Fibromyalgia/CFS patients fighting for awareness of career-ending illness

Peter Dawe says fibromyalgiaand chronic fatigue syndrome diseases that can causedebilitating exhaustion, joint and muscle pain havequietly stalked him since his 20s.

It started as a grogginess he thought was caused by hard work orlack of sleep.

The disease's career won out.- Peter Dawe

But during the 16 years he was the director of the Newfoundland and Labrador chapter of the Canadian Cancer Society it got progressively worse.

"This was deep. This is in your bones. I just couldn't function physically," said the 57-year-old.

He fought back and after leaving the Cancer Society more than a decade ago he becameprovincial candidate for the district ofTopsail, but in2010 he quietly bowed out, citing health reasons.

"I had a career and the disease had a career and the disease's career won out," he said.

Not taken seriously

Dawe says that along with hissymptoms, he was fighting the stigma fibromyalgiaand chronic fatigue syndromecarry and the grinding doubts of many people, even members of medical profession, who questioned if his illness was real or "all in his head."

"You end up being so frustrated, so down on yourself, that you don't talk to anybody. You stop going to professionals because there is no answer and the more you go, the worse you feel," he said.

"You get beaten down. Lots of times you end up quitting and you back out."

Affects differentpeople differently

Chronic fatigue syndrome hasrecently also become known asmyalgicencephalomyelitis or ME. It has many of the same symptoms as fibromyalgia.

Some patients have symptoms of both chronic fatiguesyndrome and fibromyalgiaand use the terms interchangeably but many believe fibromyalgiaand chronic fatigue syndrome are distinct conditions. They say fibromyalgiapatients are more likely to have chronic pain and chronic fatigue patients are more likely to have debilitating exhaustion.

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Chronic fatigue syndromeaffectspeople differently. Some cases are mild, but in severe cases it leaves patients unable to get out ofbedfor months or even years.

The causeremainsunknown and these conditionsaredifficult to diagnose.Dawe saidhe had to fight fortreatment becausevery few doctors in Atlantic Canada are knowledgeableabout the conditions.

From triathleteto traumatized

One Canadian activistwho's fighting for more research money and greater awareness ofmyalgicencephalomyelitissaidhis experience with medical system wastraumatizing.

Torontonian Scott Simpson was a triathletebefore he became sick. He's lived with HIV since the late 1990s, but his experience with the medical system didn't prepare him for becoming sick.

"It was traumatizing. In the context of HIV there is lots of support, there is a lot of support and there is lots of research funding. On the other end of our health care spectrum there is M.E.," says Simpson, a M.E.patient advocatewith a group called Millions Missing Canada.

"I could count the number of M.E. doctor in Canada on one hand."

St. John's physician says tide is turning

Dr. Pradip Joshi, an internal medicine specialist in St. John's, says more members of the medical community are accepting that fibromyalgiais real.

"There are physicians who believe that this is a true entity and there are others who believe that this is a psychosomatic disorder. Lately, especially in the last five to 19years, it is obvious that this is a clearly recognized condition," Joshisaid.

Joshi believes more must be done to educate physicians and patients

"There are pharmacological as well as non-pharmacological treatments. Now that we have better criteria and better knowledge of this disease it is much easier to formulate a plan of treatment."

Prevalence unknown

The Newfoundland and Labrador Centre for Health Information saidthat in the past five years,68 people with fibromyalgia havebeen hospitalized. It saidprovincial Medical Care Plan (MCP)coding doesn't capture if a patient visitsa doctorforfibromyalgia.

Dawe and Simpson believethe true number of people dealing with fibromyalgia/chronic fatigue syndromeis much higher.

They describe it as an "epidemic" affecting half a millionpeople across Canada andthousands in Newfoundland and Labrador.

"The numbers now are starting to become apparent and it's startling. Stats Canada from 2015, over a half a million Canadians self-identify with fibromyalgiaand chronic fatigue syndrome," said Dawe.

"You are probably looking at thousands of people in Newfoundland and Labrador who have this condition but there are not getting treated by the medical system. They are not being recognized by the system."