Thursday, June 20, 2013

What I've Learned About ME, CFS and Fibromyalgia

The very first thing I learned when I became sick two years ago, was, that making any sense of ME (Myalgic Encephalomyelitis - the new name for Chronic Fatigue Syndrome) or Fibromyalgia is extremely complicated. I quickly discovered that these were unlike any diseases I knew. There didn't seem to be any consensus in the medical community regarding causes or treatments for them and there wasn't a blood test or any test for that matter, to positively prove their existence. I came to realize that the diseases were phantom-like and existed to my doctors and family purely through my descriptions. I suddenly felt desperate to prove that the pain and extreme fatigue I was feeling was real and not a figment of my imagination or an exaggeration of a milder condition.

To complicate matters even further, it seems, that like snowflakes, no two patients are alike. Symptomology, ranges in severity, from, for example, mild pain in the joints to an inability to get out of bed or remember how to count to ten. The symptoms are so wide-ranging that they seem to have nothing in common. Some that have been associated with ME/CFS and/or Fybromyalgia are: weakness in the joints and muscles, fever, overwhelming fatigue, need for excessive amounts of sleep, body aches, joint and muscle pain, sore throat, shortness of breath, chest pains, heart arrhythmias, sleep disturbances, insomnia, eye pain, profuse sweating, flu-like symptoms, skin rashes, headaches, sensitivity to light and sound, cognitive impairment, painful trigger points (Fybromyalgia only), hoarse voice, depression, anxiety and more I'm sure. Not every patient has all of these symptoms, of course, and may only have two or three. The two or three symptoms one person has though, may become debilitating. Others are diagnosed quickly, find relief with one of the treatments that are currently available and go on to live fairly normal lives.

There are currently very few, if any, clinical tests that definitively prove the existence of either of these diseases. When symptoms are reported, a doctor will usually run a battery of blood tests to rule out illnesses like Rheumatoid Arthritis, Lupus, Sjogrens Syndrome, Lyme Disease, Multiple Sclerosis and others that are found in the blood. When those results come back negative, things really start to get frustrating and confusing. A General Practitioner may refer the patient to a Rheumatologist at this point if they don't have enough experience treating ME or Fibromyalgia. If the person is like me, they begin researching the subject on the internet and read dozens of articles, becoming even more confused. I read articles about causes and treatments for ME and Fibromyalgia that included theories about Gulf War Illness, Delayed Pattern Food Allergy, HHV-6 virus, XMRV virus and B Cell depletion to name a few. Many of these ideas are new and clinical trials are ongoing. As a result, most doctors, even Rhumatologists sometimes, aren't aware of the newest research.

I have learned that sufferers of ME and Fibromyalgia really must keep current on the outcomes of clinical trials and research in this field. Sometimes the best sources of information are other ME and Fibromaylgia patients who have formed a strong alliance and are passionately spreading awareness about the seriousness of these diseases.

Most doctors now acknowledge that ME and Fibromyalgia are legitimate diseases and no longer write them off as hypochondria or depression, but convincing friends and family is another subject. Many people suffer with these illnesses and have little or no support from their spouse or family. They are in pain and feel alone and unloved. Until causes and effective treatments for ME and Fibromyalgia are discovered, this may, unfortunately, be the fate for many people.

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