By AC Spies
Amanda Voropaeff has a set morning routine: Wake up, stretch, 30 minutes of cardio, watch a YouTube video and take a shower. She then journals for 30 minutes and has breakfast, which is usually a smoothie. Her routine doesn’t stand out, but other aspects of her life do.
That’s because she’s fighting something deep inside her that many people don’t know of—fibromyalgia.
“The way I describe it to people is I have a condition that inhibits my ability to walk sometimes,” Voropaeff said. “It is certainly painful. And this condition feels like my muscles are being torn off my bones. And sometimes the pain is so severe that it causes me to not think well or cause me not to walk well.”
According to Mayo Clinic, fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Fibromyalgia affects roughly 10 million people in the US, most of whom are women, according to National Fibromyalgia Association.
Voropaeff is trying to raise awareness of what it’s like to live with the long-term condition.
May is Fibromyalgia Awareness month and May 12 is Fibromyalgia Awareness Day.
There is no cure for fibromyalgia, but as modern medicine keeps improving with medicines to help relieve the pain, there are some ways to make the pain more manageable.
Stefanie Spies is another sufferer of fibro. Spies describes the disease as “a muscle that just feels like you have constant charley horses in different parts of your body at different times. And then you have the nerves send off different signals to different body parts telling stuff to hurt when it shouldn’t hurt or make your feet feel broken when you go to stand up.”
Spies can tell when there is a change in the atmosphere because of her disease.
“There’s a storm coming or something, because [stuff] starts to hurt, and I get real dizzy and want to throw up and almost pass out,” she said. “And then I read the weather news, and [it] says pouring down rain, thunderstorms, winds 25 to 35, staying with gusts up to and over 40 miles an hour…pretty much means my day is crap.”
Voropaeff and Spies both didn’t receive their diagnoses immediately. Spies was diagnosed in September 2011—though she initially felt pain in March of 2011—and Voropaeff was diagnosed at 26, even though her symptoms started showing at 24. In both instances, doctors had initially no idea what was going on in their bodies.
“Only one thing hurt at first, my one shoulder, then it switched to the other shoulder and then it was in both shoulders,” Spies said. “So, it just took a while for everything to come together.”
Spies said the symptom that is the worst for her is trigeminal neuralgia, which is a condition closely related to fibromyalgia because of nerve pain.
“[It’s] the nerve that runs down the side of your face from your ear, down the side of your jaw. It will start to hurt and hurt in a way that you cannot describe.”
Voropaeff has a different symptom that troubles her. “Symptoms-wise it’s my leg and the muscles, pain wise. But honestly, the biggest symptom is the fear of it actually happening again, losing my ability to walk or being down for several days.”
Spies said it can be difficult when doctors don’t trust her when she discusses pain she’s feeling.
“I used to have a really great doctor,” Spies says. “And then he left the practice. And I met his replacement this past August, and for the first time in my life I came home and cried because he’s the kind of doc where if it doesn’t show up in bloodwork or on an x-ray, it’s not real. And that just crushed me.” Spies says multiple doctors have been that way, telling her it’s “all in her head.”
The most common medications that were prescribed for them were Lyrica and Gabapentin, and even then, they didn’t do much help.
“They tell you take all these meds that screw with your brain…and they don’t help at all,” Spies says.
Voropaeff says Gabapentin made her forget how to drive home from school.
“One day, I literally sat in the school parking lot at Arizona State University and contemplated, like, how am I going to get home, and it was the scariest thing on the planet. I walked into the doctor’s and told them to pull me off of Gabapentin and they said no, so I went through the withdrawals on my parents’ couch.”
Even though the disease prevents them from doing activities like walking for a long time, they find their own ways to manage and cope with the pain.
“One of the things I cope with is I kind of just giggle at little things that happen,” Voropaeff says. “I find humor in anything right? So like, if my legs freak out, I kind of giggle about it.”
Spies has similar coping mechanisms. “I use some warped and twisted humor. I can usually make everybody around me laugh because of the stuff that comes out of my mouth.”
Voropaeff wants people to put themselves in her position. “One thing I wish is that people would be understanding.”