I am adjusting to having fibromyalgia.
By Lisa Macafee
Fibromyalgia occurs most often in autistic women survivors of sexual violence. If someone tells you they have fibro, there’s a chance they are also telling you those things.
Doctors still can’t really define fibromyalgia, but basically our brains, under too much stress for too long, mis-wire sensory signals as pain signals, so things that normally are not painful, are.
In 2020 I started seeing all kinds of doctors to try to help me get my life back. I was getting migraines 3-5 times per week and had pain and fatigue that made it difficult to do anything and was only able to sleep 5-6 hours per night before waking up in pain, usually also with a migraine.
For those who don’t experience migraines, they are an increasing headache and mental sluggishness that rises eventually into chronic vomiting. Basically it feels as though my skull in in a vice that slowly compresses until my cognitive ability declines into mumbles and madness. Without a Sumatriptan prescription, I would be on disability, unable to work. Thank you modern medicine!
When my father died in May, I thought I had covid (I did not), because I was so fatigued and in pain that I couldn’t even sit in a chair for more than an hour or two – I had to lie down for the majority of the day. It turns out that fibromyalgia “flare-ups” are an awful lot like the flu with body aches, pain, and weakness. Flare ups are most often brought on by stress, ha ha, as if the life stress is not enough, your body shuts down.
For me, the weird fibromyalgia things that cause migraines (in addition to typical triggers) are wearing clothing on my upper back and having too much hair. Yup. Sounds like a lunatic talking right there, but here we are.
I have re-arranged my entire wardrobe. I’ve bought super low-neck shirts and wear them backwards or cut the backs out of my shirts. Every so often I decide that this has got to be unreal and try a “normal” shirt and get a migraine within two hours of wearing it.
I started cutting my own hair. I shave the bottom half off and have started cutting the bottom off a ponytail to keep the rest short. I know when my hair gets too long because I start getting migraines every day, as happened to me this week (I cut my own hair yesterday and feel much better – less weight pulling at me).
I started getting a monthly Emgality shot that prevents most migraines except for the weird fibromyalgia ones (shirts and hair).
I was prescribed a light muscle relaxer to take every night before bed and it allows me to sleep through the night without waking in pain or migraine, allowing me to get enough rest to feel better and not hurt everywhere the next day.
These are huge victories. I still have one or two migraines per week, but compared to 66% of days previously, it’s awesome!
I am learning to give in to the weirdness of fibromyalgia and have felt a lot better for it, but it’s a lot of extra layers of bullshit and I’m tired. I will likely be disabled enough in the future that I am unable to work. Chronic illness is for suckers, don't get one, okay?
Hello friends! I would like to publish writings from myself and other people with autism as snapshots of how autism has affected them, since there are so many misconceptions and confusions about adults with autism.
Some background: I completed a 12 unit certificate program to be able to serve autistic students and am angry at how the program focused only on little boys as autistic and completely left out adults, the trans autistic population, and girls/ femmes/ women autistics. I am currently pursuing a PsyD to do more research on autism and gender.
Please contact me if you would like to add a story! If so, please send me your piece, publish name, title, and an image (can be a picture related to your content, your picture, an autism meme, etc).
I am interested in publishing this collection, because people don't know enough about us (but sure do assume a lot). Also on Facebook!
Lisa Macafee, autistic counselor with a hankering for social justice.