A Letter from Andrea - Fibromyalgia Hawaii

To our fibro family,

We have been blessed by Andrea who has had remarkable results using the guaifenesin protocol. Below is a "tool" writtten by Andrea for us fibromyalgia sufferers to use to explain our condition to people who don't understand what is wrong with us. I'm sure you will agree it is a gem!

Annette

"A Letter to My Friends and Family"
by Andrea, iFoG member since 2006

I know we've all had trouble being understood by others who don't have/understand the disease. I think education is important. With this message I hope that at least some people who receive it read it and learn something new or perhaps can help someone they know who has fibro.

Hope this finds you all on a good day!

May 12th is Fibromyalgia Awareness Day. I wanted to share some information about fibromyalgia. There are many people out there who don't know about it. I didn't know about it until after I became very sick while in college.

I have fibromyalgia. I became very sick in 2003, but didn't get diagnosed until 2006. I've been following a protocol that works well for me and is reversing my fibro (see link below).

What is fibromyalgia? A chronic condition or disease that affects brain and body. PAIN and FATIGUE are the most common symptoms. It's often called an "invisible" illness because symptoms often seem unrelated, and medical tests are usually normal.

What are the symptoms? In short: PAIN and FATIGUE. Symptoms vary greatly between individuals. Symptoms can also include non-restful sleep, muscle cramps, stiffness, flu-like aches, irritability, headaches, dizziness, IBS symptoms, bladder infections, nasal congestion, ringing ears, rashes, itching, acne, sweating, eye irritation, sensitivity to light, temperature, sounds, smells, and touch... Symptoms often seem UNCONNECTED and can vary day by day, hour by hour.

Fibromyalgia also affects the BRAIN. Fibromyalgics (ALL ages) usually have trouble with memory and concentrating (can be similar to ADD). We call this "brain or fibro fog". Anxiety and depression are also common.

How many people are affected? About 10 million Americans suffer from fibromyalgia (FM or FMS). It's more common in women, but men may also have the disease.

Why have I never heard of this?

Most people with fibro don't look sick.
People with fibro often have other ailments that are often diagnosed before fibro is. (Sometimes these ailments are really caused by fibro.)
Fibro doesn't kill people like cancer or other diseases.
Unfortunately, there are still many doctors who aren't well informed or who understand it. (In my experience, I've been told that I'm stressed, depressed, and just had a temporary fatigue syndrome.)
Not ONE test to diagnose it--often you get many blood tests, etc. to rule out other possible problems. If your tests are normal, but you still have symptoms then you may get diagnosed. (Currently DNA research is being conducted to pinpoint gene mutations in fibromyaligics.)
Fibro was not recognized by the American Medical Association until 1987.

Oh yeah, I've heard of it...on those TV commercials. Can't you just take a drug? Drugs can help symptoms... but there's no cure for fibromyalgia. The most important thing for a fibromyalgic to do is MANAGE their disease. Things like sleep/rest, reducing stress, healthy diet, physical therapy, exercise, some medications, massage, chiropractic care, acupuncture, etc., can all help in managing the disease.

Why am I sending this out? There's probably someone you know who's got fibro. (You know me!) When I first got sick, I didn't know what was wrong with me. It was a long road to my diagnosis and then I had to learn how to manage the beast I was dealing with. I hope this email can help someone else out there. PLEASE---feel free to pass this along to anyone you think may benefit!

What I Follow: The Guaifenesin Protocol: Reversing Fibromyalgia I'm living proof. Dr. St. Amand has a theory that fibro is caused by a body not being able to get rid of extra phosphates like a normal person can. To follow the protocol you take Mucinex (drug name: guaifenesin) and need to avoid salicylates (plant extracts in bath/beauty products, ). It takes some work, but is 100% worth it.

At my worst I was practically bedridden, in constant intense pain. Just getting up, showering and getting ready zapped all my energy. However, today I can work full time (teaching kids, mind you) and live a pretty normal life.

Aren't there other protocols out there to treat fibromyalgia? YES--there are many. I've read about quite a few. Some people say they work for them. I don't doubt that. Some do sound drastic though (taking a lot of hormones for example.) The drug in Mucinex (guaifenesin) has no documented side effects. The guaifenesin (guai) protocol works for me... and I've been in touch with many people in person and online that have had success with guai. The doctor who developed this also uses it to treat his fibromyalgia. He's in his 80's and still practices medicine! I've got something that works and I'm sticking to it!

"Life without hope is no life at all." - Sri Chinmoy

Information about the Guaifenesin Protocol www.fibromyalgiatreatment.com

What Your Doctor May Not Tell You About Fibromyalgia by Dr. Paul R. St. Amand and Claudia Marek

www.fibromyalgiahawaii.com (Support Group in Oahu, Hawaii)

www.fibromyalgiatreatment.com (The Protocol to Reverse Fibro)

web.me.com/dianawolftorres/Fibro/Home.html (Mother and young son's homepage who have fibro and follow guai protocol)

Other Fibromyalgia Resources

www.cfsnova.com (Support group with lots of resources- Greater DC area)