I blog openly about my mental health issues, and I think occasionally I mention that I have Fibromyalgia, a disorder that causes widespread pain and fatigue, as well as memory, concentration and sleep issues. One of the fun features of this condition (aside from the many friends it can bring along, like IBS, Interstitial Cystitis, Raynaud’s Phenomenon, depression, anxiety, and suicide) are “flares”, when your symptoms go from sucking on a daily basis to sucking five times harder on top of all five business days of sucking you’re already experiencing getting stacked on you all at once. It’s not great.
A lot of people in my life will hear me say, “I’m having a flare,” but I don’t think I’ve ever explained what that means. I’m going through one right now. It started last night, and I thought, “I should really pay attention, so I can tell people what happens and how.” So, here’s what happens when I have a Fibromyalgia flare. Other people might experience symptoms in a different way, this is just what happens to me:
1. I notice my face feels hot, like I’ve been out in the sun a little too long.
2. My fingers and feet swell up, and the joints become red and swollen.
3. That hot feeling in my face spreads through my whole body. It feels like having a fever, but if I take my temperature it’s normal. I still get chilled like I have a fever.
4. Raynaud’s Phenomenon makes my feet cold. They take on a bluish tint and hurt the way your hands hurt after you’ve played in the snow without mittens all recess. Socks, hot water bottles, etc. are kind of ineffective at this point, but I always try.
5. Fatigue. My entire body feels heavier. Today, even lifting my arms up to type has been a challenge (some days, it’s not even possible, or my hands hurt too much, so I use Dragon Naturally Speaking to do my work).
6. And let’s not forget pain! All of these symptoms come pretty much in this order, one right after the other, but sometimes I don’t realize I’m having a flare until the pain ramps up. My bones feel like there’s something that’s inside of them trying to push out. My muscles ache like the first day after a hard workout. When you have Fibromyalgia, there are specific spots on your body (and they’re basically the same on everyone) that are always painful to the touch, but they become super sensitive during flares. I would describe the sensation of triggering one of these areas as getting an electric shock, followed by a lingering, burning pain. Sometimes, just your clothes are enough pressure to cause this.
7. The pain causes lack of sleep, as well as lack of focus. If I can sleep, it’s not well, and I wake up tired. This contributes to my difficulties concentrating or communicating well. I end up reading the same page over and over, or starting to write something and wander away for a while, only to be surprised when I come back and realizing, oh, I didn’t finish that thought. I started writing this relatively simple post at 11:00. As I write this, it’s 12:21, and I’ve written 536 words.
Most of these symptoms are alleviated by marijuana, which (given my history of destructive, opiate-related behavior) is the only pain medication I trust. The only things it doesn’t help with are swelling, which I take ibuprofen for, and Raynaud’s, because what the hell even is Raynaud’s? Why does it do that? But yes, it even helps with the brain fog and concentration, depending on which strain you get.
If you suffer from Fibromyalgia, I’d be interested in hearing if we share any of the same symptoms during a flare. Sometimes, because of the attitudes toward it at the time I was getting diagnosed (and those are thankfully getting better), I still wonder if we’re all just making it up. Which is absurd, but when you hear it from doctors and random people who think the problem is that you’re not doing enough yoga, you start to doubt everything. Anyway, share in the comments, or if you have any questions about Fibromyalgia, just put them there, too.