Patricia G., Age 60, 2016
My name is Patricia and my guai birthday is April 1, 2013. My journey with fibromyalgia actually started at birth but I did not know that until I attended a lecture by Dr. Paul St. Amand at the University of Alberta hospital on October 13, 2012. My family physician had diagnosed me with fibromyalgia in 2000 and suggested I join a gym, since exercise was the only treatment he knew of to help with this disease, other than drugs to help with the pain, which I refused. I regularly saw the physiotherapist to work on my chronic back and neck issues and followed their advice for each body part affected with pain. My back, neck, shoulder, knees, elbows, feet were all affected and as I heard Dr. St. Amand I added my headaches, ringing ears, chronic TMJ pain and so much more to my list of complaints. In fact, I felt that I must have I glowed in the dark from all of the x-rays which had failed to diagnose my ailments. No diagnosis was ever made with the exception of fibromyalgia by my family physician. So who was this doctor from California who knew everything about me?
Sitting in the lecture given by Dr. St.Amand I was immobilized as my brain tried to absorb all that I had heard. I could not comprehend what I had just heard since Dr. St. Amand clearly KNEW ME and we had never met. He had a power point presentation of all of MY symptoms, including some I had never voiced. I sat for about 10 minutes and then purchased the book “What Your Doctor May Not Tell You About Fibromyalgia” and the rest of my life began. I read the book twice and booked an appointment with my own personal angel, Cheryl, to be mapped. I cannot say enough about what Cheryl has meant to me and so many others. This journey is not easy but it is so much easier having Cheryl to support any of us fortunate enough to have been helped by her. Of course my map showed several areas of deposit, but the most significant revelation was that only Cheryl, not my MD, Gynecologist or Proctologist could explain the painful lump in my groin. She said it was a lump of phosphate and after just a few months on the protocol it completely disappeared!
It is a learning curve starting the protocol but soon it just becomes normal and the benefits are SO worth it. The intense pain, lack of sleep, multiple symptoms such as burning tears, hair loss, bad nails and skin, digestive problems and heart palpitations are all gone or much so much better that I don’t think of them anymore! I am left with the lingering effects of osteo-arthritis because I was too old for the guaifenesin to prevent the damage already done to my joints. I know my journey to health is ongoing and it will take many more years for me to feel totally well but from my perspective I already feel well after suffering for so long. And now, when I smile I have eyebrows to frame my smiling, non- burning eyes.
Fran P. , 2016
For a lot of years of my adult life , I have had a lot of symptoms that included fatigue, aches, digestive issues, brain fog and tiredness to name but a few.
When I went for medical check ups and tests, they would always came back as showing nothing wrong. I kept asking myself “then why do I feel so crappy?” Eventually, I was diagnosed by a Rheumatologist who said that I had fibromyagia, but other than give me a pamphlet to read (that indicated a lot of doctors thought it was all in an individual’s head), I was pretty much on my own.
Luckily, I found out about Dr. St. Amand’s protocol, and began it in December, 2009. Cheryl had mapped me just before I started and again 3 months later. I am fortunate to be a “low dose quick responder”.
I have found my quality of life has improved a great deal since using the protocol. I generally have more energy, digestive issues are rare, aches are a seasonal thing now, (when colder weather comes on), my brain fog has lifted and I just generally feel better and feel that I can do so much more. Of course, I have to pace myself as when I feel good I just want to do everything and more! I cant thank Cheryl enough for her dedication to helping all of us with her support, sharing of her knowledge and enthusiasm to make a difference in our lives because she has benefited so much from Dr. St. Amand’s protocol too.
Jane B. , Saskatoon— 1800 LA 400 SA , 2016
I have been taking guaifenesin for 14 years. The first two years were wasted as I was taking only Fast Acting- I felt terrible but I did not clear my left thigh as mapped by Dr. St. Amand. I commenced the long acting guaifenesin in 2004. The first five years were very difficult. At times I felt like there was no improvement- but I knew things were getting better slowly but surely. The Fibromyalgia Treatment Centre website was immeasurable in my recovery. They said I would improve and I had to believe it and improve I did. I followed the detailed recovery reports posted and these kept me going.
Sometime around the five year mark I was able to walk a fair distance on soft soil- i.e. hiking in BC. My vulvadynia improved and I was able to wear pants. I slowly ramped up the exercise over the years and now I can do 15 minutes straight on my Nordic Track ski machine plus a whole lot of stretches. I now take only 5mg of amitriptyline compared to the 75 mg in the pre-guaifenesin days. I have experienced deep sleep- something I have not had since being a child.
Chronic fatigue has been with me for many years. I remember the early cycles as a child even. Some things that I couldn’t do like wring out a washcloth, lift my hands to wash my hair, walk, stand, bend over, sit, or simply do a series of household chores without being in terrible pain, are now a thing of the past.
