Monday, May 7, 2012


Fibromyalgia Awareness Day is May 12.
Walk more miles.
In my shoes.

Anyone who knows me knows that I LOVE shoes. My closet is filled with them and Nordstrom's anniversary sale was my nirvana. I'd go through those racks of shoes and with a huge smile on my face buy all sorts of heels (at least 3 inch because anything less was totally unacceptable) for me and for my daughter. So, for me, it is fitting to bring my shoes along to my Fibromyalgia Awareness Day post.

Gorgeous, black, sexy, high heel pumps. I don't know about anyone else but I felt like a million bucks when I wore them. If you look at them you'd never think that the feet inside those pumps hurt like hell. We wear our invisibility like those shoes. We might look fabulous but inside we wish we could crawl right back into bed. No one sees what it's like to crawl to the shower and almost cry as the water pounds your back. No one sees that lifting your arms to put on makeup takes as much energy as a 5 mile run. Forget about lifting the hair dryer. By the time we're done we might as well just stay home.

Most of us were typical Type A. I know that I thought that I thrived on stress. One of my favorite lines was from Top Gun. I did love going at (at least) Mach Two with my hair on fire. I worked hard, played hard and rested hard. Usually my game plan when I'd clean my house was to start early and work like a tornado and NEVER stop for a break. When I did stop it would take the jaws of life to move me from the couch. Come to think of it, I worked that way too. My co-workers would call me "the tornado" because I'd come in, rearrange the sales office and then when it was done; stop. Yes, I drove people crazy.

Now, it feels like aliens inhabit my body. What are all these strange pops and creaks? Why does every bone and muscle in my body go from a dull ache (on a good day) to blowing past 11 on the pain chart? Why am I better than a barometer and cringe in fear when I feel a storm coming? I used to love rainy days. Visually, I still do but I know I'm going to hurt like hell. Even my family calls me giving me weather forecasts. My hands start to ache with every tick of the humidity levels and I know what's coming and it isn't good.

It seems that all doctors want to do is throw more pills at us that don't work. They want to try to say that it's a Vitamin D deficiency or some other supplement that will "cure" the Fibromyalgia that they don't seem to believe in anyway. We've taken everything out there and none of it gets to the root of the problem. The research points to a central nervous system malfunction and we keep getting sent to rheumatolgists. Maybe we need a neurologist? 

When will someone try to figure out why the switch was suddenly flipped? There is too much Substance P (which heightens our awareness to pain)  in our spinal fluid. Our glutamate levels are abnormally high. Our internal amplifier is turned up full blast. Even the slightest touch can bring us to tears. The medications that are used have side effects that are worse than the symptoms we experience.

Why do we have tons of symptoms that ebb and flow with each passing second? Why do some people have more fatigue and others have more pain? Why is the IBS worse with others? We can all agree on the myriad of symptoms but some medications work for some and not others? Treatment and management are as different as the colors of the rainbow. Why do we feel foolish when describing our symptoms in an almost apologetic manner? We feel guilty for feeling sick. Sick and tired.

We feel like we are being labeled "lazy." We're tired of research for every other disease out there but when it comes to Fibromyalgia and Chronic Fatigue we are the proverbial red headed step child. The problem is we lose confidence because we don't recognize who we've become. We believe our own bad press: we feel lazy, whining and maybe, just maybe, if we get up and just DO SOMETHING we might feel better.

We are the wounded warriors.

We are invisible.

We are in pain.

We are tired.

And we don't know why.

Fibromyalgia Awareness Day.  May 12.