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
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
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
How does it feel to have
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
Read about my journey here.
Where have I found information
Check out my lists of books and
What am I doing to treat my
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.