Tuesday, November 20, 2007

Understanding Fibromyalgia and Chronic Pain

My purpose for this blog entry is to increase understanding of fibromyalgia and chronic myofascial pain. First is a list of highly rated books I own on the the subject. Next, some of my personal experiences with FMS/CMP. Tomorrow will be on my own experience of what is helpful. A Google search on "fibromyalgia" will reveal many websites with more detailed and thorough information than what I present here.

The Fibromyalgia Advocate - get sufficient pain treatment medication, and other help.
Fibromyalgia & Chronic Myofascial Pain - similar conditions, often confused or conflated by medical professionals. Find out the difference and get an accurate diagnosis.
The Trigger Point Therapy Workbook - don't just stand there in pain: do something about it!

I was diagnosed with fibromyalgia on December 17th, 2003, by a rheumatologist who specialized in fibromyalgia patients, after being initially diagnosed by my family doctor. At first, I didn't even tell my relatives -- my mother, sister, son, daughter, etc. I didn't want to admit I have a painful, chronic and incurable condition. I didn't want people trying to manage my life for me, and 'helping' me by limiting what I could do. I didn't want to be seen as different, or helpless or some kind of damaged goods. I was in a deep flare because of doing everything as if I didn't have any pain or exhaustion. I was diagnosed after I passed out one morning, and discovered that denial doesn't work as a cure, and can push a mild case of FMS into a major flare.

I'm writing about FMS and chronic pain now because I hope to empower others who have FMS, and people who love someone with FMS. Knowledge is power: the power to stand fast and get the correct treatment, the best medication, for a condition. Knowledge is the power to be not intimidated by people who, whether out of ignorance or malice (usually ignorance), try to manage you (for your own good, of course!) with comments such as "well, everyone has pain, you know". Knowledge is power to vote with your feet and fire a doctor who tells you it is all in your head.

When I tell those people that studies have shown that people with fibromyalgia have at least four times the amount of the pain neurotransmitter in their muscles, they usually look blank for a moment as they process the concept, and then most of them look shocked, as they try to imagine what that would mean in terms of their own aches and pains.

CMP and FMS do not show "on the outside". Sufferers look 'normal' and, in between bouts of pain, weakness and exhaustion, can be as busy as anyone else, or even busier as they try to regain control of their lives and catch up on postponed work and play. Like other "invisible" diseases that leave no surgery scars and require no casts or splints, the chronic pain of FMS and CMP (Chronic Myofascial Pain) deals sufferers a double blow: that of dealing with a condition that limits your choices and greatly greatly alters your life, and also the isolation that comes from living with a condition that most people don't understand.

My husband's first comment on hearing I had the condition since I was a young teenager was, "Well that explains a lot." Meaning: why would someone who was graceful and loved to dance also be clumsy and drop things frequently? Why would someone who loved people and life and parties be too tired to go do anything for months at a time? Why would someone who 'popped out of bed in the morning like toast out of a toaster' suddenly start sleeping fourteen hours a day? Why would his wife be busy and enjoying work and other other activities, and suddenly collapse and be unable to even complete household chores?

As we learned more about FMS (FibroMyalgia Syndrome), these and other mysteries were answered. After spending days reading books on FMS, and weeks in a class from my HMO on how to manage it, I discovered that, even allowing for a vast range of individual differences, "my" FMS was extreme. It took years after that to understand that I have two concurrent diseases: FMS and CMP. CMP cannot be managed like FMS, and knowing which you have is essential.

1 comment:

Primadonna Angela said...

Thanks for writing this. It's interesting. It makes me think, maybe I have this, too. Sometimes when I'm "on fire" I seem to be filled with endless energy, and then boom, suddenly I feel like sleeping like a log for hours and hours. Your writing makes me more aware to take care of my health. Thanks for sharing.