From ‘Reptile’ to ‘Guinea Pig’: Diving Into Pain Research
By Tara Bracco
On a 95-degree day in Centreville, Virginia, Sammie Carpenter isn’t only thinking about cranking up the AC to stay cool. Her preparations go further: ice packs, plenty of water to drink, electrolyte or salt packets, and fans. Due to one of her medical conditions, she can easily get too hot, dizzy, and lightheaded—sometimes even passing out.
“My body, very much like a reptile, can’t regulate the temperature,” Sammie explains.
RECURRING COVID LEADS TO DIAGNOSES
For the last five years, Sammie, now 30, has been living with compounded chronic pain from fibromyalgia, postural orthostatic tachycardia syndrome (POTS), and Ehlers-Danlos syndrome (EDS). Two bouts of COVID, in 2020 and 2022, resulted in long COVID. The infections exacerbated health conditions that she’s had, undiagnosed, most of her life—making previously mild or sporadic pain and symptoms much more debilitating. “I’ve never had a break since,” she says.
Fibromyalgia, diagnosed in 2023, caused pain so intense she couldn’t get out of bed. But once she started receiving treatment to help manage the condition, other symptoms remained, and it became clear she was living with more than one medical issue. Still, it would be another year and a half before she received more answers.
“Fibromyalgia is your check-engine light for your body,” Sammie explains. “It is usually something with a comorbidity—sometimes an autoimmune disorder or dysautonomia.”
Like many people living with chronic pain, Sammie went from specialist to specialist until she was properly diagnosed. During that time, she was wrongly told she had multiple sclerosis, and one doctor told her the pain was caused by anxiety. It wasn’t until she passed out at work, after simply standing up, that doctors identified what was going on.
POTS, a form of dysautonomia affecting the blood vessels and heart, was causing her lightheadedness. And EDS, which affects connective tissue, led to painful joint dislocations and subluxations (partial dislocations), sometimes immobilizing her.
“I live in a level of pain that would send most people to the hospital,” she says. “Living with chronic pain has impacted every aspect of my life, every single day.”
PREPARING FOR PAIN
Sammie’s life looks different now. Her kitchen was adapted so she can sit down while chopping ingredients for her meals. Showers have to be quick—with water that isn’t too hot and a chair to sit on—and she drinks full glasses of water before and after. She regularly uses a walker, rollator, or wheelchair to get around when she’s away from home, sometimes utilizing them in her one-bedroom apartment as well on bad pain days.
To take some of the edge off her daily pain, which Sammie describes as “always really high,” she uses a combination of treatments—heat, ice, physical and occupational therapy, braces and orthotics, a TENS unit, and prescription medications.
Despite it all, she considers herself lucky to be able to live alone and work. Her significant other, who lives nearby, is supportive. And her desk job, working for a nonprofit school that advocates for students with disabilities, gives her the opportunity to work from her wheelchair.
TRACKING SYMPTOMS TO BOLSTER RESEARCH
When Sammie was diagnosed, she turned to medical journals, trying to make sense of what was happening to her body. Then she began looking into clinical trials in the hopes of relief.
“There is such limited knowledge and limited research out there. I was in so much pain, and nothing was working,” Sammie says. “I was like, ‘Well, let me be a human guinea pig, because I can’t be a functional human.’”
But there were no fibromyalgia trials nearby, and she didn’t qualify for a trial investigating a POTS medication because of the way her condition manifested. Then she found an opportunity that did fit: research studies offered through a health app. Since 2023, she’s participated in four studies about health outcomes of long COVID.
The research is conducted through a digital smartphone application that helps with managing chronic illnesses. The app works with a wearable device that tracks her symptoms, including heart rate and exertion levels, helping her pace herself through daily tasks and planned activities.
Sammie was using the app prior to getting involved in the studies, so it was easy for her to opt in to share the symptoms she records daily with researchers. Virtual studies, she points out, remove barriers for people with pain who may not be able to physically show up to a clinic or hospital when they’re not feeling well.
The studies Sammie is contributing to explore how various factors—re-infections, physical functions such as heart rate fluctuations, the menstrual cycle, and atmospheric conditions—correspond with or impact the chronic symptoms of long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and related conditions.
Even without the published findings of the first completed study, Sammie’s participation told her something about her own body: There’s a hormonal connection to her fatigue and pain. Tracking her symptoms revealed that her pain was severe three days before menstruation began and only began to taper off when her period ended. This observation led her to get an intrauterine device, a form of birth control, which stopped her period. “That has made a huge change in stability and not having so many ups and downs,” she shares.
FINDING PURPOSE
Sammie feels strongly that her medical conditions need to be further researched and better understood. She participates in studies because she knows they benefit from a larger sample size. It also gives her a sense of hope.
“I desperately want faster diagnosis, better treatments, better medical understanding for professionals and for the people, like me, who live with chronic pain every day,” she says.
She has become a vocal advocate. After undergoing advocacy training through the U.S. Pain Foundation, she gave a presentation to medical students at Johns Hopkins University. She wants future doctors to know they need to listen to what people with pain know about their own bodies.
“I tell doctors all the time, ‘I won’t confuse my Google search for your degree, but you can’t confuse your 11 hours of pain education for my 20 years of life with it,’” she says.
She also hopes doctors develop a better understanding of the differences between the acute and chronic pain experience. “I’ve had doctors write me off because I have a full face of makeup on, saying if I was really in that much pain, I wouldn’t have the time, energy, or ability to do that,” she shares. “But when it’s that level of pain every single day and I have to push through it for every little thing I do, sometimes putting on a face of makeup is all that gets me through the day at all.”
Sammie spends hours each week writing letters, going to town halls, and reaching out to her legislators. She points out that a disability can happen to anyone, and expresses concern that protections under the Americans with Disabilities Act (ADA) are at risk of being rolled back.
“[Disability rights and protections] are under attack, and we need to fight for them, because they are not good enough. They’re the bare minimum,” she says. Even with current ADA guidelines, when Sammie is having a bad pain day, she still can’t physically use a public bathroom or get into most buildings by herself.
Since her COVID infections, Sammie has had to mourn the life she used to have and confront a new reality. As she navigates a daily existence requiring extensive preparations to minimize pain, she’s finding purpose in telling her story and contributing to research efforts that may help herself and others.
“Something horrible happened to me. Participating in studies, participating in advocacy, that’s a way for me to keep my head above water,” Sammie says. “My body is breaking under me. I need some reason to find something positive to come out of this, or I would crumble.”