Connective Issues Fall 2018

EHLERS DANLOS SYNDROME

AN INSIDE LOOK: FIBROMYALGIA By Bob Graybill; Reviewed by Dr. Juan Bowen, Professional Advisory Board, The Marfan Foundation

Treatment for fibromyalgia The treatments for fibromyalgia are wide ranging and should be individualized. Because fibromyalgia is a complicated dis- order with its roots in the central nervous system, relaxation techniques are very helpful. Physical activity, breathing exer- cises acupuncture, yoga, and meditation have all been found to be helpful. Achieving a healthy weight through appropriate nutrition can help keep fibromyalgia symptoms under control. Moder- ate exercise prevents deconditioning and boosts mood and energy. Sleep apnea exacerbates fibromyalgia; therefore, finding and treating sleep apnea results in improved rest and nervous system function. Is it important to avoid pitfalls in pain management. Opiate medications are often unsafe and ineffective treatment, and they can be addictive. Doctors may prescribe medications focused specifically on nerve pain. They may also prescribe SSRI medications. These drugs are also used in treating depression and anxiety, two conditions often associated with fibromyalgia. The combination of non-drug treatment and judicious use of medications is often successful. The challenge of having an invisible illness People with fibromyalgia often do not look ill so they are frequently misunderstood. Susan stated, “I would like others to know that despite being invisible, my condition is very real and so are the symptoms that come along with it. Everyone should stand up for themselves and what their body needs, even if they encounter push-back.” Ashley Sulek, of Maysville, WV, who has EDS also knows what it’s like to suffer from fibromyalgia. She wants people to know that “just because someone looks fine on the outside, doesn't mean they aren’t suffering on the inside. Chronic illness never goes away, it’s a 24/7 battle.” If you feel you may be suffering from fibromyalgia, reach out to your health care team and begin the process of getting a diagnosis and starting treatment. Bob Graybill is a naturopathic doctor practicing primary care at Vitality NW in the Portland (OR) area. He is passionate about helping individuals with Marfan syndrome and other connective tissue issues because of his experience with his daughter, wife, and extended family’s Marfan diagnoses. Bob is a member of the Foundation’s Marfan Writing Group.

Fibromyalgia affects about 10 million people in the US, according to the National Fibromyalgia Association, and it is very common in people who have Ehlers Danlos syndrome, one of the conditions related to Marfan. Though the impact on an individual can be severe, fibromyalgia is difficult to explain. Still, it’s important to understand it because, as Josephine, of Omaha, NE (who didn’t want her last name used), says, she must consider her fibromyalgia diagnosis in everything she does. What is fibromyalgia? Fibromyalgia is a chronic condition that is highlighted by the presence of widespread musculoskeletal pain. There is no obvious explanation for the pain, so affected people usually have normal findings on physical examination; x-rays and blood tests are also normal. Cognitive disturbances, mood changes, difficulty with sleep, and fatigue are often present. The onset may be after illness or surgery, but often there is no identifiable trigger. Susan Theobald, of San Rafael, CA has both EDS and fibromyalgia. She is frustrated that it took 30 years to get a diagnosis. She said, “I thought I was just sick or weak, but couldn't understand why I didn't have a fever, respiratory symptoms, or stomach issues. In desperation, I would go to my doctor in tears. Some doctors believed me and ordered lab work, all of which came back negative. Many doctors minimized my concerns and I felt that they had decided I was just a malingerer.” Symptoms can occur in several body systems. For example, patients often have gastrointestinal symptoms and postural lightheadedness. In addition, symptoms can vary in severity, intensity, and frequency, with some individuals needing to seek disability services and drastically modify their lives to function in the world. Getting a diagnosis Diagnosis is usually made based on the locations and fre- quency of pain and after other conditions that cause similar symptoms are ruled out. Currently, there is no lab test for fibromyalgia. Though doctors don’t completely understand the underlying processes behind fibromyalgia, the current understanding is that the condition is due to alterations in pain processing by the central nervous system. Similar dysregulation is often seen in EDS and Marfan syndrome. It is important to have good doctor-patient communication so that delays in diagnosis can be minimized and treatment can be started.

10 Marfan.org