So I started taking a drug for my fibromyalgia. Yes, that drug, the one that’s in those commercials these days. At my rheumatologist’s recommendation, I worked up the dose from 50 mg to 125 mg over a period of 6 weeks. I couldn’t really tell if it was working for the pain (it waxes and wanes day to day – it’s the big flares that flatten me out of nowhere that are the worst) and I seemed to be tolerating the side effects well enough (some swelling, a bit of morning shakiness), so we upped the dose to 150, with the intention of taking it to 200 for a few months to see if it made a difference in the frequency and severity of my big pain flares.
Two days later, I had a very scary experience. I could NOT get up out of bed. My brain did not focus. My mom was having surgery and I needed to drive (and park) in downtown Seattle for her appointments. I was very late, and very freaked out. I had to keep blinking my eyes open and willing myself to concentrate. I felt like it was 3am after a long cross-state drive and I was trying to do just a few more miles. But it was 10 am. And I’d had plenty of sleep. I have never thought so hard about driving and parking and walking in my life.
I thought maybe it had just been a freak reaction of the Lyrica compounded with the couple few many capirinhas I’d had the night before, but the next day was even worse. I had the same staying-awake-after-taking-a-sleeping-pill-feeling, but instead of wearing off at about 2, it lasted until 4:30. And even scarier than being a danger to myself, all of Seattle, and my children by driving my mini-van? Was not being able to write. I sat at my computer, and what was in my brain was not what I typed. What was in my head, I could not put the right words to. I typed and backspaced and typed and backspaced and typed and backspaced and FREAKED THE HELL OUT.
At that point, I knew I could not take this drug any more. I did the customary paranoid Google search and found out that Lyrica was trying to kill me. Of course, according to the internet, my tap water is trying to kill me too. And, orange juice causes three-headed newts with purple glowing tails to grow OUT OF YOUR EAR. But this Lyrica? It can be some scary stuff. Turns out I'd been having more side-effects at the lower doses than I realized - like having conversations with my sister-in-law that I don't even remember.
My doctor’s office said that I could stop it altogether, assuring me that I was not on a large enough dose (!) nor had I been on it long enough for it to cause the Google-proven brain damage by going cold turkey. Or I could taper it over a week if I wanted to. That night I took a half-dose and slept from 7:15 pm till 8:45 am. I tapered one more day and then said, “forget it”. Today, I can sit and write and think my thoughts and my typing is only as crappy as usual and my writing only as bad as my normal brain makes it.
The clinical trial dosages are 400 mg or 600 mg between ONE and THREE TIMES A DAY! How anyone’s brain can work on that is a mystery to me. I’d rather eat nitrate-laden hot dogs, wash them down with fluoride-poisoned tap water, and munch some trans-fat-infused snack cakes than take THAT kind of risk. Or, gargle with radiator fluid.
I now have much more compassion for people who have to deal with horrible drug side-effects. Thankfully for me, I can manage my fibro well enough most of the time through an ever-changing combo of rest, exercise, significantly reduced expectations, heat, Mariner’s games, and tears. (Significantly-reduced expectations help with making it through the Mariner’s games as well, but that’s another story). Some people are in excruciating pain ALL THE TIME. Mine is low-level all the time, and only excruciating occasionally - the fatigue kicks my ass every day. People with nerve damage are grateful for Lyrica because they can actually function. I also know that for some fibro sufferers, Lyrica has been a miracle drug that gives them some function back. I hope the side-effects for them are less than mine were, and I also know their pain is much greater Yeah, the pain's been worse since I stopped taking it, but I'll take it over the alternative.
The biggest irony: the DAY I tapered the Lyrica was the DAY the FDA approved Cymbalta for fibro. I’ve been taking Cymbalta for a while now because it has two other components I already need (anti-depressant, and anti-anxiety) and I had read it could help with chronic pain. I'll stick with that.
posts
Who am I?