Tuesday, September 4, 2012

If I Only Knew

I had an opportunity to not get Fibromyalgia, a fact of which I both remind myself of and kick myself over a lot less now than I used to. About a year before I got Fibro I came down with something else, something years of exhaustive testing finally revealed as CFS/ME. But by the time I found out what it was I was too late. Instead of respecting the limitations weird crashes of fatigue and pain inflicted on me over the course of that year I did what I was taught to, ignored the clanging symbols of my failing health and pushed through. I couldn't find a doctor to take me seriously and became overwhelmingly frustrated so I ignored it, hoping it would just resolve itself and go away.

Well it didn't. And all that time pushing myself to meet the expectations healthy me had trouble meeting gave the virus infecting my central nervous system ample time rattle around and damage my nerves. So now in addition to CFS/ME I had Fibromyalgia. The sick part is I eventually got treatment and am in remission from the very specific subset of CFS I had, but not Fibro! Nope, that rat bastard is here to stay. Now part of me believes Fibro was inevitable, something I would've gotten anyway at another time for another reason at some point in my life. But that other part of me, oh lets just say I have to hurl buckets of grace and forgiveness at her so she'll shut up and quit floggin' me in the back. We are still trying to become friends.

Now I can see with the 20/20 vision of hindsight how stupid I was. Hell, when it was happening I knew it was stupid. But I didn't imagine I was sick with something my doctors couldn't find, didn't know about or have a way to treat. Or would last me my whole life long. What would I have done different, had I known? Our world is hard and demanding. When I got sick I didn't challenge my lifestyle, I challenged my illness. I didn't know I could challenge my lifestyle, it seemed set in stone. It's taken many years to finally recognize my illness ain't goin' anywhere no matter how much I rail against it, so my lifestyle had to change. I get a lot of outreach from fellow patients desperate to know what to do with this diagnosis and terrible disease. How to get better and fix their health so they can fix their lives that are rapidly disintegrating before their very eyes. For me there's been no quick fix, only sweeping and drastic lifestyle changes I implemented one at a time. With much trial and error, buckets of hard work, amassing a tremendous education in health and the human body, topped off with that precious ingredient of self forgiveness.

Thanks for joining,


  1. Love this, and I can so relate! Like you, I suspect I started with CFS and fibro developed later, but the doc missed it and so did I, he diagnosed me with Fibro and sent me on my way. NOW I have symptoms of fibro and full blown CFS, symptoms I didn't have when I was diagnosed in 2005, when it was really more consistent with CFS.

    Coulda woulda shoulda, I put myself through this shame for quite a while. Especially getting no validation from the medical community I just kept going on with my life. What's hard for me is seeing people with the beginning symptoms who may have a better chance, but they keep pushing their bodies and minds without realizing what's coming in the future. I too pushed myself and ignored many symptoms until my body finally said enough. Thanks for sharing your story, it helps to know I'm not alone!

    Mary Ellen

  2. I have been going to drs for 20 years complaining of being in pain, being incredibly exhausted, not sleeping well etc. Every one of them told me i was depressed and stuck me on an anti-depressant and sent me on my way. I was just "officially" diagnosed with Fibro about 3 months ago. Now in more pain, even less energy and sleeping way less than I did 20 years ago. I knew it was something more than depression.. but, could never find a dr. that would listen.

  3. I am currently seeking treatment waiting for the doctor to establish that I have fibro. I carry all the symptons and after ruling out rheumatoid arthiritis and lupus they've decided it could be a vitamin D deficency OR fibro. I'm over here barely making it through an eight hour day feeling so tired and having such intense body pain and yet for the next two months I'm stuck on pills for Vitamin D when I'm trying to look at the bigger picture.

    I'm glad to know I'm not alone but I'd love to know what drastic health and lifestyle changes you made. I'd love to get started so I can help myself.