Support Groups for Fibromyalgia Patients

There was a time when fibromyalgia was thought to be psychosomatic. We now understand that fibromyalgia is caused by a process in the central nervous system in which pain sensations are amplified by a complex neuroendocrine process. In addition to pain, there are numerous symptoms that fibromyalgia patients present:

• Sleep disturbances/frequent waking/nonrestorative sleep
• Widespread aching and pain
• Gastrointestinal symptoms
• Temporomandibular joint pain dysfunction
• Headaches
• Impaired memory and concentration
• Allergies
• Anxiety
• Insomnia
• Fatigue
• Cognitive impairment
• Hypersensitivity of the body and swelling of tissues
• Adverse reactions to bodywork
• Difficulty or inability to tolerate physical activity.

Symptoms range in severity, and can impact the ability to function at work and at home. Therefore, it is essential that fibromyalgia patients find effective treatment.
These symptoms are triggered by stress, repetitive motion, foods, medication, caffeine, alcohol, certain mattresses (supportive coil mattresses), poorly designed chairs, the wrong pillow, tight clothing, stress from sitting at a computer, travel, changes in environment, changes in weather and physical trauma, such as a car accident. Patients report that everyday activities such as lifting a jar or putting away groceries can trigger muscle fatigue and pain. Associated functional medical conditions, such as carbohydrate intolerance, leaky gut syndrome, adrenal dysfunction, systemic yeast overgrowth and reactive hypoglycemia, also play a role.

Confusing Healthcare

Many patients are bewildered by standard healthcare options. Fibromyalgia patients often present with multiple symptoms and can be on multiple drugs per symptom. It is this cycle that leads patients to seek complementary and alternative care. One patient described feeling like a guinea pig trapped in the healthcare maze: He sought treatment from numerous practitioners, including rheumatologists, internists, neurologists and endocrinologists. But the response is often abrupt and dismissive, especially when traditional work-ups come back negative.

Fibromyalgia can dominate a patient’s life, create great stress in his or her family and work life, and make him or her feel alienated from society. The symptoms are so seemingly unrelated and so nonspecific that family, friends, coworkers and healthcare providers often misunderstand these patients. This misunderstanding is a great source of distress and hopelessness. As a chronic illness, fibromyalgia prevents patients from leading a normal life. They spend much of their time trying to manage symptoms and finding enough energy to cover up how badly they feel. These patients need comprehensive healthcare to address the condition. We found that an integrative treatment approach, including Western and complementary and alternative medicine (CAM), and a support group, provides the best opportunity for improvement in the quality of life for fibromyalgia patients.

Fibromyalgia Support Group
Since our practice has many patients with fibromyalgia, we identified the need for a local support group, and organized a monthly group at our offices.
Group Structure

• Group members and guests wear name tags with their first name and sit in a circle.
• The group begins with introductions and progresses to problems common to coping with fibromyalgia.
• Most important is that members provide support, information, reassurance and encouragement.
• The guest speaker gives a 15-20-minute talk.
• The speaker offers a Q&A session after his or her presentation.
• The leader provides closing remarks.
• The leader initiates guided relaxation.
• The session ends with social time.

Role as Group Leader

• Provide supportive atmosphere for coping and learning
• Start the group process
• Guide the discussion
• Deepen the discussion
• Foster the relationships and interaction
• Distribute information from Massachusetts CFIDS society
• Listen without judgment
• Provide feedback if needed
• Provide clear guidelines for confidentiality to the public.

We advertise the support group to the public through our offices, Web sites, newspapers and other Web spaces. Attendees are encouraged to bring guests and supporters. Guest speakers are invited to speak on a range of subjects, from healthcare and legal issues to cooking and yoga. The group often requests the topics. A special yoga class was also developed at the request of group members.

Group members express profound relief at finding a resource for help in an empowering atmosphere. The group also provides compassion and understanding, and helps counteract the social isolation commonly experienced in patients with fibromyalgia. People find the shared experience of the disease and the group support comforting. The group feedback often inspires patients to make changes, seek additional help and, ultimately, heal.

Support groups can provide the missing link for patients with chronic illnesses. They encourage people to take control of their lives and their treatment in a safe and healing environment. As practitioners, it is important to provide this service or find local resources for support groups. As support group leaders, practitioners become more educated and better able to serve patients. CAM providers have many of the tools, including knowledge and compassion, necessary to address complex illness. Building bridges with allied health professionals ultimately provides the glue that propels patients’ healing.

Julie Wiener, ND is licensed in Vermont, and is an associate adjunct professor at Massachusetts College of Pharmacy and Health Sciences (MCPHS). She currently maintains a private practice in naturopathic medicine, and teaches non-herbal dietary supplements and functional medicine at MCPHS. She frequently speaks to the public and writes on the subject of utilizing and integrating alternative and conventional medicine in a safe medical setting. She received her bachelor of science degree with honors in 1994 from the University of Massachusetts in Amherst, with a focus in environmental toxicology. In 1998, she received her doctor of naturopathic medicine degree from Bastyr University.

