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!

The Soothing Power of the Shower

Moving to our new home this month meant parting with my bathtub. Although I was excited to be crossing into the exciting new territory of homeownership, I was sad that the house we were purchasing only has a shower. For those of you who deal with chronic pain and sore/stiff muscles, you probably know how amazing a long, luxurious soak can be, especially after a stressful day. Add some Epsom salt to the water, and you have a glorious haven you wish you never had to leave!

During the worst of my flare ups, my bathtub was literally a lifesaver and kept me sane. I have been known to take 4 steaming hot baths in a single day because whenever my body is immersed in hot water, the pain eases and the stress seems to melt away! Consequently, I was quite scared that I had lost this glorious reprieve forever--or at least until we could afford to have a bathtub installed.

As soon as I stepped into the shower of my new home, my worst fears became reality. The water was so limp that my inner aches and pains weren’t interrupted for even a second. The idea that I might have to go for years without a soak hit me hard, and I literally sobbed. All the physical, mental, and emotional stress of our move was difficult enough. But to live without one of the few things that make my fibro easier? It was more than I could handle!

This week, however, has changed my opinion of the humble shower forever! My fiancé suggested that we go to Home Depot and pick out a new showerhead. I was extremely skeptical that a simple showerhead change would make that much difference. Still, I relented and tagged along. If there was a chance, no matter how slim, that I might get back some relief from my fibro symptoms, I was all for it!

Perusing the bathroom aisle, my spirits sunk again. I couldn’t believe how expensive some of the showerheads were, and I knew that since we just went through all the expenses of moving, we were obviously on a budget. After reading package after package, I was about to give up and go home. But then a showerhead caught my eye. It wasn’t very fancy looking, and it was only $29.99 (small change compared to some of the other selections). Nevertheless, the package guaranteed that this little showerhead could increase your shower’s water pressure up to 30%. I was sold!

On the ride home, I cradled the bag protectively in my lap, eager to make the showerhead swap. My fiancé went straight to the bathroom with his tools and went to work. Shortly after, the shiny new shower head was gleaming at me, beckoning for me to come and give it a test run. Despite my eagerness to try it out, bedtime arrived much too soon, and I was forced to anxiously wait until the next morning to take a shower.

The next day, I awoke at 6 am, super excited to try out our little shower upgrade. The moment the water hit my body from the new showerhead, though, I realized the wait was worth every second! The massaging setting was the most amazing thing I had felt in ages. It was as if my body was wrapped in total bliss! The tension and pain in my neck and back melted away. The muscles in my arms and legs, tightly cramped from hours of packing and lifting, relaxed. And my headache faded as the water massaged my scalp. Never before had I thought a shower could feel this soothing. And never again will I ever underestimate the power of a simple, affordable showerhead upgrade!

The Best of Intentions

Growing up, my father always lectured me on finishing what I start.  He drilled it into my head over and over again that if you begin a project, you must not leave it incomplete.  I love my dad dearly, but he was a horrible perfectionist who believed that it was better to never start something in the first place than to leave it forever unfinished.

Although I do agree with my father's philosophy to some degree, I have to say that sometimes it isn't about the final destination but the journey itself. Sometimes, it is more important to start the journey and to see the different places the road might take you than to constantly worry about where it all might actually end.

A few months ago, I began this blog with a very specific destination in mind.  I hoped to use this blog to share, explore, and find a new and better me...one that is happier and healthier, whether or not my fibromyalgia ever decides to go away.  In the beginning, I was extremely inspired and had great ideas in mind for this blog.  Honestly, I had high hopes and the best of intentions to see this journey to an end.

However, life soon got in the way and distracted me from my original intentions.  The late summer heat sapped my energy and left me with uncomfortable migraines.  Then fall came upon us, bringing a new year of cyber schooling my 2 young children and my yearly autumn flare.  And now I am in the middle of vast changes in my life with the purchase of my family's first home.

To be completely honest, I'm super exhausted and overwhelmed by the magnitude of life changes I have endured the last three months with conquering clutter, packing up an entire household, moving it all to our new house, and now unpacking to make this new house a home. Yet, all these changes have reminded me again of how important this journey of self discovery and self improvement really is to me and why I wanted to share it with you all in the first place!

After I first was hit by this fibro storm about 3 1/2 years ago, I felt totally alone and helpless.  I seriously felt my life had ended and no one cared.  I didn't know what was wrong.  My doctor was as clueless as I was.  And my family and friends seemed to look at me like I had lost my mind.  I have come a long way since that awful, lonely time, but I still have far to go.  And if this blog helps even a single person to avoid the dark, desolate hell that I endured because no one understood or believed me, then every single second and iota of energy that I put into this will be worth it!

No, this blog probably will not be the spectacular, clear-cut journey I had envisioned at the beginning, but it's still a worthy journey that I must take.  Please bear with me as I fight my fatigue, migraines, pain, and brain fog to bring you my thoughts, experiences, and helpful fibro tips.  I can't promise you daily blog posts or amazing insights, but we are in this journey together...through thick and thin.  If and when my best of intentions fail again, I promise to come back fighting as strong as ever.  We can do this together and we shall prevail; here's to a fantastic, fancy-free future for us all!

