Let’s talk about the darker side of fibromyalgia pain, shall we? My fibromyalgia causes me to experience allodynia. Allodynia is a type of pain, usually on the skin, that is triggered by something that wouldn’t typically cause pain.
Earlier, I got out of the shower and my towel hurt me. Yes, you read that right. My towel hurt me. And I have some of the softest and fluffiest towels a girl can buy! I was getting dressed afterwards and the skin on my shoulders felt like they had a dry, itchy sunburn and someone was scratching it. Why? All because my shower was hot and that temperature irritated my affected skin and now I’m paying the piper. My allodynia flares up in several forms.
There are three kinds of allodynia. Some people, like me, have all three. Which, can’t we just win the lottery if nature’s giving us those odds? Anyway, others may only have one or two. The three kinds of allodynia are tactile, mechanical and thermal.
Tactile allodynia is pain triggered by touch. For example, tight clothing pressing against the skin. Mine is triggered by anyone touching me lightly, usually on the arm. Even hugs can be a pain stimuli!
Mechanical allodynia is caused when something moves across our skin. Remember how my toweling off caused me pain? Our bedclothes brushing against us while we sleep can be a trigger. I have friends who can’t be under ceiling fans with exposed skin, as the air blowing down hits them and gives them a flare-up.
Thermal allodynia is pain resulting from heat or cold. I feel a burning sensation in my extremities if they get too hot or too cold. A lot of individuals like to put one foot out while we sleep. Those affected by thermal allodynia will note their foot might itch and burn from the pain of being exposed to temperature-related triggers.
Those of us with fibromyalgia are familiar with being told our illness is caused by our body being hypersensitive to stimuli. Allodynia is caused by a similar reaction to stimuli. In our case, it’s our skin reacting. The pain signals of allodynia come from nociceptors. These nerves sense things like painful stimuli on our skin and temperature. They’re the nerves that cause us to pull our hand back so quickly if we accidentally touch a hot stove. So these nerves become hypersensitive in people with allodynia. Basically? Our skin thinks everything is a hot stove.
I can change clothes so my skin doesn’t hurt. I can adjust the thermostat to avoid the trigger. I can turn off my ceiling fan. What I can’t do is change myself. This is who I am.
Living with fibromyalgia-related allodynia is very difficult. I’d say I was surprised by people who think “I’m being dramatic.” Well, give me a crown and call me a drama queen because this is my life. And the lives of so many others! Those with neuropathy, complex regional pain syndrome, postherpetic neuralgia, fibromyalgia, chronic fatigue syndrome and migraines are also afflicted.
We have to dress in layers, ask to move away from vents in restaurants and tailor our workplaces (when we can work) to account for every pain contingency. We work with our doctors to find treatments that work. Some do and some don’t, and some work for a while and stop. Trust me, we aren’t looking for attention. We don’t want to be seen as dramatic or “extra.” We’re just people in pain, looking for a little empathy.
In the meantime, I’d ask for a hug, but it hurts.