Pain, especially when it’s continuous, can make even the smallest activities seem gargantuan. But for people with fibromyalgia syndrome (FMS), pain is part of their everyday existence. “There was no place in my body that didn’t hurt. I went from feeling good and normal to hurting all over and being super sensitive to touch,” declares Mary Shomon, a fibromyalgia patient turned health advocate, from Washington, D.C. “In two months, I developed all the tender points. If someone touched my neck, it felt like she was sticking a knife in. Then, a trip to the grocery store felt like a mission to the moon.”
Chanchal Cabrera, author of a book on FMS and professor of botanical medicine at Boucher Institute of Naturopathic Medicine in Vancouver, British Columbia, understands. She describes the pain of FMS sufferers this way: “Imagine that last night you drank two glasses of wine more than you would have liked, but had no water and ate no food,” she says. “You went to bed late and got up early. You are stiff, achy and tired—all the time.”1
For all the pain, however, there is some promising research suggesting that a combination of treatments, including massage therapy, can help sufferers find relief.
Snapshot of Symptoms
FMS is an ordeal of pervasive, widespread and migratory pain and stiffness that strikes muscles and connective tissues, as well as tendons, ligaments, bursae and joints. The intensity varies depending on time of day, activity level, immune status, weather, sleep patterns and stress, and can extend over weeks or months, only to mysteriously improve after awhile.
Up to 90 percent of patients experience chronic headaches, and many have allergies, fatigue, hormonal imbalances, hypoglycemia, nasal congestion, vasomotor rhinitis and neurotransmitter dysregulation.
Almost all people with FMS have weariness, decreased endurance or exhaustion.
Transient cognitive difficulties are extremely common, including difficulty concentrating or engaging in simple mental tasks.
Some researchers say this is the most common, and for FMS sufferers the most bothersome, symptom. This “fibro fog” is marked by feelings of confusion, memory lapse, word mix-ups and concentration diffculties.2,3,4
Because FMS produces no definitive laboratory results, the diagnosis is one of exclusion. When all other possibilities have been excluded, FMS is what is left. The nomenclature is dense and confusing, but FMS is officially diagnosed when the following symptoms are detected5:
- A history of widespread pain in all four quadrants of the body, on both sides and above and below the waist, that is present for a minimum of three months.
- Pain in at least 11 of the 18 identified tender-point sites.
Many FMS sufferers experience their worst pain at several focal tender points, although the pain often radiates so generally that patients may be unaware of their presence until the point is palpated specifically.
On the whole, however, tender points are not very well understood, as defined locations don’t correspond to any particular set of nerve junctions or other obvious body structures, and other areas are often also tender.
Some specialists will make an FMS diagnosis with fewer than 11 tender points if several of the commonly reported associated symptoms are also present.6
Additionally, researchers find low skin temperature, vasoconstriction and hypoxia above tender points, so newer therapies are aimed at these problems.7,8 “Don’t just concentrate on the pain. You need a whole person approach,” explains Dr. Peter Abaci, medical director of the Bay Area Pain and Wellness Center in Los Gatos, California. “Most importantly, how do they function at home? You can’t separate the body from the brain and the mind. The whole brain matrix is involved in the pain—there is no ‘pain center.’”
John Combe, LMT, NCTMB and past president of AMTA’s Oregon chapter, tells us, “As a provider, a big obstacle is that clients have been told that they have fibromyalgia, but their doctor offers them no treatment plan—they have turned off the hope switch.”
The Cause Conundrum
For FMS, there are as many theories of cause as there are researchers. Dr. Jacob Teitelbaum, medical director of the Annapolis Center for Effective CFS/Fibromyalgia Therapies in Maryland, says: “Chronic fatigue syndrome and its often simultaneously present cousins fibromyalgia and myofascial pain syndrome are common names for an overlapping spectrum of disabling syndromes.”
A very common feature in case histories is a triggering event that may be physical, such as whiplash sustained in a car accident. Psychological trauma and viral infections also are common triggers. In one case-control study, 39 percent of FMS patients had significant physical trauma six months before the onset of their disease.9
Teitelbaum cautions that we can’t pin down FMS to any one cause. He focuses on the hypothalamus, and likens the failure of this all important gland to the body blowing a fuse.10 “The result is that muscles shorten and get hard and painful. A muscle is like a spring. It takes more energy for a muscle to relax than to contract. Restoring energy to the muscles gets long-term results and improves all the other symptoms,” he states. “Remember, too, that fibromyalgia includes many other symptoms, such as fatigue, insomnia, spastic colon and sinus congestion.”