A Holiday From My Holiday

Fireworks Grand Finale

Yesterday was Independence Day, one of my favorite holidays. I spent the day with my family. We had a cookout at my future mother-in-law’s home with lots of good food and wonderful conversation. We had 5 hours of relaxing and socializing outdoors. Afterwards, we drove to see a local fireworks display and then returned home for a few sparklers and small fireworks with the neighbors. Overall, I would say that it was a happy, enjoyable day. I went to bed close to midnight last night with a smile on my face!

This morning, though, I awoke and felt as though a train had run over my entire body--twice! No, I did not run a marathon. In fact, the most physical thing I did all day yesterday was make a dash from the picnic area to the back porch when it started to rain (a distance of only a few feet!). For all intents and purposes, it was a lazy holiday, and I should have awoken refreshed. Instead, I have been forced to stay in bed for the majority of today.

For all of you who suffer from any condition that involves fatigue and chronic pain, you know what I am feeling right now all too well! I am suffering from what I like to call “holiday-from-my-holiday” or “day-off-from-my-day-off” whiplash. This state of necessary recuperation occurs whenever we decide to do too much on our free days. It can manifest in many sneaky ways and usually occurs when we are having a lower symptom day. We decide to have a cleaning/working marathon to catch up from a tough week. Or we have the opportunity to do an activity we haven’t done in years, and we get overzealous. Or like me yesterday, we underestimate the physical, emotional, and mental toll a long (albeit laidback) day can have on us.

When we were healthy we could go with the flow and do whatever we felt like at the moment. If we were energetic, the world was in our hands. We were free to seize the day! Now, though, with a chronic pain and fatigue, we can’t go solely by what our bodies and minds want. Sometimes, our bodies fight us at every turn, and we must push to get the simplest tasks finished. Other times, our bodies lie and make it seem as though we are almost normal again.

Even though I have been dealing with fibromyalgia for half my life, I still fall prey to this trap time and time again. I’m a ball of energy by nature. I love to be moving. I love to be accomplishing things. Hard work makes me feel good. I was raised to work hard and then push even harder. And I’m a perfectionist to a fault at times. I compete with myself constantly, and I always set high goals.

Unfortunately, fibromylgia and this mentality can be an explosive combo. My stubbornness and inner determination have helped me in so many ways over years. At times when I thought for sure I couldn’t go on because my symptoms were so unbearable, my inner strength and focus pushed me through. However, this hardworking perfectionism of mine has also done its share of harm. I have inadvertently confined myself to bed for over a week (several times) simply because I felt pretty normal and thought I’d get a ton finished before my symptoms flared up again. Even now I’m tempted to go into a cleaning/working frenzy EVERY single time I have a better day.

Ultimately, living with such a limiting medical condition is an extreme balancing act. We can’t allow our health to dictate how we live our lives or to define who we are as individuals. Yet, we can’t ignore it and pretend that we can still live the same lives were living before. We should never let it defeat us, but we can’t push so hard against our own bodies that we are defeating our own selves. We must find a happy medium--a place where we are free to be ourselves and to live life to the fullest, while still planning and living through the confines of our symptoms.

We need to be much more adaptable and pliable. If our bodies block one avenue, we must never give up on finding another more richer path. I am not one of those people who will ever throw at you the ‘if-life-gives-you-lemons’ advice. Sometimes, the fact of the matter is life can be pretty unfair and leave us with unripe, un-juicable lemons. We can sit around and grow bitter. But what is the sense in that? Personally, I’d much rather throw away the lemons and live my life the way I feel it should be lived!

Let us grab life by the horns this month and show it who is boss! Instead of complaining about life happening, let us shape it and enjoy it like we never could have before facing this formidable foe. They say that ‘necessity is the mother of invention.” Well, we need to find a life that works better for us. So, let us start inventing it now. How we live our lives is truly in our hands!

Welcome to Fibro and Fancy Free

Hi, everyone, and welcome to my new blog! My name is Amanda, and I was diagnosed with fibromyalgia in January 2011.  I’ve had symptoms since I was a teenager and possibly most of my life. I decided to start this blog as a way to share my journey to a freer, healthier life, while offering a place for my fellow fibro suffers to support one another and swap survival tips.

As I contemplated titles for this new blog, Fibro and Fancy Free leaped into my mind. Everyone familiar with fibromyalgia knows that this medical condition can be absolutely excruciating and debilitating. So how could my mind associate ‘fancy free’ with fibromyalgia? I know a lot of ‘f’ words that would more readily describe my daily struggle with own body. Many of them are pretty negative.

Do some of these sound words like your own struggle?

After some careful reflection, though, I realized that I want and NEED to reach a point in my life where my condition no longer defines who I am as an individual. ‘Fancy free’ represents where I want to be. Do I want to live in denial and pretend fibromyalgia is a pleasant walk in the park? No, of course not! Have I convinced myself that it’s not real or only in my head? Oh, it’s real alright! In fact, it reminds me of its presence all of the time. Am I convinced that it is going to just vanish? Absolutely not! Part of me longs for the day I’ll be fibro free, but the rational side of me realizes that with a 2 ½-year flare up and years of symptoms, it may never clear up.

Although I’ve accepted the fact that I may be stuck with fibromyalgia for the rest of my life, I have not given up. I will continue to fight the good fight and strive for a healthier, happier tomorrow. I know the journey won’t be easy. In fact, I’m expecting many bumps in the road and quite a few setbacks. But I hope you will join me so we can travel this difficult road together!