Wednesday, August 8, 2012

What Is Fibromyalgia Anyway?

As I was walking down the street yesterday I noticed I walk like a duck-billed platypus. Heels in with my toes splayed out. I tried to correct my gait and point my feet straight but felt like I was walking bowlegged. So I came home and watched TV last night standing behind the sofa with one leg folded over the top of it and the foot I was standing on pointed straight. Back and forth I switched legs, trying to pull my tight muscles into alignment until my husband told me to sit down because I was making him nervous, hovering over his shoulder and all that. But just that simple correction made my hips and low back felt like I was racked up on a medieval torture device designed to pop the bones from the joints. Okay maybe not that bad but the level of stress and tension and pain in the area ran very deep. 

There are many theories about what Fibromyalgia actually is. Many. At one time modern medicine believed it to be rheumatic in origin, which includes a large number of inflammatory conditions characterized by pain, range of motion limitation and degeneration of the musculoskeletal system. So they sent us to rheumatologists to unpuzzle our pain. But upon years of further research they found no inflammation or degeneration actually going on. Which earned patients diagnosed with Fibromyalgia a pretty shady reputation because, quite frankly, since they didn't understand our pain they didn't believe it either. Now they have settled on neurology. Central nervous system damage, elevated neurotransmitters, misfiring neurons, changes in the way the brain communicates with the spinal cord thus affecting many major systems in the body. This is the definition I have clung to for dear life, screaming to anyone who will listen to me this illness is as real as Christmas on December 25th. It has to be. For heaven sakes it disabled me and made me want to die!

But now I am beginning to think there is more going on. I am knee deep in the middle of a gigantous flare. Haven't had one this bad or this long in quite some time. It's a good refresher of the weird and strange symptoms this illness inflicts. I am swollen, stiff and sore. Feel like every cell in my body is expanded and pushing to burst out of my skin. I can barely move my body or twist around. And as mentioned before my musculoskeletal system is jacked up. Could all this be from a damaged central nervous system sending excessive pain signals to my brain? I read a study recently that hit Fibro from a deeper angle. It sought to understand a different cause of why the nerves are sending a message of pain to the brain in the first place. The doctor is testing the effects of an antihistamine in quieting immune cells called mast cells which communicate with peripheral nerve endings in an effort to quiet these amplified pain signals.* He may be on to something, time will tell. We patients are given nibbles of hope every so often. Someone discovers a virus or abnormal brain imaging results or even a way to test the blood they think can further diagnostics and treatment. We sit and wait, holding our breath and praying for an answer, a way to make this whole nightmare go away. But until that happens we have to learn how to live with it. So in an effort to quit walking like an egg-laying mammal I think I am going to get off the computer and go do some yoga. Something I know can help me today. 

Thanks for joining,


  1. Exercise truly reverses fibromyalgia! It is the best & only medicine there is. If we have fibro, we must exercise. I also believe it has to do with nutrition or the lack there of. Exercise, diet, and supplements can and will reverse fibromyalgia in time.

  2. Hi Leah! Just want to say "I hear you loud and clear". I am also in a bad flare and at the moment it feels like I'm never going to be healthy again. I'm also starting yoga. It seems the best exercise to do. I used to run, then run a bit and walk in between and then just walk. Now I don't even do that to often. I wake up, take pain pills and just concentrate getting the kids to school and back. I had to downscale my life completely. I have hope though! Hope that someone will find a cure and fix me! Hang in there girl!

  3. I don't think it's as simple as to say that diet, exercise, and supplements will reverse fibro over time for EVERYONE. I think if that were the case, Leah would have been fully healed by now, because after reading her blog for quite some time, these are the paths I've seen her follow too, yet she flares up like the rest of us. However, PLEASE don't get me wrong - I believe those are essential components for everyone to try to get as much out of life as possible, fibro or not.
    I am currently in a horrendous flare myself. I find flares to be not only painful, but a highly discouraging time as well. Thanks for sharing your plight, though, Leah: somehow knowing we're not alone makes it more tolerable.

  4. The pain pills are the problem that is "downscaling" your life. Notice you went from running, then run a bit and walking, then just walking, now to just taking a pain pill upon waking. I only say this because I was there at one time. Get off all the pain pills, start an exercise routine and stick with it, change your diet, and find the right supplements that work for you. That is the cure! It is a nutritional change of life that will make all the difference. It is not an easy fix and it takes a lot of dicipline but it works. Pain pills are not the solution and they only lead to addiction where many find themselves suffering from it in the long run. we have the cure "Nutritional Change." I know because I got off all my pain pills, made the necessary above changes, and started exercising, and now my fibro is reversed. I can now run again!

    1. Hi Anonymous. Just want to say that I hate taking pills and only started taking them when I couldn't walk anymore. However, now that I am taking the medication chronically I have also started to do the exercises. I don't want to be on the meds, but for the moment it is my stepping stones to recovery, or at least management! Thanks for the input!

    2. While I also got off the pain pills after 11 years I would never recommend it to another person.
      Believe doctors and others told me to get off of the opioids and I just wasn't hearing it.
      It wasn't till I had a spiritual moment that it was time to stop and I had the support of my family.
      It took months before the withdrawal symptoms stopped but it's been a year now and I'm so glad I'm still here!

  5. Thanks for the comments and opinions! We all learn from each other but please keep in mind we all experience Fibromyalgia differently, for different reasons. It is with encouragement versus judgement folks are able to rise up and reclaim their life, to whatever degree they are capable. Thanks for reading friends!

  6. I found such peace when I was doing water aerobics and swimming, in our apartment complex pool. I would head out there in the morning and have the place all to myself.
    It was truly moments of zen because for that time I didn't think about my pain. Especially when I would be swimming underwater.