First years on guaifenesin were awful- it felt like the flu everyday. Now it is so, so much better. I can do many things in a day including pushing a hand powered grass mower, vacuum the house, make dinner, garden, lift sod – and on it goes. Yes, I still do get a knock out session of chronic fatigue occasionally but it lifts after a day or a few hours depending on the situation.
I am still cycling. My feet do not like walking on cement- they hurt, as does my neck sometimes and my shoulder blades. Yes, other things hurt too- but it is nothing compared to the hellish life I lived before. I was able to add a bit more guaifenesin do my dosage around the 10 year mark and this has helped.
The Trigger Point Therapy Workbook had also been a huge help. I use hard rubber balls and self massage into the trigger points.
The most difficult things for me are still emotionally difficult situations which knock me for a loop or dealing with a lot of people. I have learned what works for me and I am trying to stand by that. My eyes are giving me grief these days and so I religiously keep them clean with Lid Care Towlettes and Hylo Gel for moisture. I still go through periods of not sleeping well but I am able to function fine and after a few days I can enjoy a better quality sleep. I still take Zopiclone for sleep.
Having Cheryl heading up the Fibro Free Group in Edmonton has been a wonderful thing for me. Her help and guidance in addition to her monthly updates are a huge help for me as I continue on this journey of recovery. Thank-you Cheryl.
I also want to thank Kyle from the Estevan Pharmacy in Victoria. He is always willing to help. I hope he is there for a long long time.
Louise H. – Age: 67 years, 2012
Although I started on the guaifenesin late in life at age 66 years, I have seen some very positive results in the last 1-1/2 years. I have had chronic pain in my left hip for the past 15 years, have been to doctors, chiropractors, physiotherapists, acupuncture , been x-rayed, and nothing helped. I was unable to sleep on my left side for several years. Now I have almost no pain in my left hip and can sleep on it easily.
Along with physical recovery, I am experiencing mental and emotional recovery as well. My brain fog started to lift as soon as I started the guai, and I now feel more present to my life. Before guai I felt very shut-down emotionally and now I have more access to my feelings and have more interest in life in general. I can speak again. Previous to taking the guai I was very brain-fogged and my tongue was swollen and sore, making speech difficult. Now my tongue has nearly returned to normal and I still have a little pain in it sometimes, and I see a great improvement.
I am looking foreward to more recovery as I continue on the guaifenesin protocol.
Iris K. – Age: 68, 2012
In 2005, I found the fibromyalgia support group through the Edmonton Journal’s article on Cheryl Kowalewski and the guaifenesin protocol. At that time I was starting to feel sicker than ever before even though I did not look sick, I felt just awful. I was getting worse. I was diagnosed in my early 40’s. To date I am 68 years old and am active and functioning at a much higher level than before, exercising at the gym 3 times a week ( I have a personal trainer) working part time and babysitting my little granddaughter once a week. I have my life back.
I am presently on 2600 mg of guai daily and I hate to think what my life would be like if I did not take guai and follow the protocol. I am very grateful for Dr. P. St. Amand and his protocol and also to Cheryl, our Guai. Leader. Our doctors need to be informed about this awful disease and how much misery it inflicts on patients, especially if some doctors do not make a point of being aware of the nature of this disease and the patient is left helpless and having to cope on their own.
Gayleen W. – Age: 62, 2012
I was diagnosed with fibromyalgia in July of 2004. I had had two back surgeries (2000, and 2002) and was left with nerve damage in my right leg. I had a wonderful career in banking and my future looked very good until I had the back surgeries and didn’t seem to have gotten to the root of the problem. I couldn’t return to work and was very depressed. Luckily, my sister-in-law who knew of my fibromyalgia diagnosis saw an article in the Edmonton journal written by Cheryl Kowalewski telling her story about fibromyalgia and the Guaifenisen Protocol. I was so excited that I immediately took the article to my doctor and showed him. He kept it for a week or so and when I went back he was not receptive to it, so I didn’t pursue it at the time but it was always in the back of my mind. When there was another article written by Cheryl three years later about Doctor St. Amand coming to Edmonton, I had to see him in person.
After hearing his presentation and reading the book, I made an appointment to see Dr. St. Amand and that was the changing point in my life. I was convinced that this would work. I have gone from sleeping two to three hours a day, unable to go up and down stairs, not attending family functions, limited mobility, to a person who has got her life back, thanks to the protocol. I attend an exercise program two times a week and exercise at home and I volunteer at our Church Thrift Shop. I can clean my house, entertain my family, (which I couldn’t do for years). The fibro fog has cleared (oh yes there are set backs but that is nothing compared to what my limited life was before) but thanks to Dr. St. Amand and Claudia Marek I do have a life again and I am so grateful. My doctor prescribed guaifenesin for my even though he still doesn’t believe it. The Guaifenisen Protocol is my answer to fibromyalgia.
