My daughter who is 39 is far worse than me and hasn't worked for a long time. It was through her that I went to see the Rheumatologist who diagnosed me with fibromyalgia. I suspect my Mum had it too, 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 Sandy sadly died in October last year after having a very simple operation on her knees, which I believe she didn’t need to have. It was the second time this orthopaedic doctor had performed the op on Sandy’s knees and the second time a clot from the right knee went to her lungs and she died as a result. I believe Sandy’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 Sandy which reulted in a subsequent letter from the Coroner who advised

Further, a leading fibro doctor has written, "What an absolutely terrible thing about Barbara'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 result in more doctors learning 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 symptoms I have had all my life were from this illness. Headaches every day after school from age 5; my sister force fed me whisky as a baby when we were left on our own; I was stung from a blue bottle jellyfish when very young; had to quit sport in my early 30’s due to the back pain but pushed myself for as long as I could because I loved sport; and I've had quite a lot of stress throughout my life. I wonder now, whether these things had an effect or whether I was born with FM. Certainly I had Fibromyalgia from a very early age as I recall those headaches every day after school.

Symptoms

High sensitivity with super sensitive hearing and smell (which are both a curse). I cannot tolerate perfumes (wish it had never been invented) or noise. Dry gritty eyes with blurred vision. Tender places almost the whole body with aching and sore places that move around the body, 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, digestive problems. Suspect I have HG and know I should be on the diet, which I have done lots of times and feel much better on it. Have high cholesterol (inherited). Love chocolate and crave sweet things. Depression and panic attacks. Rarely sleep more than a couple of hours and have broken sleep every night.

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.

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 and 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.

Now 21 months on Guai. Thanks to Jacqui who has made me a 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 experiences. 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’ and that I am not ‘neurotic’ or a ‘hypochondriac’ as some of us fibromyalgics have been labelled. I am a much happier person and everyday, am able to cope with more. I am however, at this point in my therapy, still in a lot of pain most of the time. However, looking at the cyclic changes over the last two years, I do believe this will greatly reduce. At present, I am hoping the tendons and ligaments may be clearing, as I am getting sharper pains in this particular areas.

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 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 in just understanding their condition.

Please email me, especially if you just need someone to talk to.

Sincerely Barbara Stoney Creek. Email - Barbara and your email will be forwarded on.

Click on graphic to join Dr St Amand's GuaiGroup