Wednesday, April 24, 2013

I Want To Know!

Lately I've been feeling, dare I say it, improved. Now don't get me wrong, it's not like Fibro is gone or anything, but my good days are better than before and bad days aren't as frequent. This step-up in my quality of life has stimulated a whole new cyclone of thoughts whirling around my head. I wonder how I survived the last eight years. I seek to understand where I found the strength to haul myself through and out the other side. I pray I keep going in this direction. But perhaps the most important question of all is what on earth did I do that actually worked? I know I changed my entire life, worked very hard and refused to give up. Is it as simple as that? Or are there other factors at play here? 

Fibromyalgia is as individual to each patient as the person is themselves. While there are many shared symptoms the severity ranges from bothersome to completely incapacitating. Why? How come some patients suffer from inflammation yet others do not? And why on earth do some get better while others can't leave the house? Science and medicine cannot answer these questions yet. Many frustrated doctors leave patients to figure it out for themselves, which hardly seems fair. I wasn't content to let the concept of fairness supersede my quality of life and attacked this beast like a rabid dog. It worked for me, but that's just me. I think it might do the patient body some good to explore what we do know instead of focusing on what we don't. Fibromyalgia is a syndrome. This means they know the symptoms it causes, but not why it happens. Could it be there are as many different causes as there are stars in the sky? Is it simply the mechanism allowing permanent damage to the central nervous system we share? I have to say after talking with thousands of patients I think so. And not just because I want to prove the person who just told me I got Fibro from eating wheat wrong. Even if that is a mighty big motivator.

My root cause is viral. I've seen enough specialists, received enough treatment and lived with it long enough to recognize this truth. My flares consist of a specific set of symptoms not present when not flaring. All my autoimmune tests come back negative even though my immune system can't seem to get a handle on it. But that's just me. When I first started blogging and networking with fellow patients I thought I knew all the answers. I'd managed to reclaim my life from the hell of unmanaged Fibro and believed strongly in what I'd done. And that it would work for everyone else if they just put forth the effort. Ahhh, the blissfully ignorant position of sitting in right. It didn't take me long to realize I sounded like a sanctimonious ass. For unless a person lived my life, shared my root cause, received the same treatments I did and changed their lifestyle in the exact same way, I couldn't insist what worked for me would work for them. There is simply no way to know this, yet. Is it possible we the patients could advance our cause drastically by getting on the same page, and that is that we don't share a single root cause and therefore experience this illness differently? Once again I have to say I think so.

Thanks for joining,


  1. I think we all experience this differently, and think our power lies in giving each other space to have a different time of it. Judging others and what they do/don't do to manage their fibro is what we get from those who don't have it- not from each other. Reading other's blogs has helped me relate, not feel like such a freak, and find out new information and strategies. I appreciate this posting, and your willingness to share so openly. Kudos.

  2. I know that when I see posts from other fibro patients I see that nearly everyone has a unique combo of things that help them. I just got Radio Frequency Ablation (nerve burning) to help with my chronic pain. However, if the coming relief only lasts 6 months instead of 1 1/2 years, and our insurance copay is several thousands of dollars, I probably won't do it again.

    I spent over 5 years doing alternative things, herbs, supplements, chiropractic, then for over 5 years went to prescription meds, chiropractic and massage therapy. No one thing has helped, just about every thing helps a little. Even eating right and exercise. And too much physical activity has made me worse.

    I think you are right about the actual causes. I had fibro in a much milder form for 15 years when I contracted mono, and the following 15 years have been devastating. I have never felt really good since. My definition of good would be someone else's definition of feeling crappy.

  3. You guys are so much better at talking about this than over in the UK. I've looked so hard to find a blog with a sensible and positive outlook and yours is brilliant.
    Thanks pickle!