Treatments are readily available for sufferers of Chronic Fatigue Syndrome and Fibromyalgia according to experts.
Two weekends ago the Organization for Fatigue and Fibromyalgia Education and Research (OFFER) hosted an information conference for healthcare providers and patients for the third year in a row.
Entitled “Advances in Understanding and Treating Chronic Fatigue Syndrome and Fibromyalgia,” the conference discussed the latest tools available to recognize and treat these conditions.
While there is no cure for Fibromyalgia Syndrome (FMS) or Chronic Fatigue Syndrome (CFS) the conference stressed that there are treatments available to help those who suffer from the syndromes.
The Tooele Transcript-Bulletin attended part of the conference where Dr. I. Jon Russell, an FMS expert from Texas addressed about 400 plus patients.
He explained that once FMS starts it’s there forever, but added that one of the biggest helps for FMS patients is exercise. “Should you exercise even if it hurts?” he asked. “Yes, it keeps you from getting worse.” He said those with FMS who don’t exercise become much worse off than those with FMS who do exercise.
Russell said there are some doctors in the nation that don’t believe in FMS because it can be difficult to diagnose and because the symptoms of the syndrome vary from person to person.
To prove his point that it is a real disorder he showed what happens when a pressure point is touched on an FMS patient compared to someone without the condition.
He used MRI images of the brain to display his findings.
The first set of slides showed pictures of someone’s brain without FMS. When pressure was applied to a trigger point, two very small yellow dots appeared on the image. When the exact same pressure point was touched on the FMS patient, the images of the person’s brain looked like they were on fire, with huge yellow and red spots everywhere.
He said the proof that real pain is occurring is obvious.
In summing up the condition he showed a cartoon where a small dog was watching the television. A news anchor came on screen and said “This country is going to the dogs.” The dog replied, “Finally some good news.”
He said that is essentially what happens inside the brain of an FMS patient — a message is clearly sent but is interpreted wrong. This is what causes the aches, pains and fatigue that an FMS patient has.
According to OFFER, FMS is a complex, multi-system disorder of unknown cause, though some research points to periods of emotional stress, infection, hormone shifts such as menopause, surgery, or mechanical trauma as triggers for the condition. Body-wide pain and stiffness are the primary symptoms.
But FMS often is accompanied by a host of associated disorders, such as disrupted sleep, fatigue, irritable bowel syndrome, irritable bladder, headaches, mood disorders and cognitive dysfunction (a.k.a. brain fog). Research points to an underlying problem with the central nervous system.
Diagnostic criteria for FMS was adopted in 1990 by the American College of Rheumatology. It defines FMS as widespread pain, lasting at least three months in the axial spine and all four quadrants of the body. A physical exam must find pain on at least 11 of 18 specified tender points.
There are not yet any medications that are FDA-approved specifically for FMS, so the symptoms are treated separately and tailored to the individual patient.
Treatment options include: pain and sleep medications, antidepressants, anti-anxiety or anti-convulsant medication, physical therapy, exercise and training in stressreduction or coping strategies.
Clinical trials are underway with a variety of treatments from acupuncture to the sleep drug Xyrem.
Locally a group for fibromyalgia suffers is currently being led by Patti Westenburg. She can be reached at 850-0009.
Westenburg said two of the primary factors in the fight with the syndrome are to have hope and faith and to never lose them. Her group has compiled a list of web sites that addresses aspects of both CFS and FMS conditions thoroughly. Here a partial list of the sites, each begins with www.
• offerutah.org (Utah based call 801-328-8080)
• rheumatology.org (keyword fibromyalgia)
• fibroandfatigue.com (1-888- 443-4276)
• interactiveenergy.com (using your mind to control pain)