when you finally get diagnosed
I have always suspected I had fibromyalgia or connective tissue disorder or some other auto immune disorder that doesn’t show up in bloodwork or on any scans. But is a diagnosis of elimination is what my GP would call it and I don’t really even think it is that. It is what it is- it’s pissed off nerves that hold on too tightly to something for far too long then get their signals crossed and set something off. I may have very simply explained a very complex disorder or may have greatly made it more difficult to understand.
When explaining it to a co-worker one day, and having read it myself- Fibromyalgia can be triggered by traumatic injury. I had such an injury- I’ve actually have had several. But I can trace a lot of the pain and even migraines back to this one event. So while I could see her trying to grasp the intricacies of the disorder, she finally looked at me and goes “oh so its kind of like PTSD for the body?” Yes. It kind of is. The way the body reacts to stimulus and the way the nerves fire off differently than one without fibromyalgia could be the way someone with PTSD reacts to a triggering word or event. At least that’s how I feel some days. Someone reaches to touch me and my entire body tenses up for this painful moment- I know in my brain it shouldn’t be painful, this little touch, but it will be anyway.
I had finally gotten into my appointment that took months to get at Duke Pain Clinic. They sent in the resident with the intern, and he took my whole history and he was very attentive to everything I had to say, and put me through what I can only describe as minor torture. I would have told him more if only he asked the right questions. Then the doctor came in and she went over again briefly what the resident had come up with. She concluded that my symptoms over the years amounted to fibromyalgia. we talked about how my GP “protected” me from the diagnosis, and came up with a treatment plan. She increased my dose of Cymbalta and took me off all the anti inflammatories I have been taking for the past 7 years as I don’t have an inflammation problem per se I have a nerve problem. Well, as with anything stopped cold turkey comes the super fun withdrawal.
I felt like shit.
Tried to go about my day, but 24 hrs after my last dose of naproxen, (which I was up to 1500mg at this point to basically mask the pain) I had the dizzies and tried to go to work. Nope. Brain had a different plan. I had to pull over and throw up. Made it back home (only had made it about a block) and called work and told them to go on without me … they should be ok. Crawled back into bed and tried to sleep. Kept jerking and shaking but finally got to sleep and slept. As I’ve said before, sleep is the absolute best medicine. Surgery? Sleep it off. Migraine? Sleep it off. Bad day? sleep it off!
Yesterday I managed to make it to work … I still felt like something Satan’s dog threw up on the sofa but I was good. Shaky and medicated with caffeine. Today was better. Still working on getting to a “therapeutic level” with the Cymbalta but once I’m there I think I’ll be ok. And once my sleep patterns level out and get normal (what is normal for one who doesn’t sleep?) I’ll hopefully learn how to function better.
Things are actually starting to look bright. Not an endless cycle of dreariness and sleepless nights!