Update time!

The Savella was awful. It didn't work. I was essentially a month without drugs. I thought it was all in my head, but....well, then someone sent me this link about a group pushing to recall Savella. Nope, not all in my head - it really DOESN'T work. They somehow convinced the FDA that it did, based on 2% of people benefiting from it over a placebo. Two percent? Really? That's...no. Not acceptable. And the risks? I wish I'd done more research on it, because I never would have taken it and wasted my money.

I also had an appointment with a rheumatologist yesterday, for the first time. I liked him well enough. He's not like my regular doc whom I adore, but as long as he fixes me I'll go with it. (Yes I know - FMS can't be "fixed", but it CAN be controlled.) We talked for a bit and he tested my reflexes, noting that my left knee doesn't have any. Why? Well, back in 2002 I drove about 20 miles in stop and go traffic in my truck, which has a very stiff clutch. I've always had problems when driving the clutch - my knee would ache. This time it swelled up. I ignored it the first night, but when I woke up it was twice it's normal size. I waited a week to go to the doc, on the advice of my father, and ended up in a brace and on crutches for about 3 months...while still driving the truck, since I had no other vehicle and I was single. Went through p/t, cortisone injections....nothing worked, and I still have some fluid above my knee, but they decided it was an "irritated fat pack". Joy. Fast forward a few years, and I have fibro. The doc thinks they might be connected...when he heard all this he said "hmm...and the plot thickens". :) He also figured out very quickly that my SI joint is extremely painful to even the lightest touch - there are days when my jeans make my skin hurt back there. So...Xrays of my SI joint area, left knee, ultrasound of my hands since they always feel swollen at night but have no visible swelling, and 6 vials of blood.

He said "Fibromyalgia is a diagnosis of elimination - once they test you for everything and there is nothing else, then you have FMS". This is not entirely true. You DO have to meet certain conditions in order to have FMS, and you can have it in conjunction with half a million other things. I think I know what he meant though. Things like low thyroid can mimic FMS. So can CFS. He thinks there may be something else going on in conjunction with the FMS, hence all the testing. I go back in two weeks for all the results. In the meantime, I'm back on Lyrica, which I tried 3 years ago. It worked really well, but I gained 20# in less than a month - not good. I started it last night...and this is my new theme song until the side effects go away:

Fibromyalgia Awareness Day

Today is Fibromyalgia Awareness Day. In recognition of all those who suffer, silently and not so much, wear purple. Talk to people. Put up posts and threads in the forums you visit. Dedicate your Facebook status for a little while or join the awareness events going on. Help spread the word that this is out there, it is real, and people do need to be educated. Take these photos, put them up somewhere.

A new medicine

I went to the doc on Thursday because I've been having issues with my brain and pain meds not working as well as they should. We are going to try me on Savella, which is the latest drug that has been approved for fibro. According to the leaflet that comes with the med, the ONLY thing it's used for is fibro - that's a change! What I didn't know is that it is a titration pack to start - I hate those. Easing into a drug should be easier - why would I hate something that does that for me? Well, because it means that instead of the side effects being gone in a few days (typically) I'm going to have them for probably close to 2 weeks since the dosage keeps increasing. There's also no generic, because it's so new, so even with my insurance it's going to cost $45 a month just for this med alone! At least it takes place of two meds (which, together, were less than $20...)!

So far we've got nausea, dizziness, irritability. About par for the course - if something has those side effects, I'm going to get them...same with sleepiness. I also feel like I'm choking, which happens if my clothes get too close to my neck...only they aren't. I just feel like it from time to time. *deep breath* If it works, it will all be worth it.

Doc is also going to send me to a rheumatologist. He feels he is reaching the end of what he can do for me. I feel bad for him - he's done so much for me over the years and it must suck to have to admit that you're out of options for a patient. Don't get me wrong - he's still my go-to doc for everything else! I followed this doc from clinic to clinic - I'm not leaving now. I just want...well, not fixed but better than I am now.