Fibromyalgia Suuuucccckksss

Another week gone by and no posting. AH!

In truth, I haven’t been blogging as much due to my hand pain… which I’ve just found out is fibromyalgia after months of complaining of hand pain and pain in the hips, inner knees, neck, etc, etc, etc. I think part of the problem is I tend to see my rheumy and then her NP and then her again and so forth. I also think that my rheumy, while awesome, has some selective hearing in that she hears the complaints she thinks are vital to address and ignores the others. Kathy, her NP, is a little better at looking at the things I feel are important. I also feel like we tend to get along better and, as the wife of someone with chronic pains, she seems to understand me more.

YAY!

So I met with her on Monday to evaluate what was going on with me after a note I sent to my rheumy regarding my latest health issues and huge amount of pain. One of the things I’ve learned about Kathy is that she also appreciates my experience with my illness and so if I bring in evidence – a picture, notes, etc – she is more apt to look at them. I spent Sunday night writing up a two page list of what was going on with me, highlighting the most important things to me first. She took the time to read, highlight, and ask me to expand on my carefully worded bullet points. She then took it and made it a part of my medical file all without me asking her.

I seriously love this woman.

We went through a very thorough exam, where she meticulously checked my hands first before moving onto a whole body exam. I had some swelling in my left wrist and another lower body joint I don’t remember. However, she also checked the trigger/tender spots for fibro and the majority of them were tender – and some hurt so badly that I yelped. And I have a pretty good tolerance for pain.

She ordered a ton of labs to make sure that it wasn’t anything else and also had me get a kenalog shot right in the butt. My tests all came back clear, with the exception of my sed rate which is always high and my CRP which, until now, has never had a value attached to it for me.

I also got some gabapentin to start taking. I was nervous about this med at the beginning because I had done some research for a friend and her daughter on it. But now I definitely have different thoughts. I’m only taking it at bedtime for now and while I feel that it’s helping I a) can’t super tell if it’s helping because then I go to bed and am not using my hands and such, and b) still am waking up very groggy to the point where I’m tripping over myself and basically am asleep while trying to put myself together to drive the boyfriend to work and whatnot.

But tomorrow I will conduct an experiment. Instead of taking only 100 milligrams of gabby (my new drug street name, you like?), I’m going to also take a dose during the daytime to see how drowsy it makes me. If it is really helping my body not hurt as much, there is no place that needs to happen more than at work – where I spend the bulk of my day like friggin’ typing. Oy.

I miss my pain the way it was when I was younger. It was mainly in my lower extremities, so I learned to do more with my hands. Instead of going out to play with a swollen knee, I fell in love with trivia computer games and such things. Now even that is hard for me and it is really tough to handle. I can’t really run away from my illness the way I used to be able to. I actually have to admit that I have a disease – well, now 2 diseases – that very often cause disability. I don’t like that thought at all as a 24-year-old.

Ugh.