Fibromyalgia pain has been a part of my life for a long time. In my journey of living with fibromyalgia pain, I have discovered a hard truth. So many people don’t believe those of us who suffer from what is often called the “junk diagnosis”. They don’t understand how someone who looks perfectly healthy could hurt so incredibly bad. They think to themselves (and sometimes out loud), “Fibromyalgia pain is just in their heads. If they sucked it up, powered through, and made up their minds, they could get over it.”
I have been the object of those speculations. When my fibromyalgia pain (I didn’t know what to call it then) reached an all-time high while I was deployed to Iraq, there was a good bit of skepticism from those who were supposed to know me best. In their minds, I was just trying to get out of war… ugh! Their unbelief about my fibromyalgia pain made my struggle all the more life-consuming. How could I prove it? How could I have people believe me? What was wrong with me? Was I going to die? Didn’t they know that I was a West Point grad and an Apache pilot? Apparently they did, because they told me they, “expected more out of a West Point grad and Apache pilot.” Wow. Invalidated. Worthless. Hopeless. Angry. That’s how I felt.
But they let me go home. They let me take my leave and told me that if I could find someone to believe my fibromyalgia pain was real, some medical professional to diagnose me, then, maybe, they would help me out. I started taking supplements, phenylethylamine hcl to be precise, to see if that would assuage the pain, which it did to an extent, but that wasn’t the cure.
I prayed and prayed. “God, please give me answers. Lord, please help someone believe me.” Then, I met him. The battalion flight surgeon. He said to me, “I believe you if simply for the fact that you are a West Point grad and an Apache pilot.” Music to my ears. Someone was listening. Someone believed me. He said, “We will leave no stone unturned until we figure it out.” Tests started. Appointments with specialists were made. And my prayers changed to, “God, please help them to find something… anything! Lord, please tell me I’m not crazy!”
After months of tests, appointments, and praying, I was finally diagnosed with fibromyalgia. The “junk diagnosis.” Ironically, I felt ashamed of my diagnosis. And although I was relieved that I wasn’t going to die, there were so many neurological symptoms, besides the fibromyalgia pain. Blacking out, dizziness, delayed perception of touch, long-lasting pain after simple touches, difficulty breathing – all apparently lumped in with my fibromyalgia diagnosis. But I was a lucky girl. I had some supplemental diagnoses. They found nerve damage, a brain lesion, and my neurologist said that he wouldn’t be surprised if I developed MS at a point later on in my life. “Yay!” I had something else to tell people… something they would believe, something they could relate to, and something they might actually understand.
Since then, I have come to fully realize how REAL fibromyalgia is. People struggle with the pain every day. They think that it is a life sentence of because too many doctors don’t understand fibromyalgia pain. Too many people get diagnosed but never educated. There’s Cymbalta, right? And then too many people find themselves in the rut – never-ending cycles of pain. But I am here to tell you that life with fibromylagia pain does not have to be a prison sentence! There is hope!
One of the greatest things the Army did for me was make me take a six week course on fibromyalgia before they would medically discharge me. I was sent to the field’s leading experts down at Brook Army Medical Center in San Antonio, TX. While in that class, I was surrounded with people just like me. We were all hurting and needing answers for how to not hurt. I learned so much about what causes fibromyalgia, what can trigger pain, what fibromyalgia actually is, what you can do to treat symptoms, and most of all, how to LIVE with fibromyalgia.
Living with fibromyalgia is a journey. For me, Iraq was the point at which fibromyalgia pain reached its apex. When I finally knew something was terribly wrong. And since I didn’t know what was causing it or what to do, I spiraled out of control. I spiraled into the black hole of pain and sleeplessness, with no road map out. But then I reached the bend in the road. For me, that bend was education. I hope for you, my story can serve as the bend in your road. That’s where I started to learn about what to do. But don’t stop at the bend. Keep going on the journey. Take this opportunity to actually DO SOMETHING.
For me, the journey continues. There are ups and downs along the path. Sometimes I am reminded why I am a 60% disabled veteran. Other times, I feel really good – like so good that I don’t even think about fibromyalgia! But if I ever get stressed or my back starts to hurt or I have babies by c-section and fibromyalgia pain rears its ugly head, I know what to do. Hopefully this story has provided an opportunity for you. In my next post, I share what I do to treat my fibromyalgia pain.