Small Fiber Neuropathy brings two women together in friendship and for a cause
Rosy George and Jen Roland were strangers living hundreds of miles apart. Soon after her life-changing diagnosis, Rosy of New York reached out to the Foundation for Peripheral Neuropathy looking for support. She was given Jen’s contact information, a young mom from Maryland who was also struggling with small fiber neuropathy. Their first phone call was the beginning of a blossoming friendship over motherhood, chronic pain, and desire to serve others facing the disease.
Despite the common misunderstanding, peripheral neuropathy—a disease that affects the nerves outside the brain and spinal cord—doesn’t just affect the elderly and diabetic. Rosy was only forty-five and a mom of two young kids when she began to experience burning, tingling, tinnitus, vertigo, vision symptoms, ocular migraines, and numbness all over her body. Her symptoms started mysteriously during COVID, when she started exhibiting certain symptoms that many people suffering from Long COVID report experiencing.
She was initially dismissed by her rheumatologist, who thought it was anxiety, and referred her to a neurologist for further investigation. The diagnosis was a rigorous and exhausting process. After a series of MRIs, EMGs and extensive blood work that were all normal, she underwent a skin punch biopsy where skin samples were taken from her leg. Her low nerve fiber density led to a diagnosis of a chronic condition called small fiber neuropathy. She was told there is no cure or effective treatment to improve her condition. It was overwhelming to digest this news. Everything she used to do at ease, including running errands, household chores, and caring for her kids, became difficult, even wearing clothes, socks, and shoes.
Jen’s journey with small fiber neuropathy began at the age of thirty-nine when she noticed intermittent burning in her feet. Over a period of three months, the burning became constant and traveled up her legs, making standing even for ten minutes excruciating. She was put on bedrest and had to rely on her spouse and friends to transport her kids, grocery shop, and perform household tasks. For nearly two years, doctors believed Jen’s pain was caused by a previous back injury. She was prescribed various treatments to alleviate the pain, including physical therapy and steroid injections, neither of which was effective.
Eventually, Jen saw a spinal surgeon, who explained that back pain would not travel up her legs and referred her to a neurologist. Jen’s exhaustive blood work and lab tests, including EMGs, all came back normal, but a skin biopsy revealed decreased nerve fiber density. This finding, combined with her symptoms—which now included numbness and tingling in her hands, sweating abnormalities, and fatigue—all fit with small fiber neuropathy. In the time it took to receive a diagnosis, Jen had visited more than twenty specialists and tried multiple medications, eventually finding a combination to dull the burning enough to sleep, resume driving, and perform activities of daily living.
Managing Small Fiber Neuropathy
Prior to their diagnoses, Rosy and Jen were healthy, active moms who frequented the gym and enjoyed activities such as running, lifting, and playing sports with their kids. The pain caused by small fiber neuropathy turned their lives upside down, placing severe limitations on what they were physically able to do. They now both rely on low-impact exercise to manage their pain, along with medications. These medications don’t stop the progression of the disease and have unpleasant side effects, but they take the edge off the pain. Both Rosy and Jen attribute their strong faith to maintaining a positive attitude toward suffering and growing in the midst of adversity.
Since their diagnoses, Rosy and Jen have spent countless hours and thousands of dollars seeking answers. They have come up empty-handed, but there are a few things they have gained: increased compassion for others in pain, connection with others going through similar experiences, and hope. They have a newfound determination to be a voice for the hurting, heighten awareness about this disease, and spur the scientific community to conduct research that will eventually lead to a cure.
What Rosy and Jen wish people knew about Small Fiber Neuropathy
In their experience, Rosy and Jen found that their doctors know little about small fiber neuropathy. The two women found it difficult to manage, and mentally draining to endure the chronic physical pain. For them, this disease is unforgiving.
Today, both Rosy and Jen have been referred to pain management but for the most part navigate this disease on their own. They are passionate about increasing education and awareness of this disease, which does far more than affect the feet and cannot be “fixed” by medication or orthotics.
It is this passion to find cures, and help others, that keep Rosy and Jen going every day.
Rosy and Jen’s Call to Action
With approximately 10% of the U.S. population affected by peripheral neuropathy, chances are you or someone you know will struggle with this debilitating disease. If we told you a simple action you take today could provide hope to those suffering with neuropathy and greatly improve their quality of their life, would you take it?
There are many ways you can help. We need people who are willing to help us power research and funding for a cure. We also need increased pharmaceutical attention and more effective strategies for disease modifying treatments. With your support we can build a powerful network of multidisciplinary experts who are willing to harness their talents for better understanding and treatment of small fiber neuropathy. To join Jen and Rosy in their efforts, please consider donating to the Foundation for Peripheral Neuropathy. Every contribution helps advance research toward finding a cure.
Last Word from Rosy and Jen: What keeps you going?
Rosy and Jen are both dedicated to the fight to find better treatments and better cures.
Jen believes there is a reason and a purpose for her pain. Rather than focus on the negative, she chooses to focus on living the best life she can and invest her time in serving others. “Living with chronic pain has helped me realize what’s most important in life, grow in humility and compassion, and become better equipped to minister to the hurting,” said Jen.
Rosy is focused on fighting the disease with her strong faith, diet, lifestyle and exercise. She wakes up every day and fights the good fight to raise her kids and be an asset for her family and friends. She also mentors and helps people who live with this disease to focus on the positive aspects on life. “You can always find hope even in the darkest circumstances if you try. I do believe in miracles and hope for healing,” said Rosy.
Thank you, Jen and Rosy, you inspire us!
To read more about Jen, go to her website at www.jenroland.com.
To read more about Small Fiber Neuropathy, read here.