What is Fibromyalgia?

Fibromyalgia is a biochemical disease that affects mainly muscles, but appears to be able to have an effect on all other parts of the body. Every FMS sufferer I've talked to has at least one other problem going on at the same time, including sleep disturbances, Irritable Bowel Syndrome, Restless Leg Syndrome, cognitive problems, allergies, food intolerances, thyroid imbalances, etc.

It can be very difficult to get an accurate diagnosis - first you have to find a doctor who believes this disease exists. Even when you've had the diagnosis, your doctor will most likely tell you that there is nothing to be done to help your situation, except anti-depressants to aid sleep and pain relief (except most doctors seem to be afraid to prescribe sufficiently effective pain relief for chronic pain). If you're lucky you will be given a pamphlet from the local arthritis organisation.

For a more involved explanation, please see Devin Starlanyl's definition

There is a hypothesis that says that FMS is a genetic disease, whereby the kidneys are not disposing of the waste products of ATP reactions in the body. This leads to a build-up of phosphates roaming around the body, which eventually deposit themselves. The author of this hypothesis is Dr R. Paul St Amand, and he has developed a treatment which opens the tubules in the kidneys, resulting in the deposits being eliminated. This is called the Guaifenesin Protocol.

How does it feel to have Fibromyalgia?

For each person it is a very individual experience.  No two people will experience the same set of symptoms, although you will find common threads amongst them.  Most people experience pain and/or fatigue.  Some doctors think there is only one disease, Fibromyalgia, others think there are two - Fibromyalgia and Chronic Fatigue (CFS or CFIDS).  Until such time as there is a reliable test for Fibromyalgia, it will remain a matter of opinion.

For me, my problems are mostly related to fatigue; in my voyage of discovery since I was diagnosed with FMS, I have learned that if I keep the fatigue under control, I experience little in the way of pain (usually!).  I also experience at various times: cognitive difficulties (also known as Fibro Fog), Irritable Bowel (IBS), hormone disruptions, memory lapses, etc, etc, etc.  The symptoms are numerous, often subtle, often a right PITA!

Also, take a look at Bek Oberin's An Open Letter to those without CFS ... and Tied Up With Rubber Bands - Bek is an inspiring writer.  :-)

How did I know I have Fibromyalgia?

Read about my journey here.

Where have I found information and support?

Check out my lists of books and contacts.

What am I doing to treat my Fibromyalgia?

I joined the Guai-Support Group , an internet list, for support and advice, and I am following the guaifenesin protocol (read about my progress here ) and visit my physiotherapist as needed for treatment on trigger points. I also endeavour to remain as active as I can, which some days isn't very much, other days I'm outside pruning trees, fencing, etc.

Being on the guaifenesin protocol means I have to avoid coming in contact with a group of compounds called salicylates. They are the chemicals made by plants to defend themselves against fungal and bacterial infection, and use the same site in the kidneys as the guaifenesin; however the salicylates are more efficient and block the action of the guaifenesin. This means I must be careful not to touch plants and things with plant extracts in them; I must wear gloves whenever I go outside to work or garden and cannot go outside bare-footed. Leather gloves are inadequate protection if they become wet.  My gloves of choice for outside work are 'milking' gloves, made of nitrile and reasonably strong, or gloves made of a knitted fabric that have been dipped in nitrile to protect the palm and fingers.

Food is not an issue, except for certain potent exceptions, as digestion alters the chemical structure of the salicylates in food.

For every product I use on my skin, from toothpaste to shampoo and moisturiser, I must check every single ingredient. I have a routine for checking the salicylate-status of every ingredient of a product, and I maintain a list of salicylate-free products in which I have checked every ingredient and confirmed that it is safe for me to use.