by Lisa Macafee
I am writing this with a heating pad on my shoulders, having already taken an Aleve (do these things ever work?), and have had a migraine for the last four days running. I have a generalized pain, stiffness, and soreness in my shoulders, upper back, and neck that just doesn’t seem to go away and slowly builds as the day goes on to a migraine. This is Fibromyalgia for me.
The Mayo Clinic says “Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.” Migraines “can cause severe throbbing pain or a pulsing sensation, usually on one side of the head. It's often accompanied by nausea, vomiting, and extreme sensitivity to light and sound. Migraine attacks can last for hours to days, and the pain can be so severe that it interferes with your daily activities.”
As far as I can tell, fibro happens most often in autistic individuals. When I was being diagnosed, the Rheumatologist was hemming and hawing over my chart until I mentioned that I was also autistic, to which he concluded quickly that I have fibro. Because apparently these symptoms + autism = fibro. Our neurology seemingly misfires and sends signals of perception down the wrong wires, things get sent off incorrectly, and we have pain and exhaustion instead of noticing that we need to change positions or are cold, for example.
The pain. It’s in my shoulders almost constantly and while normal things like hugs don’t bother me in the slightest, wearing any kind of clothing touching my upper back, neck, and shoulders will 100% result in pain, disorientation, and migraine.
That sounds silly even to me. How could wearing a shirt cause migraines? I don’t know, but what I can tell you is that I’ve started cutting the necklines out of all my shirts and wear them backwards. Today, for example, I was wearing a backwards shirt, but the back wasn’t quite low enough and I started getting pain in my shoulders and neck. I took an Aleve and used a heating pad for 2 hours and cut an extra half inch off my shirt neck and I was able to curtail the pain and not get a migraine.
The problem is that I can’t always do this. At work, I can’t always cut the neck out of my shirt. I’m supposed to dress professionally, after all. What kind of professional wears all their shirts backwards and cuts the backs down to their bra straps with scissors in the restroom? How insane do I sound to you? I sound pretty crazy to myself! If I didn’t live with this, I wouldn’t believe it either.
Fibro-fog is a thing as well. When I am feeling unwell, I get confused and can’t think straight. I don’t have enough spoons or spell slots for basic daily living skills. My cognition gets destroyed by migraines as well. Most questions are met with a “…what?” response making me seem either remarkably unintelligent or uncaring about others.
I have tried almost every prescription and procedure short of jaw reconstruction that I have been offered by the series of doctors, specialists, and experts, all to no avail. Cymbalta helps with pain but caused me to be so fatigued I couldn’t get out of bed. I had acupuncture, which was painful and did nothing to help migraines. I had Botox injections in my shoulders and neck, which, while painful, really didn’t seem to affect migraines. I tried Topomax, which lowered my blood pressure to the point that I passed out in the shower(!). I tried Pamelor and it gave me insomnia so badly that I was getting a migraine every day due to sleep deprivation. I even tried taking Guaifenesin daily and removing all salicylic acid from my diet for a couple months as per the Dr. St. Paul Armand protocol, but that increased my migraines as well. It’s not like I haven’t tried to get better.
I’m currently doing very small amounts of yoga and using the elliptical morning and night because exercise is one of the keys to fighting fibromyalgia. But exercising too much brings on migraines and fibro flare-ups. Lol. Have to find just the right amount. I am the perpetual Goldilocks, but no porridge is “just right”.
I am growing increasingly frightened of my biology. I am having less and less days not requiring Imitrex to knock out the migraine, and I am more often requiring double the dose of Imitrex that I used to need to stop a migraine.
What happens if I don’t take an Imitrex? Eventually the pain and light and sound sensitivity builds to the point that I start vomiting from the pain… which makes the migraine worse, leading to nonstop puking and a visit to urgent care. I try to avoid those. 😉
What else triggers migraines, you ask? Any more alcohol than ½ a drink, too much sugar, not eating regularly, stress, exercise, dehydration, heat, sun, air conditioning, wind, jaw tension, sleeping wrong (on my stomach, side, or not perfectly aligned flat on my back), and more!
“Living” with fibromyalgia is difficult because I don’t “look” sick, much in the same way that I don’t “look” autistic. People doubt what they cannot see.
My kids are disappointed with me when I’m lying on the floor holding a pillow over my eyes and won’t come play with them. My husband gets frustrated that, very often, the childcare falls on him because I can’t process or parent.
My ability to work suffers, or I suffer to work. I take more Imitrex to be able to function at work and fall apart and become nonfunctional when I get home. This is not sustainable. I feel like a train slowly rattling off the track and not being able to stop it.
If I’ve ever come off as bitchy or uninterested, I apologize. I am in pain so often and I mask it so much that sometimes I forget to tell people and then I come off wrong.
I’ma keep fighting, at least fighting seems to be in my genes along with the rest of this crud. I refuse to give up hope. One of the next specialists I see will help me, someday!
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.