Shomon concurs. “It’s key to rule out hormone causes, such as thyroid and reproductive issues, that can trigger or contribute to FMS symptoms,” she explains.
Infections, especially influenza, do occur more often in the histories of FMS patients. The general immune hypothesis posits that “something” goads the immune system into an excessive response state, resulting in increased cytokine production.
A French team reports that a persistent enterovirus infection in muscles may be to blame for some cases of fibromyalgia and other chronic muscle diseases. In 2003, they detected genetic material from enteroviruses in 20 percent of muscle biopsies from patients with chronic muscle diseases, and 13 percent of patients with FMS and/or CFS, but not from healthy volunteers.11
The overwhelming clinical consensus, too, is that FMS is profoundly connected with sleep disturbance in a whopping 90 percent of the cases.12,13,14,15 Both chronic fatigue syndrome and FMS have dysregulated sleep physiology, with increased nocturnal vigilance and light, non restorative sleep.16 These sleep disturbances originate from central nervous system imbalances associated with altered functions of serotonin, substance P, interleukin-1, growth hormone and cortisol.17
Jillian Stansbury, ND, chair of the botanical medicine department of the National College of Natural Medicine in Portland, Oregon, seconds the idea that poor sleep is the biggest contributor to FMS symptoms. Her individualized treatments always include a component, such as gentle exercise, to improve sleep.
Power of Touch
Massage, properly performed, seems particularly helpful in treating fibromyalgia. Patients consistently report that they find bodywork to be the top therapy for providing short-term relief and long-term improvement.18
In an effort to find out just what actually does help people feel better, German scientists took a look at various therapies and concluded that massage was ranked in the top four for patient satisfaction.19
A study in the European Journal of Pain evaluated connective tissue massage. The researchers treated 23
FMS patients and compared them to 23 controls. The subjects received a series of 15 connective tissue massage sessions, which reduced depression and use of pain medication and improved quality of life. The massage benefits gradually increased over the 10-week study, eventually reducing pain by 37 percent. Take note, though, that the patients’ pain had gradually climbed back to about 90 percent of the original level six months post-study.20
And therein lies the problem, as when pain is involved, being consistent can be difficult for some FMS sufferers.
“Therapy should continue for years,” adds Cabrera. “Hundreds of sessions might be indicated, and patient compliance is critical, though difficult to sustain. People know they will eventually feel better, but it might be difficult for someone in pain to get up and make the effort to go consistently.”
Lauren McNeal, an acupuncturist and bodyworker in Annapolis, Maryland, reminds us to be cautious and go slow. “Massage done too aggressively can hurt for three to four days afterward if it’s not in tune with their inner body,” she says.
Regrettably, many FMS patients, for whatever reason, don’t keep up with their massage treatments. One study of long-term FMS patients discovered a sizeable reduction in their use of all forms of hands-on therapy, despite the fact that 85 percent continued to have significant difficulty with their FMS, and 54 percent were taking over-the-counter drugs for pain and 39 percent were using antidepressant drugs.21
Along with massage therapy, a regular exercise routine is absolutely required for FMS sufferers, and many studies confirm the positive results.
Exercise in warm water seems to be particularly beneficial. A recent waist-high warm water exercise study cites long-term lowered pain and increased strength.22 A study published in theJournal of Rehabilitation Medicine found that warm water exercise provided long-term physical and mental progress.23
FMS sufferers often get a lot out of yoga and relaxation techniques, as well. In a six-week randomized pilot study, researchers adapted a yoga program for FMS chronic back pain. The participants demonstrated improved balance and flexibility, and were less disabled and depressed. The group setting encouraged better body awareness and improved relaxation.24
Tai chi can also be a good exercise choice in FMS. Two tai chi classes weekly for six weeks improved symptoms and quality of life for 39 patients in one study.25
Pain, combined with difficult diagnosis and treatment, makes FMS a frustrating disease, to say the least. However, we all have great reason to be optimistic that as we integrate all the developments of recent years, FMS sufferers will one day soon fi nd long-lasting relief.
