia. I suspect my Mum had it as she complained of the same aches and pains and always had an extremely tender scalp that she couldn’t bear anyone to touch and also had the 'flu-like' symptoms. Before her death she had palpitations for years and said it felt like an elephant pressing on her chest. My grandmother also had symptoms and her doctors told her it was all in her mind!  

My eldest daughter Kerry, (in this picture with me) sadly died in October last year after having a very simple operation on her knees, which I believe she didn’t need to have. Kerry was not given anti-clotting medication even though she was overweight. It was the second time this orthopaedic doctor had performed the op on Kerry’s knees and as a result of the second operation a clot from the right knee went to her lungs and she died.  Kerry had phoned the hospital the day after the operation to say she had chest pain and difficulty breathing.  She was told to contact her own GP who wrote her a script for more painkillers which she had to get someone to collect for her!  I believe Kerry’s knee pain was from the fibromyalgia as so many other fibro patients suffer from knee pain. 

 At the time of writing this (May 2004) I have recently attended the inquest for Kerry with a subsequent letter from the Coroner advising that the hospital review this procedure as well as patient aftercare.  He also advised the need for doctors to understand fibromyalgia, as I had stressed this to the Coroner and the surgeon concerned. A local doctor has written,  "What an absolutely terrible thing about Gaye's daughter. In my experience (anecdotal) these patients have a higher risk of clotting problems such as DVT or Pulmonary Embolism with surgery."  Hopefully the Coroner’s actions will get more doctors to learn about this condition and that it is not ‘all in our minds’.   

After reading Dr St Amand’s book “What Your Doctor May Not Tell You about Fibromyalgia” a couple of years ago, I realised that the symptoms I have had all my life were from this illness. Headaches every day after school from age 5.  I had to quit sports in my early 30’s due to the back pain but pushed myself for as long as I could because I loved sports.  I've had quite a lot of stress throughout my life: my sister force fed me whisky as a baby when we were left on our own and I was stung from a blue bottle jellyfish when very young.  Sometimes I wonder now, whether these are the things that  affected my health, but suspect I was born with FM. Certainly I had Fibromyalgia, from a very early age, as I recall those headaches every day after school and I have always been extremely sensitive to noise and smells.

Symptoms: Super sensitive hearing and smell (which are both a curse). I cannot tolerate perfumes (wish it had never been invented) or noise. I have dry gritty eyes with blurred vision and tender places on almost my whole body with aching and sore places that move around the body.  I suffer with headaches and migraines, brain fog, sinus infections, sore throat, elbow pain, shoulder and neck pain, IBS, nose bleeds, TMJ, cystitis, burning private parts, dry vagina with painful intercourse and digestive problems.  I suspect I have HG and know I should be on the diet because I’ve done it lots of times and feel much better on it. I have high cholesterol (inherited). I love chocolate and crave sweet things. I battle depression and panic attacks.  Rarely sleep more than a couple of hours and have broken sleep every night. 

Diary - April 2002

Since starting Guai in April, this year these symptoms have gotten far worse or started - pain in wrists, chills, hot flushes, extremely cold hands and feet that turn purple, palpitations, pain like heart attack in left chest occasionally, burning hands and feet with tingling, burning private parts, shortness of breath, phlegm in throat and hoarseness, slurred speech (occasionally) and brain fog, elbow pain, shoulder and neck pain (feels like I can hardly hold my head up at times) and my body feels like it is vibrating inside all the time. Before menopause I used to sweat a lot but was always cold.  Since menopause during the last 5 years, I have not felt the cold until the last 2 weeks (is this the guai working?). I just can't get warm at times and shiver with the cold. I used to be constipated all the time, but since age 40 when I learned to eat right and take various supplements they have been regular. However during this last week, I have changed from having IBS to wonderful normal motions for the past few days!  I just can’t believe it. 

