Lisa Hansen is searching for strength in numbers and peer support in a battle with fibromyalgia.
According to the world-famous Mayo Clinic, fibromyalgia is a disorder characterized by widespread musculo-skeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that the disorder amplifies painful sensations by affecting the way the brain processes pain signals. Symptoms sometimes begin following physical trauma, surgery, infection or significant psychological stress.
For Hansen, a Highlands resident who was diagnosed with fibromyalgia five years ago, a seven-month period of work-related stress six years ago proved to be the trigger. “I got a virus that left me almost bedridden for four months,” said Hansen, a support worker for parents of children with mental health issues for 17 years. “I’ve dealt with more than my share of health issues, but always managed to fight back.” That included treatment for scoliosis in her teens, which required her wearing a back brace for two years. Fibromyalgia, however, is a constant struggle, robbing her of energy, a feeling exacerbated by a constant, dull, aching pain.
One of the frustrations related to fibromyalgia is that it is difficult to diagnose, Hansen said. There are no blood tests, and it can sometimes be related to other conditions such as osteoarthritis, rheumatoid arthritis or lupus. It also tends to run in families, and there may be certain genetic mutations that make people more susceptible to developing the disorder. She tried acupuncture, massage and chiropractors for four or five months, without much success or relief.
Hansen finally found out she had the disorder through a process of elimination that included consultations with a host of specialists. “My doctor explained that there are quite a few Olympic athletes who deal with fibromyalgia, and only a few people go into remission. I feel like I’m a strong person and I’ll beat this but five years later, there’s no end in sight.”
That’s part of the motivation driving Hansen’s efforts to launch a peer support group in the Victoria area for people dealing with the disorder. “I was in a peer support group for parents dealing with children’s mental health issues for many years,” she explained. “I know how isolated and lonely people dealing with that can feel. There are similarities because fibromyalgia is an invisible disease as well. There used to be a peer support group in Victoria for a number of years, but it closed down. I know that organizing a group like that takes a lot of work and people burn out. My goal is to start a group and ideally get enough people involved so that we can share the workload and not put all of the burden on one person.”
Hansen knows what a difference support from others can make. Her sister, Lori Ash-Root and her son, Ryland, recently took part in the Lake to Lake Walk and Marathon and chose fibromyalgia as their charity of choice. They raised $300, which they donated to MEFM Society of BC, which supports people dealing with fibromyalgia and chronic fatigue.
“It reinforced for me that there are people out there who are managing their symptoms and dealing with the same issues you are. I’ve seen the benefits of peer support first hand.”