Mitchell Simon, DC is licensed in New York, New Jersey, Illinois and Massachusetts. He has been in private practice for 23 years in the greater Boston area. He graduated from the State University of Albany in 1979 with a bachelor of arts degree; and from the National College of Chiropractic in Lombard, Ill., with a bachelor of science and doctor of chiropractic in 1983. Dr. Simon is board certified by the National Board of Chiropractic Examiners. He has been an active member of the Massachusetts Chiropractic Society and the International Chiropractic Association for 23 years.

Case Study
James, a 32-year-old male, was diagnosed five years ago with fibromyalgia. Like many patients with fibromyalgia, he appeared to be in perfectly good health, physically fit and in no apparent distress. When he joined our support group, he was experiencing difficulty at his job as an interactive designer, was showing more signs of stress and unhealthy coping strategies, and was withdrawing from everyday activities. At the start of the group, he was being treated with prescription medication for allergies, asthma, sleep problems, pain, depression and anxiety.

Once the group focused attention on his situation, several members helped him to see that he was in a crisis and that a healthy intervention was needed. With the group’s help, he came up with a plan of action. He decided to take a leave of absence from his job and temporarily move in with his parents. He began naturopathic care at our office, and continued to see his chiropractor (co-author Dr. Simon), along with his allopathic physician and psychiatrist. This integrative approach allowed him to return to work after six months of treatment and to achieve a greater and more consistent quality of life.

Naturopathic and Chiropractic Care
The naturopathic approach began by identifying and removing the obstacles to cure. The initial treatment plan focused on helping him, with the support of his primary care physician, to eliminate any unnecessary medications and stabilize his blood sugar. This allowed a clearer picture to emerge. Later, we worked on remaining symptoms with naturopathic treatment and mind/body techniques.

Initial Treatment Plan

1. Nutritional consultation on whole foods, allergy elimination and blood sugar balance.
2. Natural supplement with quercetin, bromelain and vitamin C for allergies.
3. Natural supplement for liver/GI/detox.
4. Fish oil to lower inflammation and support blood sugar balance and cognitive function.
5. Withania somnifera tincture: before bed for sleep support.
6. Mind/body techniques to minimize stress: breath work, journaling, yoga.
At the first follow-up visit, James had stopped all prescription sleep and allergy medication. He limited his asthma medication and stopped drinking alcohol and coffee. He was sleeping better, and had greatly reduced allergy and asthma symptoms. Overall, he reported fewer symptoms and a better state of health. At this time, we addressed more fatigue and generalized muscle pain.

Second Treatment Plan

1. More coaching on journal writing and self-care techniques. Discussed personal triggers for stress in daily life, work and relationships.
2. Added Cordyceps sinensis for adrenal support, energy and lung support.
3. Added amino acid blend to address muscle pain.
4. Continued initial treatment plan.
The patient was also concurrently under chiropractic care with the following techniques:
• Spinal adjustments with an instrument that produces a succession of rapidly repeating, high velocity-low amplitude thrusts, which works to restore the natural feedback cycle of the nervous system. These adjustments also stimulate proprioceptors and mechanoreceptors without stimulating nociceptors and are without trauma or a rebound effect.
• Soft tissue manipulation/trigger point therapy to reduce myofascial pain.
• Extremity adjustments and joint mobilization to alleviate chronic rib, elbow, intercostal and hip pain.
• GRT Light: Light therapy.
• Adjunctive therapy with ultrasound, EMS and diathermy.
• TMJ night guard to protect the jaw from excessive clenching.

Follow-Up
Over the next six visits, James became able to identify his specific triggers of pain, muscle tension, depression and cognitive dysfunction, and was for the most part able to avoid them. He tolerated a low-impact exercise program, including use of a stationary bike and weight training. He eliminated more pharmaceutical medications for muscle pain and depression. He became able to manage day to day with only the occasional low dose of anxiety medication. He arranged a modified work schedule with his employer that minimized physical stress. He also modified his work station to support ergonomics.
One year after he began naturopathic and chiropractic care, James was still employed at his job and had maintained good health.

References
Yunus MB: Fibromyalgia and overlapping disorders: the unifying concept of central sensitivity syndromes, Semin Arthritis Rheum Jun;36(6):339-56, 2007.

Glass JM: Cognitive dysfunction in fibromyalgia and chronic fatigue syndrome: new trends and future directions, Curr Rheumatol Rep Dec;8(6):425-9, 2006.

Lind BK et al: Use of complementary and alternative medicine providers by fibromyalgia patients under insurance coverage, Arthritis Rheum Feb;57(1):71-6, 2007.

Russell IJ et al: Treatment of fibromyalgia syndrome with Super Malic: a randomized, double blind, placebo controlled, crossover pilot study, J Rheumatol May;22(5):953-8, 1995.

Wingenfeld K et al: The low-dose dexamethasone suppression test in fibromyalgia, J Psychosom Res Jan;62(1):85-91,2007.

Van Houdenhove B, Luyten P: Stress, depression and fibromyalgia, Acta Neurol Belg Dec;106(4):149-56, 2006.

Starlanyl, DJ and Copeland, ME: Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd ed), Oakland, 2001, New Harbinger Publications.

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