Make your own free website on Tripod.com

 

Daily Express Article (23 Oct 2001) in unedited form

By Anna Avino

 

For two years mum-of-five Andrea Grimmett was virtually bedridden, unable to perform the simplest task, or care for her family.

The 46-year-old former yoga teacher and stamp dealer from Birmingham has fibromyalgia - a disabling, little-understood syndrome that causes bodywide pain, relentless fatigue, flu-like symptoms, irritable bowel and bladder, migraines, insomnia, numbness and tingling, Raynaud’s phenomenon, weakness, and confusion.

Two to eight per cent of the population are estimated to be affected  - although that could just be the tip of the iceberg. The symptoms of Chronic Fatigue Syndrome (ME) are almost identical and experts increasingly believe they’re the same disease.

Says Andrea: “I’d never really been well and slowly worsened. By the time I crashed, I was in constant pain. I couldn’t get from bed to the toilet, drive or travel. I had panic attacks and was allergic to everything.  I couldn’t cook or clean and my girls had to muddle though.

“I got little understanding from family or doctors. My husband Richard became less and less supportive. He couldn’t understand how I could be so ill when tests came back normal. It was a living hell.”

But for Andrea the worst thing was watching Michelle, now 22, Tammy, 19, Chloe, 13, Abigail, 11, and 10-year-old Alexandra succumb to the disorder.

“By the time I was bedridden, Chloe and Abigail were in pain and had IBS. Tammy was hospitalised with muscle spasms, severe IBS, vomiting and fatigue. She was in bed four days out of seven.  Abigail has always been brain-fogged, had unbelievable rashes, sores, and incredible growing pains - the same misery I’d endured all my life,” Andrea adds.

The WHO recognised and classified fibromyalgia in 1993, yet eight years later many UK doctors have never heard of FMS or refuse to believe it exists.

It’s been blamed on faulty pain perception, lack of deep sleep, infection and hormonal abnormalities, but researchers have failed to identify a cause, so there’s no lab test - and no cure.

Conventional treatment includes anti-depressants for insomnia, pain killers, thyroid medications and exercise, which sometimes masks some symptoms but are sadly, all too often, ineffective.

Yet two years after being diagnosed and told her condition was incurable, Andrea’s made an incredible recovery, thanks to guaifenesin, an expectorant commonly found in cough mixtures, that’s increasingly being prescribed as a treatment in America.

The drug, which is cheap and has no known side effects, is taken twice a day in tablet form and patients have to avoid salicylates, present in many toiletries and supplements, which prevent it working.

“Now I run everywhere, decorate, run a home and business, garden, work until midnight. There’s nothing I can’t do,” Andrea says.

Scouring the internet, she came across a 2,000-strong international internet support group for patients on the drug treatment, developed by US endocrinologist Dr Paul St Amand.

He, and now some 300 other doctors in the US, are certain it reverses the disease. A former sufferer himself, he’s treated 10,000 patients over four decades, using guaifenesin since 1992.

He believes fibromyalgics’ bodies retain excess phosphates and tuck them away inappropriately, along with calcium, into cells. This leaves muscles in a constant working state, and prevents the body’s energy factories (mitochondria) from producing ATP (energy).

At first symptoms are mild, with long respites between attacks. But in time, once more of the body is affected, all symptoms become permanent.

He believes guaifenesin allows the body to excrete those phosphates through the urine, gradually returning cells and tissues to normal.

However, the treatment is controversial - in 1993, a double-blind study of 40 patients failed to reproduce his successes, which were then written off as due to the placebo effect.

Says Dr St Amand: “The clinical trial failed from my own ignorance about the ease with which salicylates are absorbed through the skin. We were shocked to learn all plants make salicylates and at around the time of the trial there was a large increase in their use in topical preparations. We’ve since witnessed countless blocks from minted or salicylate-laden toothpastes and toiletries, and even gardening barehanded.

“But we’ve refined the treatment as our knowledge has improved and are better at recognising and avoiding salicylates. Any placebo effect ends after three months - guaifenesin’s a long-term treatment.  Most patients have never seen me and  improve when they follow the treatment properly alone.

“Like all new approaches, time will tell. We stand firmly by our statements: regardless of cause, we have a treatment.” stresses Dr St Amand.  “I’m certain we can reverse the disease in more than 95 per cent of patients following the protocol properly.”