When I started on Guai in April I was so tired it was awful but I still managed to work. The pain shifted from place to place so I knew the guai was working, as it was more intense than before guai. The last 10 days or so have been the worst though with wicked brain fog, dry mouth and eyes with very blurred vision, chills, elbow and shoulder pain, migraine and headaches, foot cramps, my feet and hands are so cold they are purple and I am so irritable and depressed because of this which puts an awful strain on my relationships. I have had a lot of stress though over the last few months since my mum died and maybe this has added to the situation as stress always does. I find it hard to tell when I am cycling as this has been almost continuous since starting guai with only a few good days. So I just assume it is working and carry on. I was working 50 hours a week until recently (now only 30) and have been very close to quitting lots of times especially lately but will hold on as long as I can.  

Diary - March 2003

After 11 months on Guai I am starting to hurt in specific places and wonder if this is the tendons and ligaments the group talk about, as the pain is so specific and painful. I've had cystitis and thrush, badly, during this last week, as well. Symptoms that have either gone or are very much reduced are the chest pain, back pain and brain fog.  Do hope they are going but I actually feel worse in some ways as I hurt all over all the time especially my hands, arms and legs.  Around this time I was feeling so bad that I thought I would have to quit guai for a while.  The pain was so bad along with the lethargy, depression etc.  My right elbow was excruciatingly painful especially if I moved in bed at night.  Fortunately I carried on with the guai and pushed through the pain and thank God after the 16^th month I started to see improvement in a lot of things. 

 Diary – May 2004

Now 21 months on Guai.  Thanks to Jacqui who has made me South Auckland mentor for any newly diagnosed fibro folk who may wish to contact an experienced user.  I say thanks because Jacqui asked me to write about myself and my experience and while doing this and then reading what I had previously written at 11 months after starting Guai, I can see such incredible improvement in my condition since then. 

My mental state has been the biggest improvement. I am sure this is due in part to knowing this thing is not ‘all in my mind’ any more and that I am not ‘neurotic’ or a ‘hypochondriac’ as some of us have been labelled.  I am a much happier, calmer person and able to cope with much more.  

 I am however still in a lot of pain most of the time. However, I do believe this will greatly reduce, looking at the changes over the last two years. I hope the tendons and ligaments may be clearing now as I am getting sharper pains. .

 I am so looking forward to getting to year 3 with even more improvements.  Right now I feel great in myself, I enjoy my life and my work. I am fitter than I have ever been and I love waking up each morning to a new day.

Last weekend Jacqui and I and several other people with fibro came together for our first meeting.  I was amazed at how I handled the day without stress and thoroughly enjoyed the whole afternoon.  I look forward to being able to help all folk who need answers or guidance with the guai protocol or just understanding their condition.

 Diary – 28 August  2005

Now 3 years  4 months on Guai.  Well as you can see by the dates I have not felt the need to keep a diary any more.  Carol has asked me for my bio and I am happy to update it in the hope that it may help other fibro folk.  Since May 2004 we have had many fibro meetings at my house and they are so helpful for all who attend as everyone understands exactly what everyone is talking about and we so enjoy them.  At the beginning of this year, I changed my source of guaifenesin to Fludan from Canada as the price is so much more reasonable.  I pack my own capsules.  I found that I cycled harder once starting the Fludan for whatever reason.  I am also sure I am cycling tendons and ligaments and very deep stuff e.g. hips and back.  I haven’t had hip pain like this since I was 14.  The cycles last mostly a few days then might stop and move elsewhere or start again several days later in the same place.  The left one has settled down and the right one has just cycled several times, and my back has been several months off and on.  The cycles are very different to back at the beginning.  They are now deeper and very specific whereas earlier it seemed to be the smaller muscles, neck and shoulders and wrists and elbows.

 I live on a very steep hill and when I moved here 2.5 years ago I struggled to get up the hill and had to stop because I was puffing, panting and my muscles were screaming half way up the hill.  Now I can walk fast right to the top and keep going.  My fitness and strength have improved so much as well as my mental attitude and confidence.  I have all my energy back and can run rings around most 60’ish ladies.  It is almost 2 years since my darling Kerry died and I miss her so much.  She was the one who found Dr. St. Amand and guaifenesin and I will always be grateful for all the love and help she gave me.   She understood! 

Gaye Benney , Red Hill, Papakura; 61,  300mg guaifenesin twice daily since April 2002; Ph:  09-2996463; gaye.b@clear.net.nz