Gayleen W. Fibromyalgia Update April 2017
I last wrote about my ﬁbromyalgia journey on guiafenisen in 2012. Life has been kind to me. I had another back surgery in 2014 and have come to realize that my back issues and ﬁbromyalgia are often intertwined. I try to follow the motto “ if in doubt throw it out” and if I have made a mistake on a product I have used, it just teaches one to be more vigilant and to keep on the protocol without deviation. I have never found it to be a huge problem ﬁnding a sal -safe product and am thankful for the guide that this support group has for us to use and continue to check the ingredients before purchasing. I urge beginners of the protocol not to be discouraged or put oﬀ trying the protocol for fear of using a wrong product because I think we learn from our errors and it is fun ﬁnding a product we can use on our own and promotes conﬁdence. I have been fortunate to have the opportunity to take several family vacations in the past eight years and couldn’t think about going on a trip prior to being on the protocol. I can perform chores and take part in activities that once I didn’t have the energy too. I have gone to the same physician for 17 years, who still doesn’t endorse the Guaifenesin protocol, but he does respect me and knows that it works for me so he does prescribe my guiafenisen which I appreciate. I have never looked back or thought about trying anything else for ﬁbromyalgia because for me the Guaifenesin protocol is the answer. I can’t thank Dr. St. Amand, Claudia Marek, and Cheryl Kowalewski enough for their unending dedication and work . Again, this protocol is my answer for ﬁbromyalgia.
Beverly M. – Age: 49, 2012
I’m a 49 year old female with severe fibromyalgia, IBS, type 1 diabetes for 23 years, numerous food and chemical sensitivities and one kidney due to an accident in 2005. I had a lot of trouble with my health for years before losing a kidney, but after the positive effects of six pints of donor blood had worn off, I could not function at all. There was unbearable pain, extreme exhaustion, very poor quality sleep and insomnia, my hair and eyelashes were thin, TMJ, acne and splitting skin, frequent migraines, muscle/nerve twitches and spasms, heart palpitations, depression, poor memory and concentration, and a long, long list of other complaints. My blood sugars were not behaving as they should and I knew I had to find answers before my lone kidney gave out and poor blood sugar control resulted in irreparable damage.
Then I found a GP in Edmonton who recommended the book that saved our son’s and my life– “What Your Doctor May not Tell You About Fibromyalgia” by R. Paul St. Amand and Claudia Marek. I struggled through it (took 6+ months and my comprehension was poor), started on the guaifenesin protocol in January, 2009 and our two sons (now 20 and 23) were diagnosed and started that same year. They both have epilepsy and our older son was not able to control it with many different seizure medications we tried. He went off gluten, dairy, soy and corn as well and now has not had a seizure in two years. No more seizures for our younger son either. They are now both able to work and go to college, drive and have normal lives. My husband and I no longer live in fear every time they go somewhere.
As for me, I no longer need 8 painkillers a day, which was not enough to control all the pain 3 years ago. In the past three weeks, I have taken a total of two during all that time! I can’t always go for a walk every day, but I do what I can. I can actually sleep the whole night without jolting awake many times and I wake up without severe pain. My concentration has improved so that I can have much more meaningful conversations without asking for repetitions and trying to remember words. I have even been able to read some books. Migraines are far less frequent. Blood sugars are getting better and I now understand that Fibromyalgia causes insulin resistance and far too much muscle tension and pain for decent control. A huge number of symptoms that I would not have associated with Fibromyalgia years ago are gradually going away because of guaifenesin. When my husband and I went to Marina Del Rey, California in April, 2012 for the first time, Dr. St. Amand was wonderful. He said I was clearing very well and he confirmed that my husband also has a mild case of FMS. My goal now is to help him to get on guaifenesin so he doesn’t continue to get worse.
Because of the guaifenesin protocol, I now have confidence that my family can enjoy meaningful and good quality lives. I am extremely thankful for it and all those people who cared enough to help, support and educate my family and me. There is a huge difference if I miss a dose or block and I would never choose to be without it again. It is DEFINITELY worth the effort!
Clayton J. – Age: 52, 2012
Hi my name is Clayton Johnson. I am 52 years old and I have Fybromyalgia. In 2005, I became very sick and unable to move much and in extreme pain all the time. It took nearly 3 years to get diagnosed, and became very frustrating. When I was finally diagnosed and told it was fibromyalgia I didn’t know what to think. The doctors that diagnosed me said sorry and good luck with it. As I became worse and worse I felt that soon I would be in a wheel chair, then I heard about the Fibrofree group in Edmonton and decided to go to a meeting and check it out.
In Oct., 2008 I went to my first meeting. I met others like me and found they were improving their life due to GUAIFENESIN and Dr. St. Amand’s protocol. I thought why not give it a try it can’t make me any worse. With the help of Cheryl and the protocol, I started my journey.
With Cheryl’s mapping ability and guaifenesin in hand, on Jan. 2, 2009 I began the process of gaining my life back. It took a lot of increased pain and encouragement from friends and family to continue but I wanted my life back. Within eight months of starting, I returned to work, started to coach ice hockey and by Christmas played hockey for the first time in six years. I had my life back! Now, three and a half years after starting the protocol, I feel like I never had the disease.
Never give up, hope is within reach.