Andrea explains: “Despite the failed trial, thousands of patients were taking guai when I found it. They were reporting relief from symptoms and gradual recovery. I had nothing to lose. I was getting worse and no-one here could help.”

“Guai was a miracle. Within 20 minutes of taking it I knew  something was happening. I woke the next day, pain free for the first time in 20 years. I couldn’t believe it,” says Andrea who put four of the girls on it a couple of months after she began.

“It took months for us to see consistent improvements, but we did. Dr St Amand says there’s an initial worsening of symptoms then eventually you get good hours, days, then months as symptoms gradually disappear - and that’s exactly what has happened.

“After two years, I’m 80 per cent better. Tammy’s at university. Chloe’s thriving. She’s a member of a choir and youth repertory theatre.  She does a daily paper round, two hours’ homework and has a social life. Now we’re seeing glimmers of the old Alex too. The girls now hardly have a sick day between them,” Andrea adds.

Although not available on NHS prescription, the tablets are now on sale here thanks the efforts of the UK support group Andrea set up a year ago to help British sufferers find the treatment that’s changing lives.

New members join the group almost daily. Almost 100 people are now going it alone here and recovering. One by one they are educating their GPs and consultants about guaifenesin and the website is getting 1,000 hits a month.

“I started the UK group because I was lonely with my disease. I knew there must be loads of people in my position and wanted them to know there’s an effective treatment” Andrea says.

“I’d love to see understanding and support from the medical profession, but the group’s there in the meantime.  To me, guaifenesin is vital. No-one’s going to stop me taking it - it gave me back my life.”

Because generally so little information is available and unknown numbers remain undiagnosed or misdiagnosed, an All Party Parliamentary Group is being relaunched on October 23 to promote awareness and research into the disease, and iron out inconsistencies in benefits.

Says Chairman Dr Nick Palmer: “The NHS recognises FMS but a lot of doctors have difficulty keeping up to date so sufferers are having trouble getting the right medical advice or disability benefits.”

Adds Dr Jon Raphael, consultant at Dudley Pain Management Centre which sees FMSers from around the country and overseas: “Fibromyalgia is medically unexplained, which is why I think most medical people aren’t interested. Doctors are trained to cure not care. This causes considerable distress and suffering.”

 “I think it’s appropriate people try new things. As there’s no cure, it’s reasonable to give things a go,” he says.  “Whilst I support patients in trying alternative remedies I tell them we have no good evidence for guaifenesin but it may help so a short trial is reasonable,” he says.
 
Says Bob Stewart chairman of the Fibromyalgia Association UK: “Sufferers spend fortunes on things that don’t work. Doctors in the US are prescribing guai because it’s getting results. Even if there’s currently no scientific proof, if something works and isn’t dangerous then it has to be worth a go.

“We’re reluctant at present to say it’s a cure, but it may be an effective treatment. Epileptics have no problems if they take their medication - if it cures all the symptoms, does it matter if you have to take a maintenance dose?” Bob adds.

MORE INFORMATION ON FIBROMYALGIA AND GUAIFENESIN
What Your Doctor May Not Tell You About Fibromyalgia, by Dr R Paul St Amand.
www.amazon.co.uk

Dr St Amand’s website:
www.guaidoc.com

The UK Guaifenesin Support Group website:
WWW.geocities.com/UKFMSGUAI

Fibromyalgia Association UK.
0870 220 1232.

COMMON SYMPTOMS
Pain in muscles, tendons, ligaments, joints.
Stiffness.
Fatigue.
Insomnia.
Impaired memory and concentration (fibro fog).
Numbness and tingling.
Tinnitus.
Muscle cramps.
Palpitations.
Headaches.
Dizziness.
Eye irritation and dryness.
Restless legs syndrome.
Irritable bowel syndrome.
Burning, frequent urination and bladder problems.
Skin problems including itching, rashes, acne.
Growing pains.
Vulvodynia (vaginal pain or irritation).
Sensitivity to light or sound.
Depression, anxiety, irritability.
Brittle nails.

 

Website created by Jo Gallagher on behalf of the UK-FMS-GUAI discussion group.
The website is checked periodically to ensure that it is working properly. If you do encounter any difficulties, including broken links, then please email me. Jogallag @ hotmail . com
 
Copyright © 2007