| Culture and Chronic Illness |
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| December 2007 | |
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Does culture play a role in chronic illnesses such as fibromyalgia? One woman shares her viewpoint and her journey from debilitating illness to triathlons. Plus, an in-depth look at the disease, the symptoms and the latest treatments.
Minnie Lee, 35, has her theory on why she was afflicted with
fibromyalgia (FM) in her twenties. She was a “total Type A, uber-model Asian
student”: a finance degree from Rutgers, three years as an investment banker in
In 1997, Lee suffered a total system breakdown—she couldn’t digest food for months—accompanied by an outbreak of psoriasis. Next came severe flu-like symptoms and muscle aching that wouldn’t let up. She carried Theraflu with her wherever she went. After two frustrating years of medical examinations only to find nothing suspect in blood tests, X-rays and EKGs, she finally was diagnosed with FM. Like most people, she had never heard of it. Later she would choose a highly unorthodox plan, racing in triathlons, to get better. Patrick B. Wood, M.D., senior medical advisor for the National Fibromyalgia Association, says FM is “based on the presence of chronic widespread pain of at least three months duration, on the left and right side of the body, above and below waistline, so it’s in all four quadrants. It also depends on the presence of these things called tender points—specific places on the body that have been mapped out—that when you apply a light pressure to them the person declares them to be painful.” If a person feels pain in at least 11 out of 18 predetermined tender points (near the neck, shoulders, elbows, lower back, pelvic girdle and knees), in addition to the aforementioned widespread pain, then they can be diagnosed with FM. The average person would welcome a neck and shoulder massage, but for a FM patient, a sudden touch could recoil them into pain. “On a good day, the pain is there but it doesn’t hurt; it doesn’t kill me,” says Lee, “but on a bad day, there’s a fork in there [pointing to her neck] and someone is squeezing it and twisting it all day long. I feel dizzy and woozy like I can’t really see straight. It’s hard to deal with sound sometimes, too.” She also describes a flare-up of pain that feels like a house sitting on her shoulders. There are days when she can’t walk down stairs. The illness is relatively new to the medical scene, having
been given diagnostic criteria by the Besides the widespread muscle pain, other symptoms include extreme fatigue, sleeping problems, headaches and migraines, jaw pain, irritable bowel syndrome, noise and temperature sensitivity, cognitive dysfunction (also known as “fibro fog”), restless leg syndrome and anxiety and depression. Common Western treatments include painkillers, muscle relaxants, antidepressants and now Lyrica ®. After her diagnosis, Lee was at first relieved but then grew pessimistic. She remained bedridden for days, missed work with great frequency and when she could get out of bed, often went out drinking with friends to feel better. “It was a vicious cycle,” she says. “I really didn’t have a reason to get up in the morning.” She tried prescription medicines but none worked for her. The turning point came when she realized how unhappy and unhealthy she had become. She knew she would have to mentally reprogram herself to get better. After much self-reflection, she remembered the high she felt after completing her first triathlon. This unorthodox route would become her passion, her way toward overcoming FM.
Most FM patients would not go into a discipline that could stress out their muscles even more, but Lee feels the opposite. “You get sick anyways, so you might as well have fun and then get sick.” FM affects 6 million people in the Wood describes other precipitators such as environmental exposure, chronic stress, whiplash suffered after a car accident or a bad bout of the flu that a patient never seems to recover from. “We have started to realize that there is more than one way to develop FM and there may be more than one type of FM.” Treatments vary for each person, and many patients have coexisting conditions such as lupus, rheumatoid arthritis, HIV and sickle cell anemia. Lee now receives acupuncture once a week and takes supplements. Other complementary medicine and alternative medicine treatments include therapeutic massage, yoga, tai chi, herbal medicines, chiropractic manipulation, craniosacral therapy and biofeedback. Malcolm Taw, M.D., is an assistant clinical professor at the UCLA Center for East-West Medicine, a clinic that blends the best of Western and traditional Chinese medicine. He says the center is often the “clinic of last resort” after patients have tried everything and gone through the whole UCLA medical network. Acupuncture is one of their main treatments for FM. “Maybe the biggest question with acupuncture is where is the medication? How do you gain a therapeutic effect? We believe all the medications, the neurotransmitters, the hormones, are already in the body, and acupuncture is simply a means of rebalancing and re-regulating those physiological cascades.” There are many different schools of thought about both the treatments for and the origins of FM. “Some people argue that the body is more sensitive in the tissue and some people believe it is in the spinal cord where all the changes take place,” says Wood. “I am in the school of thought that says the changes take place on the brain level.” Since FM does not cause inflammation of tissues, pain comes from how the brain chemically perceives it, he theorizes. And what about Lee’s theory that her Asian background and Type A personality are to blame for her battle with FM? Taw says there is no current research indicating a specific connection to the Asian culture, but he does say that culture and family could play a role if such associations lead to stress, a FM risk factor. Taw also notes that he sees a lot of Type A personalities with the illness. “I think there is a certain personality type that comes with FM like a Type A personality. I see a lot of people who are always on the go, who tend to get stressed a lot.” Whatever the origin, Lee is determined to live well with FM.
She credits the illness with giving her a purpose in life. As part of her
recovery, Lee has become a volunteer with the National Fibromyalgia Association
and was invited to attend their 3rd Annual Leaders Against Pain Seminar in “Something that could have harmed me, has been beneficial for me,” Lee contemplates. It’s my drive to be a better person; it’s my drive to be healthier and to reach out to other people.”
National Fibromyalgia Association - www.fmaware.org Minnie Lee’s blog - www.TriBeyondLimits.com Dr. Patrick B. Wood’s Web site (documentary on FM) - www.lifebeyondpain.com
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“Every time I race I laugh because I’m really slow. I can’t
really go crazy because I don’t want to get sick the next day. I’m going total
turtle pace. All my friends can’t believe it, but they have no idea how slow I
am going. I am the classic example of if I can do it, anybody can do it, and
you can do it better!” She has completed six triathlons over the past two years
and does a mix between Olympic-distance (0.9 mile swim, 26 mile bike, 6.2 mile
run) and sprint-distance triathlons (0.5 mile swim, 13 mile bike, 3 mile run),
usually finishing one-and-a-half hours behind her peers. Her blog, www.tribeyondlimits.com,
shares her experiences with FM and triathlons.
