Note: This article was posted last November on my page at The Mighty, a great resource and community for people with chronic or mental illnesses.
I have long, straight, super-fine hair. When I was a kid, it would often get tangled and I didn’t like to brush it. So my mom would brush it for me, yanking the brush through the rat’s nest knot. “Ow, quit yanking,” I would say with tears streaming down my face.
“That didn’t hurt.”
If I had a dollar for every time I’ve heard that phrase, I could buy a small mansion. OK, maybe that’s a bit of an exaggeration, but I did hear it a lot. Sometimes I still do, or variations of it.
A Lack of Understanding
Several years ago, my sister and I visited an aunt and cousins in Texas. We got to meet one cousin’s grandkids who lived with him.
The impish face of one granddaughter was adorable. I so wanted to play this game she’d made up.
“Hold these,” she chirped, and handed me three pine cones. I don’t even know where she got pine cones in Houston, Texas. I hadn’t seen many pine trees.
Try as I might to hold them lightly, I could barely stand having them poke my tender palms. “I can’t hold these,” I finally said, as I set them down on the coffee table. “They hurt my hands.” That was an understatement.
My sister looked at me with puzzlement written on her face. “Does that really hurt?”
At least she’d asked.
More Failure to Understand
On another trip, this time with my husband and son, Mexico was the destination. Cancun, to be specific. A place of sunshine and beautiful coral sand beaches.
Mid-trip, my husband decided he wanted to have his hair cornrow braided by a merchant in the local outdoor market. He talked me into having mine braided too. I should have known better.
While he was enjoying what felt like a wonderful scalp massage, I endured torture worse than all my mom’s hair brushings rolled into one. I felt certain the woman braiding my hair was going to pull every hair out of my scalp. I will not be doing that again. Ever.
I took the braids out the very next day because the pain wouldn’t cease until I did. My husband still didn’t understand.
Looking for Answers
The denial of my physical pain by those who know me best often makes me wonder if I’m losing my mind. Because it does hurt. At least that’s what my brain tells me.
It wasn’t until I was in my 30s that a doctor gave my sensitivity to pain a name: fibromyalgia. No one could tell me why I had this thing that can’t be tested for or proven. Sure, there were theories.
One pain specialist asked if I’d ever been sexually assaulted, because that kind of trauma is connected to fibromyalgia. I was, when I was 14, but I’d been ultra-sensitive to pain long before that. An online article suggested a link between the Epstein-Barr virus, also known as mononucleosis, and fibromyalgia. I had mono when I was in the seventh grade. But again, my pain sensitivity existed before that five-week illness.
The first doctor to mention fibromyalgia to me wouldn’t commit to a diagnosis. She prescribed amitriptyline saying that “empirically that’s what we’re treating you for.”
In addition to the chronic muscle pain, I have osteoarthritis, although I’ve been told the degeneration in my neck doesn’t look bad enough on an MRI to cause the pain I complain about. In other words, it’s really all in my head.
Happening upon Relief
As with most fibro patients, I have some other health issues, including GI problems. At one point, my doctor suggested I quit eating gluten. When I replied that I hadn’t eaten gluten in over a year, she suggested I quit eating dairy. I rolled my eyes, feeling like she had no real solutions. But I did try it.
She also wanted me to quit taking ibuprofen, which I wasn’t happy about because it was the only thing that took the edge of my chronic pain.
For four weeks, I read every label. If a food contained whey, casein, or any dairy products, I didn’t eat it. Then one day I realized my muscles didn’t ache all over. I didn’t even wish I could take ibuprofen because I didn’t need it.
So I kept it up. I didn’t eat dairy at all for four months. Then came my birthday and dinner out at The Cheesecake Factory. I decided I’d been good, so I deserved a piece of cheesecake to celebrate. I ate the whole thing, which, if you’ve ever been to The Cheesecake Factory, you know is a huge slab of pure dairy and sugar goodness.
The next morning, I awoke to a feeling like I’d been hit with a Mack truck. Every muscle ached.
I’ve been mostly dairy-free for several years now and feel much better.
Still Pain Sensitive
Which is not to say I don’t still deal with pain. I still don’t understand why pain scales have a 0 on them. Are there people who, at times, don’t feel any pain? I suppose there are, but I wouldn’t know about that. Every day something aches or I do something that results in acute pain beyond what those without fibromyalgia would feel.
But the pain is more manageable without the added inflammatory reaction from bombarding my body with dairy products it doesn’t like.
It’s also easier to deal with when I quit listening to those who don’t understand tell me, “That didn’t hurt.”