Health care….and Sick care.
Today’s post comes with a lot of frustration. I spent the morning going from my primary care manager (pcm) to my current pain specialist to request records to forward to my soon to be new pain doc, who can’t get me in for almost a month. So, all I got was a bunch of running around this morning, not accomplishing anything….not soon enough anyway, and a whole lot of frustration and the reminder that so many people don’t understand Fibro, and often don’t see it as a real condition.
Fibromyalgia (fi-bro-my-al-ja) can run from mild tenderness to excruciating pain. Symptoms can include irritable bowel issues, muscle weakness and tenderness, fatigue, cognitive “fog”, and in my case oxygen issues. (http://www.fmaware.org). Stress exacerbates the condition, which is brought on all too often by others judging and misunderstanding what sufferers go through.
The research is now starting to take off with Fibromyalgia, so to date there is only a few “FDA approved” medicines for Fibro, and essentially no known therapy. I have run the gamut of meds, both designed for Fibro and what they call off label – used to treat something besides the originally intended condition. Unfortunately most of the meds aimed at treating Fibro are SSRIs or SSNRIs: selective serotonin reuptake inhibitors. Some with norepinephrine as well. All of them mess with the chemical balance in one’s brain, and none of them like me. They make me worse.
The other options I have tried include nerve pain medications, often used for diabetes nerve pain. Lyrica did work for me, and brought my everyday pain back down to a manageable level, but it boosted my cholesterol up 40 points, and that wasn’t okay as a side effect. Neurontin did not agree with me at all.
So, I am back to traditional narcotic pain meds right now, and hoping for a couple of different procedures to cauterize the nerves in my neck. Meanwhile, I am in the process of switching pain management specialists right now because my current doc hasn’t provided care. He was supposed to have scheduled my next procedure in 2 1/2 weeks after giving me botox shots in my neck that have made my pain much, much worse. I had 4 shots of botox in my shoulders and neck in the middle of March and have been in a lot of pain since. The procedure was supposed to loosen those muscles, but it has the opposite effect, and no one knows why.
I have spent a good portion of the last 8 years fighting to be heard and treated with dignity, instead of being blown off and told it’s all in my head, and all I need is some “gentle exercise”. This morning was just a reminder that my work, this blog, and my efforts to raise awareness and understanding ARE needed. Not enough people understand what living with Fibro is like.