Friday, November 16, 2007

How I came upon the fibromyalgia diagnosis

So, my path to getting diagnosed as having fibromyalgia was kind of strange. I'm going to talk about it.

I'd been having bad back and neck pain for a long time. My breast reduction didn't make it significantly better, and physical therapy didn't do anything. I spent a lot of money I didn't have on PT before we finally agreed to stop throwing good money after bad.

After my surgery in '04, where I had an ovary, fallopian tube, and part of the uterus removed because they were encased in cysts, and the ovary was being torsed (twisted), causing intense, horrific pain, I started feeling achy all over. It wasn't just my joints, as previously (I have some arthritic joints), but it was in my muscles, with lots of fabulous headaches.

One day, I had severe abdominal pain that was as bad as my agony from the ovary incident, and almost as bad as the gallbladder one. Having required emergency surgery in both cases, I had Brian take me to the hospital, where I got tests and pain medicine. They pumped me full of Demerol and phenergan, which eased my agony. I drifted while the tests were done and analyzed. The doctor came back saying that they couldn't find anything wrong except for some scarring on the lungs, which he said could be from rheumatoid arthritis. I was sent home with a pain medication scrip and told to see my doctor.

My doctor put me on a round of prednisone to help with the lung, which he said was "partially collapsed". We talked about the pain, and he had a bunch of x-rays ordered and some blood tests. He finally concluded that I had fibromyalgia, since everything fit the symptoms. I got pain medication for the days when things were bad, and he put me on Cymbalta to help with pain and anxiety.

I resisted this diagnosis because, having known several people with fibro, I didn't want my life to change. I was working on becoming a field biologist, and if the pain I was experiencing continued, it would prevent me from doing that. I was already too tired and pained to do a lot of it. Eventually, though, I accepted the diagnosis, and conceded a few things.

The pain that sent me to the ER? I now recognize that as a bad muscle spasm. I get them from time to time, where they start in the back, and before long, I feel like something is stabbing me in the gut. Now that I know it's in the muscles, I can do some stretches and take a pain pill. Once the pain pill kicks in, the muscles slow down their tightening because it's the pain that makes them get worse and worse. Once it gets bad, it's really hard to tell it's a muscle pain, because it refers pain all around.

It wasn't until I got a different doctor that I finally got a thyroid problem diagnosed, and I'm still in the process of increasing the dose of Levoxyl to the right level. Apparently, with fibro, the TSH test doesn't always work because there's a feedback loop (or something like that) which prevents the TSH levels from getting high.

And so, here I am.

1 comment:

Khurt Williams said...

My wife was diagnosed with fibromyalgia a few years ago and our lives were changed forever. I am developing an online community for people suffering from fibromyalgia. The online community, “You're Not Alone” ( ), will allow members to participate in fibromyalgia-related discussions in the Forum, share their thoughts and ideas in their blog, and post their personal photos and videos. There is no cost to join. Members of the site follow a simple process to create their profile page, which they can later customize including a profile photo and additional details about themselves. I created the project while participating in a Landmark Education leadership program. Part of the coursework was to create a project that benefits the community. When I had the opportunity to create a project that would make a difference in the community, it was only natural that my wife's illness would be the inspiration.