Frankly, I Don't Give A *$%!!

I recently found myself in the awkward position of trying to explain to someone near and dear to me why it was I was unwilling to commit to an engagement three weeks ahead of time. She would not accept my "no" but rather adamantly advanced her agenda--that of getting me to attend a meeting "that would change my life for the better."

Clearly she was not listening to me, hell-bent on racking up points for netting a new member for her organization du jour. But in all fairness, I accept some of the responsibility for our frustrating conversation. Perhaps I was not speaking clearly. Maybe I was being too diplomatic. But in all honesty, I was afraid to out myself as a fibromyalgia sufferer.

I was too embarrassed to admit that I function on finite energy and when all the energy I have on any given day is spent, I have no reserve from which to borrow. I was too much of a coward to acknowledge that the daily pain with which I live requires my best energy to manage. I was too proud to acknowledge that the overachieving, success-driven, self-actualizing woman she once knew had retired her superwoman tights and cape long ago. Now my favorite outfits consist of silk pajamas, fuzzy slippers, and a heating pad.

I didn't tell her that I'd rather spend time listening to birds sing or the ocean roar than listening to a motivational speaker pump up an audience; that I'd much rather spend a quiet evening laughing and talking with her than sharing the details of my life with a bunch of people I do not know. I did not tell her, "Frankly, I'm not looking for new friends, new projects, or new inspiration," though I wish I had.

Indeed, I wish I had told her,"If you really want to help improve my life, come on over and finish bringing in the groceries from my car. Better yet, offer to go grocery shopping for me!
Take the overdue books back to the library. Maybe you could bend down and pick up the shells that FuBu knocked off my desk. Would you be willing to brush Mookie's coat? How about vacuuming the carpet for me? You want to help improve my life? Gift me with a weekly maasage for a month. I'm pretty sure that would provide a tangible improvement to the quality of my life."

At 3:00 in the morning, I regretted that I had not said any of those things. But in the light of the day, I realized: Why expend the energy? She wasn't listening anyway.

Snow White and The Eighth Dwarf

Q: What do Fibromites have in common with Snow White?

A: Sleepy (the first dwarf on the right) is our constant companion; and some would say Grumpy (the dwarf in the middle) is a regular visitor, too.

But, rumor has it, there was an eighth dwarf: Achey, a fellow Fibromite. Achey did not get out of the bed early. He did not sing: "Hi-ho. Hi-ho, its off to work we go." He was not able to go out and search for diamonds with his fellow dwarfs.

You never saw or heard of him because he was so fatigued and worn out from managing the pain of  fibromyalgia (FMS) that he could never hang out with the rest of the crew.

If you asked Achey, he would tell you that FMS  is a pain in the neck and in the butt...and in the occipitals, in the trapezius, head, chest, lower back, hips, gluteus, and knees. Literally.

Let's ask Achey.

YaYa: What are your common FMS symptoms?

Achey: I hurt all over and nothing seems to eliminate the pain. I have trouble going to sleep and I have touble staying asleep. And when I wake up, I have trouble going back to sleep. I pretty much feel like I have the achey part of the flu--all the time. My concentration and memory are severely affected by the lack of sleep. I hate not being as sharp and witty as I used to be.

YaYa: Oh, Achey, that must be stressful--mentally, emotionally, and physically.

Achey: It is. FMS is stressful and down-right frustrating. Many-a-day, I wake up with my clothes and pick axe right beside the bed. One part of me wants to jump out of bed and go mining with the other dwarfs, but my body feels like it has carried a ton of diamonds up a hill during the night. Its like my mother used to say: "The Spirit is willing, but the Flesh is weak."

YaYa: Does anyone know what causes FMS?

