PHOTO BY NICK ZACHARIAS
A group of members from the AFSFC-VS participate in a creative journal session, one of many bilingual activities offered to give members a chance to get together and share their successes and their struggles with the widely misunderstood condition.
Fibromyalgia is a painful, debilitating, and poorly understood condition made all the worse by the fact that it can be as difficult to treat as it is to diagnose. There is no cure for it and no definitive test. Yet it affects about 900,000 Canadians and can impact an estimated two to 10 per cent of the population. That’s as many as five times the number who have rheumatoid arthritis yet those with fibromyalgia often suffer in the shadows.
What is it exactly?
According to Anna Maria Westcott, Vice President at the Association de fibromyalgie et du syndrome de fatigue chronique de Vaudreuil-Soulanges (AFSFC-VS), it’s known as the ‘invisible disease’ because it leaves no outside marks but can cause tremendous pain and fatigue. “Some people say it feels like a really strong case of the flu, like one of the bad 10-day versions, except it just goes on and on. You get diffuse pains in your joints, muscles, or head and they can move from one place in the body to another and can vary widely from day to day.”
Says Chantal Bergeron, co-ordinator at AFSFC-VS, “Other symptoms can be chronic fatigue, stiffness, irritable bowel, vision problems, ‘brain fog’ or cognitive problems, concentration problems, headaches, numbness or burning sensations, and more. It affects different people different ways, and it changes daily depending on sleep, the weather outside, hormonal activity, or stress or anxiety levels – the list goes on.” Because the symptoms are always changing, it becomes not only difficult to plan for the future but sometimes even to leave the house or get out of bed. In many cases sufferers struggle to keep employment because their pain levels are too unpredictable.
How do you know if you have it?
“It can be really hard,” says Bergeron, “because the pain and other symptoms change. People can sometimes go through a lot of different doctors before they figure it out.” Symptoms are so variable that people often don’t know what the problem is. “The worst part, in some ways worse than the pain, is the doubt. It’s people who don’t understand who make you feel like the problem is all in your head because there’s nothing on the outside that you can see.” Some days are worse than others but according to Bergeron, “…if you’ve had chronic pain for more than three months, if the Tylenol you’ve been taking like candy isn’t working,” it’s time to consider that it might be Fibromyalgia.
The condition affects far more women than men, usually presents more prominently between the ages of 30 to 50, and can be brought on or triggered in ways that are not fully understood.
“It can come on after a trauma like a car accident or a cardiac event,” says Westcott. “We see people who trace it back to a childhood trauma like abuse or the death of a parent, or we see it in people with post-traumatic stress disorder.” She likened it to the body ‘remembering pain’ so that pain signals are amplified in the nerves. She says there are ongoing pain studies being done at the University of Montreal and a study happening at McGill where subjects ingest microbots to investigate the link between intestinal health and Fibromyalgia, but more research is needed.
Ways to cope
Pain medications can help, though opioids have obvious downsides, and there are patients who have found success with antiepileptic medications as well as CBD oil and other treatments. At AFSFC-VS they bring together members to share experiences, successes and struggles, and to help each other feel less alone. The difficulty of finding ways to get through daily activities while coping with chronic pain can lead to depression, sleep loss and other medical issues, but even having someone to share with can help.
“For a $25 membership we offer a full calendar of events in Vaudreuil-Dorion and Pincourt, including group therapy, coffee get-togethers, adapted yoga, therapeutic cooking (for a small extra charge), creative journal sessions, mini conferences, and coming up in March we’ll have aqua-fibro classes at the John Abbott Pool,” says Bergeron. Get in touch with the Vaudreuil-Dorion centre or visit www.afsfc-vs.org to learn more.