I haven't been blogging here as much as I'd like. I don't know where the time goes. Well, maybe I do. Fibromyalgia has changed my life and I'm still trying to get a handle on fibro.
When we last left this saga, I had enrolled in a drug study, leaving my body to science while I'm still in it. The study is a double-blind to discover the doseage of Cymbalta for fibromyalgia patients. It's a drug that's used for several different ailments, hence the need to determine the right dose for each. I would assume other studies are underway to determine the doseage for the other illnesses. But, then, you know what they say about the word "assume."
I was in the 6 month study for about 6 weeks, toughing it out as long as I could. It became clear to me after about 3 weeks that I was getting the placebo. There's a two out of three chance of getting the medication but I was convinced that I was in the other third, the third not receiving the med. Yes, there's the chance that I was but it just didn't work for me but it should have done something. It didn't. I felt progressively worse. Day after day there not only was no improvement but I seemed to be slipping backward.
Friends began to notice that I was different. Worse: so did colleagues. I thought I was doing a good job of hiding it. I don't like to bother people with my problems. After all, they're mine. And most people really don't want to hear it anyway. Their attitude toward everything from illness to grief is "get over it!" They don't want to deal with it and they don't want to deal with you if you have a problem, especially one that doesn't have an instant "cure."
An editor, upon hearing my voice on the phone, said, "Oh, my God, Darlene! What's wrong?!" I tried to pass it off as nothing but she would have none of it. A colleague said she noticed that I was gradually withdrawing. She wasn't the only one who noticed that. My best friend said that mutual friends had pointed that very thing out to her and wanted to know if I was okay. The answer, of course, was: no.
I've always been good at multi-tasking but I could barely handle one task. I was tired all the time. And stressed. And I cried easily. And, frankly, I wasn't happy with my own reactions. None of it felt right. And then there was the physical pain, exacerbated by the weather.
On Monday, I had my study appointment. I told them I was leaving. It was self-preservation. I needed real medication and I needed to start on it now since it takes about a month for any medication to really begin to work.
They understood and thanked me for my time in the study. I still had the study paperwork to fill out. And a bloodtest and a couple of other vital tests. I was started on two meds but not Cymbalta. Why? The doctor was perfectly willing to prescribe it but there's no generic for it and, frankly, I can't afford the drug that might best help. The dose is 1 pill for 10 days and then increase to 2 pills per day. One small bottle is $45. under my insurance plan. Nope, can't do it. I pay $710. per month for my PPO, and that's a Group plan. I had to join Small Business Service Bureau in Massachusetts in order to get that "bargain" group rate. It's hard enough to deal with that, let alone the added expense of the drug.
So, here I am, trying to find my way through fibromyalgia, left with the chore of finding the combo of meds and exercise that will work to help keep this in check.
Part of me feels like a failure, a quitter, but I know that I simply couldn't continue in the study. Six months is a short time but under the circumstances, it was forever.
Causes Darlene Arden Supports
The Marcia Polimer Abrams Fund for Canine Behavior Studies at the AKC Canine Health Foundation