Hi everyone,
Yes, I'm a newbie and not afraid to admit it. I have been lurking around for a few weeks, though, and have really appreciated the threads I've read. The support and comradery you feel for each other makes this feel like a very welcoming place. Kudos to the moderators for that.
Anyway, to the point. Obviously I have fibromyalgia. Was diagnosed last May, finally, although how long I've had it seems to be in dispute. The Nurse Practitioner who first recognized the symptoms and started the process for a diagnosis says I developed the condition 2 1/2 years ago. If nothing else that's when it started to fully present itself and began affecting my life. The reason I question the timing is because severe muscle spasms in my neck were first found in 2003, I've had a strange, undiagnosable pain in my ribs since 1999, and the pain in my back which has intensified over the last 2 1/2 years first appeared 20 years ago. Since no one has been able to explain any of these pains, I have to wonder if they aren't also part of the FMS. Not that it really matters, I guess.
The Rheumatologist who confirmed the diagnosis also diagnosed me with Ehlers-Danlos and TMJ. TMJ didn't surprise me at all since, among other things, I tend to wake people up with my teeth grinding at night. Of course Anxiety (diagnosed in '99, along with Depression) doesn't help that, either. Oh, yeah, and I have a partially collapsed lung that's been there since at least '99. No idea where it came from, but since it isn't getting any worse and doesn't affect my breathing, leaving it seemed a better option to trying to repair it.
So far I consider myself very lucky, especially after reading posts from other patients on this and other boards. I am still able to work, although that is, in part, due to a wonderful, understanding boss who is willing to work with me on attendance and job duties. We also seem to have gotten my meds under control, at least for the time being, and, while they help, they are neither 100% effective nor lasting. Still, I am able to push past the pain most days and continue doing what I have to do, and that's a major improvement over my pre-diagnosis state, so I'm grateful.
What do I take? Well, thanks to the mystery rib pain I've had a running 'script for Norco and Flexeril since '99. For most of those years, though, I took them very infrequently. I'm talking 4 or 5 a year. That quickly increased to 4 or 5 a week, then 1-3 a day when the FMS appeared / ramped up 2 years ago. I've also been taking Xanax for several years to control the panic attacks and anxiety. The Rheumatologist added Neurontin in May, starting me at 300 mg a day. That's up to 1800 in two doses now. The Nurse Practioner also put me on Ultram, which was useless, and Cymbalta in March. The Cymbalta helped quite a bit, but still not enough to outweigh the side effects, so I stopped taking that in October. I wasn't surprised since I've had the same bad reaction to anti-depressents in the past.
As I said, I feel better now than I did before I got a diagnosis. I'm sure this is partly due to the medications, but I also think a lot of it is simply knowing. I admit, no matter how many doctors told me there was nothing wrong, I couldn't stop worrying about how bad it might actually be. But I definitely don't feel like I have a handle on it. I still feel like I'm just trying to keep up, making it through each day and worrying about what tomorrow will bring, wondering when the hammer will fall, when the symptoms will get so bad I can't push past them any more.
So, that's my story. If I'd known I was going to go on this long, I would have brought some water. Thanks for listening and understanding.