A rare condition behind this man's burning pain

For Gregory Maassen, then 51, the pain initially began as a burning sensation near the top of his left arm before quickly spreading to his upper back and chest. Within a month, his whole body, from his ears to his feet, was burning.

Due to the pain, Maassen spent most of his days in bed and had difficulty sleeping. Although he visited several doctors who administered different tests, including blood draws and an endoscopy, none of them could find a cause for his unexplained pain.

Over the next few months, Maassen's condition continued to worsen, to the point where he feared he was going to die. It wasn't until over a year later that he met Ahmet Hoke, a neurologist at Johns Hopkins Medicine, who finally pinpointed the rare condition behind his pain.

After considering the suddenness and severity of Maassen's symptoms, Hoke diagnosed him with small-fiber sensory neuropathy, a rare type of peripheral neuropathy that damages small nerve fibers. Because nerve conduction tests examine large nerve fibers, this condition can sometimes go undiagnosed. According to Hoke, only 0.1% of neuropathy cases are like Maassen's.

Later, a skin biopsy confirmed Maasen's diagnosis. Although many factors can contribute to neuropathy, including diabetes, chemotherapy, and autoimmune disorders, Maasen said he believes tick bites were the cause of his condition.

An unexpected treatment: Exercise

After receiving his diagnosis, Maassen was prescribed medication to help him manage his pain, including a gabapentinoid and an antidepressant. However, Maassen was more skeptical about Hoke's other treatment recommendation: exercise.

"Are you out of your mind?" Maasseen recalled thinking. Chronic pain made him so tired and sore that just getting through his daily life was difficult; he could barely imagine exercising.

However, Hoke noted that exercise can help regenerate nerve fibers and improve chronic pain for some patients with neuropathy. With no other hope, Maassen began trying out different exercises.

Using his passion to raise awareness

By 2021, Maassen had cycled thousands of miles and stopped taking his pain medication. Since cycling with his e-bike had become a passion, he came up with a more ambitious idea: He would e-bike from Washington, D.C. to San Francisco over a four-month period to help raise money for neuropathy research.

Hoke, who usually recommends neuropathy patients walk, lift light weights, or do Pilates, said he thought Maassen was "nuts" when he heard about his idea for a cross-country e-bike trip.

During his trip, Maassen rode his e-bike with an almost 80-pound trailer attached to the back, which included a tent, clothes, an orange safety vest, a camera, and other supplies. He rode through heavy winds, pouring rain, and snow. Every day, he had to find an outlet to charge his bike.

By the end of his trip, Maasen had cycled around 4,685 miles, or roughly 65 miles a day. He also raised over $179,000 from people he met along the way, including neurologists, other neuropathy patients, family members, and friends.

This March, Maassen started another cross-country bike ride to raise funds for neuropathy research. He began his trip in West Palm Beach, Florida, and finished in Los Angeles, traveling roughly 7,250 miles. This time, he raised over $36,000 for Johns Hopkins Medicine's neuropathy center.

"I haven't had a day in 2022 [during the first fundraising trip], and also this year, that I say, 'Well do I really need to do this?" Maassen said.

With the money Maassen raised, Hoke said he is working to develop a medicine that will hopefully regenerate nerves as effectively as exercise for patients with neuropathy.

According to Maassen, who is now 59, this will be his last cross-country bike trip since he promised his wife Janet that he would spend more time with her and their cat, Queenie. However, he still plans to find other ways to support neuropathy research.

And, "that doesn't mean that I will stop cycling," Maassen said.