Tired of pain, tired of being tired

Pat, 60, is a home assistant. She can take pain. She had a root canal without anesthetics. A nerve conduction study using needles and electric shocks was a piece of cake, that is, compared to her fibromyalgia.

As a child, Pat had “sinus headaches”; as a teen, painful periods. One time she ended up in the ER for foot pain and swelling. The ER doctor said her “muscles are more sensitive than others.” This explanation stuck because she thought it made a lot of sense.

At 30, she landed a factory job and finally had health insurance. She went from her ad-hoc health advisors – Aunt Chloe and "The Complete Manual of Things That Might Kill You" – to her first family doctor, who put a name to all she’d suffered from. The sinus headaches are migraines; her clicking jaw pain, temporomandibular joint dysfunction (TMD); the bouts of bloating and constipation, irritable bowel syndrome (IBS); chronic fatigue, depression.

Years later, she saw an orthopedic doctor for her back pain. In a pre-clinic screening questionnaire, she was shown a front-and-back picture of a body and was asked to circle all her pain locations. Pat remembered thinking “what the heck” and truthfully circled all her “nonsense” pain areas. At age 40, she was diagnosed with fibromyalgia.

Fibromyalgia, the second most common musculoskeletal disorder, affects up to 8 percent of the population. It’s a unique entity. But I consider fibromyalgia on a continuum of many "centralized pain disorders." First, they share a similar root: a brain that seemingly amplifies pain. Second, the multidisciplinary-treatment approach to fibromyalgia also helps other pain disorders – that I find reassuring.

Other centralized pain disorders – headaches, painful periods, chronic sore throat, painful urination, TMD, IBS – can precede or coexist with fibromyalgia. Like Pat, many end up having surgeries. Three operations later, she still has back pain, which is now considered part of her fibromyalgia. 

Also, fibromyalgia has triggers: PTSD, Lyme disease, rheumatoid arthritis … or Buckwheat, your impossibly cute Pug, who snores like a broken muffler, and is the reason you haven’t slept well in years.

To diagnose fibromyalgia, doctors don’t count tender points anymore. Everybody’s pain is different (deep, dull, numb, swelling, burning). The diagnosis is based on one’s account of widespread pain lasting over three months. Initially, doctors may find arthritis or mildly abnormal lab tests (trust me: you go to doctors, they’re gonna find stuff), but these findings cannot justify the spread or degree of pain. Most have profound problems with sleeping, concentration, memory, mood and fatigue.

Wondering if you have fibromyalgia? To start, try the Patient Self-Report Survey for the Assessment of Fibromyalgia, available online at chronicpainmanagement.ca/md-tools-and-resources.

Pat reports her “hurt seems to be everywhere.” There are days when all she can do is get out bed, and days of “party like it’s 1999.” She’s learned to pace herself, held down good jobs and has a Swiss ball exercise routine that works.

She reminds herself fibromyalgia pain does not cause permanent physical damage. Take luck where you can get it.