ME/CFS & Fibromyalgia Awareness

What I've learned about ME/CFS & Fibromyalgia 

In the Last Two Years (the Basics)

Making sense of, ME/CFS, Fibromyalgia and all of the other "autoimmune" related diseases is VERY complicated.  This was the first thing I learned.  They are complicated because the medical community, admittedly, doesn't know what causes these diseases or how to treat them.   When a sucessful treatment is found for one individual, their doctor isn't really sure why it worked.  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 10.

Symptoms  

The symptoms are so wide-ranging that at a first glance they seem to have nothing in common.  Some symptoms that have been associated with ME/CFS and/or Fybromyalgia are:  weakness in the joints and muscles, mild fever, overwhelming fatigue, need for exessive 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, various skin rashes and disorders, headaches, sensitivity to light and sound, cognitive impairment, painful trigger points (Fybromyalgia only),  hoarse voice, depression, anxiety and the list goes on and on.  Not every patient has all of these symptoms, of course, and may only have one or two.  The one or two symptoms one person has though, may become dibilitating.  Others get diagnosed quickly and find relief with one of the treatments that's available and go on to live fairly normal lives.

Testing for ME/CFS & Fibromyalgia

There are very few clinical tests that can be done to "prove" the existance of either of these diseases.  When the above symptoms are reported, a doctor will usually run a battery of blood tests to rule out diseases like Rhumatoid Arthritus, Lupus, Sjogrens Syndrome, Lyme Disease and others that can be found in the blood.  But I'll go into more detail about testing in another section.

Causes of ME/CFS & Fibromyalgia

When those results come back negative, things start to get really frustrating and confusing.  A General Practitioner will probably refer the patient to a Rhumatologist at this point, being not sure how to proceed.  If the individual is like me, they hop on the internet and read dozens of articles, some completely off the wall and become even more confused.  They may come across articles about "Gulf War Illness", Delayed Pattern Food Allergy, HHV-6 viruses, XMRV viruses, B Cell depletion and many more hypothoses on what causes these illnesses and in come cases, what may be able to cure them.  Many of these ideas are new and clinical trials are being started constantly.  As a result, most doctors, even Rhumatologists, aren't able to keep up with the newest "thing".  It's really necessary for the patient to keep close tabs on the current research.  Too bad none of us have the energy to do so.

Spoonies

Hopefully some of my findings will help make the process a little easier, especially for those who are just starting this journey.  There is a big supportive community out there who call themselves Spoonies.  Spoonies are broadly defined as people who suffer from chronic illnesses. If you're intrigued, you can read about it here:

www.butyoudontlooksick.com

There are also countless blogs and articles written by people who are trying to live with these mysterious afflictions.  These stories can be comforting as well as informative.  I have a section on these blogs that I find particularly helpful.