The Face of Fibromyalgia
About 2 percent of Americans have fibromyalgia now. That’s 4.8 million tired, sore people. Only osteoarthritis is more common among joint diseases.26,27,28 FMS makes up more than 5 percent of the patients in general medical practice, and accounts for 10 to 30 percent of all rheumatology consultations.29,30,31,32
FMS occurs in women of childbearing age at a rate of 7 to 10 times more frequently than men.33 Signs point to FMS being a disease of aging, as well, with only 1 percent of 20-year-old women suffering and more than 7 percent developing the disease by age 70. The median age of onset is 29 to 37 years old, with the median age of diagnosis falling between 34 and 53. During the 5 to 15 year gap between onset and diagnosis, sufferers are often confused, frantic and desperate.
The typical patient is a 40-year-old female with a history of insomnia and a recent physical or emotional traumatic episode. Clinicians also observe that she is dry, thin of frame and cold, with a lifetime tendency toward constipation.
Unfortunately, the difficulty of getting a diagnosis is often matched by the difficulty of being treated. “I met the criteria for a diagnosis of fibromyalgia, but my doctor and physical therapist didn’t really think the official diagnosis was all that critical,” explains Mary Shomon, a Washington, D.C.-based journalist and FMS sufferer.
Whatever they called her condition, however, Shomon understood the chances for progress with conventional medicine were pretty slim.
Cynthia Van Keuren, PsyD, says FMS may benefit from an interdisciplinary approach that includes medication, exercise and relaxation.34 Van Keuren’s team evaluated 178 patients with chronic low back pain, neuropathic pain or fibromyalgia. Regarding self-perceived disability, patients with FMS showed a greater response to treatment.35
“Mind is the most important part of the healing process,” explains Dr. Peter Abaci, medical director of the Bay Area Pain and Wellness Center in Los Gatos, California. “Use massage and other therapies to help develop a healthy life and lifestyle management. Set a path to be as healthy as you can be as you go through the stages of your life. As massage therapists, think ‘My touch will help you feel better immediately—that’s the goal—and then we can do more on the path to keep it that way."
A Massage Therapist with Fibromyalgia
The notion that massage therapy is a demanding profession might escape some of the consumers who benefit from your work, but this fact is seldom, if ever, lost on a massage therapist. Though a diagnosis of fibromyalgia (FMS) might seem like a career-ending moment for a massage therapist, Heather Harris, in private practice near Portland, Oregon, proves it doesn’t have to be.
Harris, a 39-year-old massage therapist and mother of two, began experiencing symptoms of FMS fi ve years ago. “I had two small children and had just been in two car accidents,” she explains. “I received my massage license a year earlier, was working to build my practice, staying up late doing marketing—the stress was just building up.”
Her main symptoms were muscle pain, fatigue, fibro fog and headache. “When I wasn’t getting any better,” she explains, “my problem was identified as fibromyalgia.”
Once she was diagnosed, Harris went straight to work on doing everything she could to control her symptoms, starting with making sure she got eight to nine hours of sleep every night. “I would move to a quiet room to sleep alone,” she explains. “My husband was on baby duty at night.” In three weeks, getting a good amount of quality sleep helped her feel better. Harris also limited her schedule. “I took a maximum of four appointments each day,” she says, “even if that meant I needed to work more days each week.” Letting herself get depleted, Harris found, took three times longer than a normal person to recover from, so she never allowed herself to get run down.
“I find that moderate, regular exercise helps a lot,” Harris adds. “Exercise makes a huge difference in my not having muscle pain.” If she doesn’t exercise for a while, she finds she has an increase in pain when she starts again. So, keeping a routine is important for managing her pain.
Bodywork is also key, but the pressure used is critical.
“I live to receive massage, and I like it deep,” Harris explains. “But deep massage will fl are my symptoms, so I have to have my massage lighter than I used to prefer.” She’s found that hot rock massage works best, and she uses this technique with her clients who have fibromyalgia, as well.
So, has fibromyalgia had an impact on her massage career? Yes. Has the diagnosis ended her career? Most definitely not. Harris has to be diligent about taking care of herself, and has made some lifestyle changes, but she hasn’t stopped practicing. “I’ve been symptom-free for three years,” Harris says. “I still stick to my four sessions per day rule, but it’s definitely possible for me to have an active massage practice.”
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