Ellen Pickett suffers from fibromyalgia, chronic fatigue syndrome, and multiple chemical sensitivities, three illnesses which often strike together. She wears a respirator every time she leaves the house.
The instructions are explicit.
Before agreeing to be interviewed, Ellen Pickett asks that the reporter refrain from using any perfumed products and wash her clothes in special, unscented laundry detergent. Dryer sheets are out of the question, and hair is to be tied back or held under a scarf or kerchief.
Pickett, 54, suffers from fibromyalgia, myalgic encephalomyelitis — better known as chronic fatigue syndrome — and multiple chemical sensitivities or MCS.
Fibromyalgia is a chronic disorder characterized by widespread musculoskeletal pain, fatigue and tender points. Chronic fatigue syndrome is a defined as pathological exhaustion that cannot be reversed by rest. Seldom are the conditions suffered in isolation.
Once stricken with fibromyalgia, chronic fatigue syndrome and MCS are not far behind, as the illnesses are insidiously intertwined. In Ontario, 440,000 people — 80 per cent of whom are women — suffer from either one or a combination of these illnesses.
For Pickett, the pain came first.
“My hands felt like they were on pins and needles,” she says through a respirator. “My shoulders and upper back feel like someone hit me and there’s a huge amount of pressure on my lower back.”
Chronic fatigue and MCS came to her later, forcing her to don a dual-filter, industrial respirator every time she leaves her Toronto home.
Patients like Pickett are routinely dismissed as head cases by the public and physicians alike. But it’s an attitude that stems from widespread ignorance, a lack of awareness and an invisible population of sufferers, says Dr. Alison Bested, one of the few specialists in Canada and author of Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia. Unlike cancer or AIDS, which boast powerful lobby groups and advocates, fibromyalgia and its “sister illnesses” have no champions, says the hematological pathologist and doctor at Women’s College Hospital’s Environmental Health Clinic.
“These patients are severely disabled. They don’t have the energy to lobby and make this known,” she says. “They’re much sicker than AIDS patients as 50 per cent are housebound and bed-ridden. It’s an invisible illness. People may not be dying of this, but they lead long, difficult lives.”
What few people realize — and what makes fibromyalgia distinctive — is that oftentimes the illness can be traced back to a single traumatic event to the body, like a car accident and severe whiplash, Bested explains.
When whiplashed, for example, the brain gets “rocked” back and forth against the skull. “And that seems to be the set-up.”
Brain neurons, or fibres become stressed and torn at a microscopic level. Pain in the head and neck generalizes to the rest of the body. The brain then starts to recruit more neurons or cells to feel pain, so that pain signals get larger.
Where, in a normal person, for example, only one part of the brain lights up when pinched, the entire brain lights up in a fibromyalgia patient, as pain is amplified. Fibromyalgia is diagnosed through a physical exam: People who feel pain when pressure is exerted at 11 of 18 sites identified as tender points are duly diagnosed.
Pickett believes her fibromyalgia was triggered after falling down the stairs at the age of 33. No bones were broken, but she suffered injured discs.
“As time went on, more and more parts of my body were hurting,” she says. “Initially the pain was in my lower back, but it spread to my hips, neck, back and head.”
The pain signals vary, she says. Sometimes it’s a dull, relentless pain; then it switches to a shooting pain. And at other times, it feels like she’s bruised all over.
“A tap on my arm could hurt.”
But beyond the pain, the more devastating side effect for Pickett is the “brain fog” that often accompanies fibromyalgia and chronic fatigue.
Before falling ill, Pickett was a senior financial analyst with what is now Ontario Power Generation, crunching numbers that involved millions of dollars. Her job entailed preparing budgets and forecasts for the province’s nuclear operations, a stressful position that required complex reasoning and analysis. With time, her energy and cognitive skills began dropping to alarming, nonsensical levels: Suddenly she forgot how to prepare simple spreadsheets and couldn’t remember numbers she prepared herself.
“People I was working with weren’t happy with me because I wasn’t pulling my weight.”
Eventually, mental fog degenerated to levels where now, she no longer has the cognitive skills to drive short distances. She’s forgetful and is constantly losing things. Her conversation is frequently stunted, as she often pauses to search for her words.
Sleep is likewise stunted. While she may get a full night’s rest, people who suffer from chronic fatigue are unable to slip into the stage of restorative, replenishing sleep that’s needed to perform throughout the day. Like fibromyalgia, chronic fatigue often develops as a result of a complication from an external trigger, like a viral infection from flu season, Bested said.
“This is a pathological disability,” she says. “To get out of bed and open a can of soup is like moving a mountain.”
Likewise, multiple chemical sensitivities develops after prolonged exposure to chemicals, says Riina Bray, medical director of the environment clinic at Women’s College Hospital. Fumes from markers, for instance, can set off teachers, while cleaning agents in hospitals can provoke health-care workers — but not everyone reacts the same way.
“There’s a huge genetic component to this,” she says. “Some people can get off scot-free.”
Together, these complex, multi-faceted illnesses conspire to wreak havoc with the body’s neurological, immune, and hormonal systems, she said.
“Everything is skewed and gets thrown off.”
When the body is stressed, she explains, it releases cytokines or inflammation mediators, which exaggerate pain and throw off the autonomic system which regulates everything from the heart, the bladder, blood pressure and body temperature.
“The more pain you have, the more stress on the body, and the more cytokines are released. It’s a vicious cycle.”
For Pickett, it’s not the pain that ails her most, she says. It’s the chemical sensitivity that limits her mobility and the steep cognitive decline that cost her her job. She misses being able to go to the movie theatre or out to a restaurant with her husband. Her degenerative health thwarted the couple’s plans to have children. And her mental fog has stripped the once bright, self-described “Type A career woman” who had an engineering degree and an MBA, into a weak, frail version of herself.
“With the pain and fatigue, as long as I could be useful at work I dragged myself to work,” she says. “I took pride in being good at something.”
Many of the women struck by this degenerative illness share Pickett’s profile: Prior to their decline, they were productive, busy, go-getting, active and even athletic career women felled by a trio of decapitating illnesses.
And while unscientific, Bray hypothesizes that the conditions are brought on in part by the mounting burdens women are made to carry.
“We’re caring for our house, our children and our sick parents. The expectations for women are absolutely ridiculous,” she says. “Women need to rest but they don’t. The pressures on women is just ridiculous. We have to be it all and it’s just garbage. No wonder we’re crashing and burning.”