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,
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
“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
“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.
Dr St Amand’s website:
The UK Guaifenesin Support Group website:
Fibromyalgia Association UK.
0870 220 1232.
Pain in muscles, tendons, ligaments, joints.
Impaired memory and concentration (fibro fog).
Numbness and tingling.
Eye irritation and dryness.
Restless legs syndrome.
Irritable bowel syndrome.
Burning, frequent urination and bladder problems.
Skin problems including itching, rashes, acne.
Vulvodynia (vaginal pain or irritation).
Sensitivity to light or sound.
Depression, anxiety, irritability.