I’m currently having a mast cell flare. Not a mast cell reaction, which is an acute anaphylactoid event, but a gradual increase in my symptoms which, for me, results in hives (your end result may be totally different).
Looking back, this flare began about 2 months ago with insomnia. I never sleep particularly well, but when I flare I start waking several times a night and really struggle to get back off. Consequently my fatigue is ratched up a notch or ten. Insomnia was my very first ME symptom (I’d always been a superb sleeper until then) and now I recognise is a sign that my histamine levels have increased.
Then my bowels get sluggish. Instead of pooping every day after breakfast I’m down to every other day (sometimes every third day) and at random times, even the middle of the night. Of course, having my poop backing up in my intestines leads to colicky pain, bloating and ultimately more heartburn. Yay.
At the opposite end of the spectrum my urine output triples. When I’m in a good patch I never have to get up in the night to pee, but during a flare I’m up and down like the proverbial bride’s nightie.
I’m either totally nauseous and unable to eat a thing, or ravenous and chomp through food like the Hungry Caterpillar. I prefer the chomping, and am currently eating myself out of house and home. In the past couple of months I’ve gained 4lbs and my jeans are getting uncomfortably tight. But that’s OK. I know for sure at some stage in the future I’ll be sick to my stomach and lose it again.
Next comes the sneezing and the annoyingly itchy prickly nose. During a flare the first thing I do when I wake up is sneeze and I spend all day rubbing my nose until I look like Rudolph’s older-yet-better-looking-it-has-to-be-said sister ;-)
My skin also gets more prickly and itchy and tends to welt easier. If I kiss my dog I spend the next hour feeling like my entire face is being tickled with feathers. Trying not to kiss my dog is futile, being as though he’s the cutest dog on the planet.
And finally, 2 months on, my butt hives have appeared. Itchy little fuckers.
I had no idea why I was flaring until I started writing this blog post and had a Eureka moment – my hip started hurting 2 months ago! I have pain, severe inflammation and of course my body is producing an immune response to the situation, so I’m now thinking this probably has a lot to do with why my mast cells are currently behaving badly.
I don’t do anything hugely different to cope with a flare, although I make sure I’m really strict with my diet. I use prescription steroid cream on my hives (the only thing that works) and try to keep on top of washing my bedding to get rid of Bertie’s dander (don’t always succeed!). I also do try to rest more, as histamine for me is a potent simulator and I often feel I have waaaay more energy than I actually do. So I tend to do more, which makes me more exhausted, and stimulates more histamine, which ramps me up, so I do more………..and a vicious cycle develops. Got to admit, though, I find it incredibly hard to rest when I feel so energized and it still amazes me that I can be so tired, yet so wired, all at the same time!
I finally saw my physio this week (more on that in the next blog post) and am hoping in the next month or two I can get my hip bursitis to calm down, which should also calm my mast cells down. Famous last words ;-) .