Achey: Its a mystery. That is a part of my frustration. Nobody knows for sure. But there are many theories. Researchers believe that the factors that cause or trigger FMS include:

*  Injury or trauma that affects the musculoskeletal system
*  Injury or trauma that affects the nervous system
*  Early emotional trauma
*  Neurological changes, such as disruption in the pain threshold response
*  Changes in muscle metabolism that cause fatigue and decreased strength
*  Profound sleep dysfunction
*  Response to an infectious virus or bacteria
*  Hypometabolism, an underactive thyroid, or thyroid hormone resistance
*  Post-traumatic stress
*  Lyme's disease

Some even believe fibromyalgia is hereditary.

YaYa:  How was your fibromyalgia diagnosed?

Achey: I searched high and low for years for answers to my ailment. I've heard that it takes the average sufferer about five years to get an accurate diagnosis.  One reason is because the symptoms of FMS mirror other illnesses like multiple sclerosis, lupus, and rheumatoid arthritis.

YaYa: Are there tests for FMS?

Achey: Well, there aren't any laboratory tests to diagnose FMS; but tests are used to rule out the other conditions. The American College of Rheumatology has established criteria to use for diagnosing fibromyalgia, though.

First, you must have a long-term experience of widespread pain in all four quadrants of the body. That means you have to have pain above the waist on the left and right side; and, below the waist on the left and the right side for three months or more.  The diagnosis includes pain at 11 of the 18 tender points.

YaYa: Is there a cure for fibromyalgia?

Achey: No, not yet. But just having a name for what I have been experiencing is helpful. There is no cure for fibromyalgia, but there are treatments which can help a Fibromite cope with the illness. I use several, including: medication to help with the non-restorative sleep, yoga, meditation, stress-reduction techniques, massage, chiropractics, and water exercise. You'd be surprised at the correlation between sleep and pain management.

I feel better some days. Not pain-free, but better. At the rate I'm going, I should be able to attend the 75th anniversary reunion of the dwarfs in 2012.

May: Fibromyalgia Education and Awareness Month

Tomorrow, May 12, has been designated National Fibromyalgia Awareness Day. The theme this year is "Fibromyalgia Affects Everyone."

The slogan sounds a bit hyperbolic to me, but I will let you be the judge. Over the next several weeks,  I plan to answer some basic questions about this puzzling syndrome: what is it, what causes it, how do we treat it?

If you or a loved one lives with fibromyalgia, I hope you will find the blog entries for the rest of this month helpful and hopeful.

As a functioning(most-of-the-time) "Fibromite" I want to tell you about this syndrome, how it affects the daily lives of those of us suffer with it, and how we cope. We hope with increased awareness, knowledge, and understanding, improved funding for fibromyalgia research will ensue.



FIBRO WHAT?

 Fibromyalgia Syndrome (FMS) is a chronic, wide-spread pain syndrome that involves muscles, connective tissues (tendons, ligaments), bursae, and joints. FMS involves abnormal pain processing, sleep disturbances, fatigue and the resultant cognitive and memory impairment, or fibro fog as those of us plagued by it have affectionately named it.

 FMS sufferers do not get much, if any, stage 4 Delta sleep. This is the healing phase of sleep where the repair of bodily tissues takes place, as well as the restoration of the immune system. Muscles in Fibromites do not recover overnight as in normal individuals, leaving us feeling as if our bodies have been marched over, multiple times, during the night.

FMS can be accompanied by such ailments as swollen glands,  irritable bowel syndrome, gastroesophageal reflux disease (GERD), migraine headaches, anxiety, depression, and sensitivity to environmental elements, like noise, odors, bright lights, and changes in barametric pressure and temperature.

The severity of the symptoms can wax and wane, but for many, fibromyalgia can be extremely debilitating and interfere with basic daily physical activities and the overall enjoyment of life.

Stay tuned for more on fibromyalgia:
May 18   Causes and Diagnosis
May 25   Treatments and Tips for Coping
June 8     Loving a FMS Patient (an interview
                 with my Buddy.)

I've Got The Flu, Boo-Hoo

BE BACK NEXT WEEK!