I am struggling with what I refer to as “partial paralysis” today. While standing in my bedroom in the early part of the afternoon, my right leg suddenly and without warning turned into a dead weight on me. I couldn’t move it. Any of it. At all. From hip to toes, my leg was locked up solid. With only my left leg and my cane to support my weight, I collapsed into my dresser that, thankfully, happened to be right in front of me. My right leg however, stayed put behind the rest of me, and it wasn’t until my father picked it up and moved it, was it back under my body where it belonged. I burst into tears and clung to my dresser. I could still feel my leg, but it was a different and odd feeling sensation mix of numbness, deep burning, and rigidness. I knew it was still there. Moving it however, no matter how hard I tried or how badly I wanted to, wasn’t happening on my own. Once again, I was dependent upon another person to help me function.

Eventually, I was able to calm myself. I knew that if I gave into the panic (Boy did I want to panic!) the symptom would only get worse. I forced myself to stop crying and say out-loud as my father held me up, “I am OK. I will be OK as long as I don’t panic and can concentrate.” From there, I closed my eyes, took multiple deep breaths to slow my breathing down, and then put all of my mind and energy into relaxing and flexing the muscles in my right leg. It wasn’t long before I was able to move it in small struggling amounts. Trusting it not to freeze on me again however, that is going to take more time. A hot shower, meds, and a few hours of bed rest later, I still feel that odd mix sensation and I only have 85% mobility back in my leg.

The television commercials for Lyrica (a standard Fibro medication), always reference the pain and fatigue of the illness. While those two things are a huge part of everything, I wish more people understood just how much the very lack of muscle function, or freezing, is just as prominent and important as the pain. It is times like today that I remember that Fibromyalgia is considered to be an “invisible” illness. It is a thought that, for the most part, I understand. If you were to look at me on any given day, you would think I was totally fine. Maybe a little tired, but fine. On a day where my legs and hips lock up on me and I need my cane to help me walk, you would realize that Fibromyalgia is not as not as invisible as it seems. It almost makes me wish someone had captured my paralysis moment on video so that more people understood just how visible Fibromyalgia can actually be.

For a long time, I wondered if I had been misdiagnosed. It wasn’t until I heard from other Fibro Fighters dealing with their own paralysis, that I stopped questioning it. Losing muscle function is part of the package. It just isn’t talked about as much. But it is time for it to come out of hiding and become visible. These partial paralysis moments need to be talked about and even captured in video whenever possible. Doctors need to see first hand that this happens so that the stigma of “disproof” that is commonly associated with the illness, will fade away and the diagnosis can be taken more seriously. Patients need to know that the symptom is common and that they are not alone if it happens to them and also that they are not somehow mentally making it happen – another common stigma. Most importantly, treatments that restore mobility and don’t just focus on pain, need to be developed.

Next Tuesday is Fibromyalgia Awareness day. If you are a Fibro Fighter, or have someone in your life that is, please help to make this illness visible. Talk about your struggles. Write, draw, shoot video, post links, take pictures, whatever it takes, but don’t hide it anymore. You are not alone, and your story is worth telling. You are visible!

If we do this, together we can hold each other up and begin to move forward. ❤