Wednesday, December 19, 2012

Excuse Me, But Your Fibro Is Showing

A Fibro Rash (my left forearm)
Fibromyalgia is considered an invisible disease. After months and months AND months of seemingly endless tests, I learned firsthand that fibro is a ninja-like invader, leaving little proof of its merciless hold on our bodies. At times we question our sanity. Am I really just imagining this? Could it be all in my mind? If it’s actually there, then why can’t anyone find anything wrong with me?

And unfortunately, not only must we deal with self-doubt, but we must face the unbelief of others, too. “Oh, you look ok to me.” “But you were perfectly fine a month ago…” “It CAN’T be as bad as you claim.” “Well, maybe you need to only try a little harder.” “You just need more motivation and exercise!” “Aren’t you feeling any better yet?” The barbs and the well-meant comments go on and on…

One night, about 3 years ago, something happened that changed my life forever: my first fibro rash. For those of you that have never experienced a fibro rash, they are pesky things! They pop up out of nowhere with little or no warning. One minute, you are annoyed by a little itch here and a tiny itch there. Then, suddenly, it is as though an army of chicken-pox, poison-ivy welts/patches are fighting to consume every inch of your skin! The more you scratch the more it burns and itches.

Since fibromyalgia hits people differently, I’m sure fibro rashes vary and some fibro sufferers are lucky enough to skip this symptom. But for me, fibro rashes are a real and pretty big part of my life right now. My skin turns beet red, as if I had a severe sunburn. I get painful, little bumps under my skin. And there isn’t a single inch of my body that has not experienced a fibro rash at one time or another. Even the inside of my ears and nose, and my eyeballs have gotten red and irritated at times!

As I was lying in bed that night, trying to sleep in spite of the throbbing and aching that was consuming my body, I noticed my pain lessened. Thinking I was finally going to get some rest, I got more comfortable and closed my eyes. Just as I was drifting off to sleep, my right leg became really itchy. Since I had just shaved before I went to bed, I assumed that I was simply getting a little skin irritation from that. So I turned on my light, reached for some lotion, and slathered on some glorious cooling relief. Immediately, the burning faded. Consequently, I turned off the light again and curled back up in bed.

Yet, sometime after I went to sleep, I was rudely awakened by a severe itching and burning under my jaw and up onto my cheeks. Being only partially awake, I began scratching like crazy, longing for relief. However, as my fingernails dug into my skin harder and harder, the horrible sensation grew and grew! My mind started racing: ok, I didn’t shave THERE! What’s going on?

Then, feeling some strange bumps under my skin, I jolted awake and raced to the bathroom. As soon as I turned on the light and saw my reflection in the bathroom mirror, my heart skipped a beat! My face was so red and irritated—more so than I’d ever seen. I was shocked beyond words and couldn’t figure out what was causing this horrible rash. In desperation, I reached inside the medicine cabinet for Benadryl and took a dose. And unable to wait to see if it would help, I slathered my face with calamine lotion. Within a half hour, the itching and burning had stop. The rash completely disappeared. In the end, part of me was left wondering if maybe I had imagined or dreamed it all!

However, a few days later, I had invited my grandma over for dinner. I was busily at work in the kitchen, putting the final touches on our meal and setting the table. My grandma came into the room to ask if I needed her help when she suddenly exclaimed, “What is wrong with your arm? Did you burn yourself?”

Absentmindedly, I looked down at my arm, and again, my heart skipped a beat again. The rash was back but this time on my arm! Again, I took another dose of Benadryl and applied some lotion…and again, the rash vanished nearly as quickly and mysteriously as it had appeared.

Since then I have developed a fibro rash many more times than I could ever count. Sometimes it’s a small patch and is gone within minutes. Other times, it’s covering most of my body and lasts a good part of the day/night. After several failed attempts to show one of these rashes to my doctors (they always seem to vanish just before or while I’m in the waiting room), so I finally decided to take photos and come prepared. My rheumatologist immediately identified it as fibro rash and explained that without figuring out what was triggering my flares, there wasn’t much more I can do than what I was already doing.

Although I was discouraged that I was indefinitely stuck with this terrible symptom, I was relieved to know that nothing worse was happening to me. Yes, having your skin suddenly change color like a grotesque chameleon can be embarrassing and unnerving. Yes, I’ve had to work on my self-control to avoid scratching as much as is humanly possible (since scratching only compounds the problem). And yes, I’d be immensely happy to NEVER experience another fibro rash again. Still, part of me can’t help but smile a little because every now and then my fibromyalgia gets caught red handed—and red faced and red armed—and becomes visible for all the skeptics to see!