Living with POTS and EDS

01/26/22 • 71 min

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Zoe's life changed dramatically at the beginning of 2021. In rapid succession she contracted Covid-19, suffered a concussion, and came down with mono. These three major stressors on her body caused a massive flare of chronic pain, functional difficulty and POTS symptoms (postural orthostatic tachycardia syndrome). At first her doctors thought Zoe was experiencing long covid, but upon digging deeper they realized she had experienced some of these symptoms before the covid pandemic began. She went through dysautonomia testing which revealed an official POTS diagnosis, and was then diagnosed with EDS (Ehlers-Danlos Syndrome) by a rheumatologist. In episode 43 of the Major Pain podcast, Zoe discusses her difficult health journey so far. She has been working towards a music education degree but her health has made that path more and more difficult. Now that she has a diagnosis, she is looking to integrate her life goals with her health realities, potentially changing course towards social work. She discusses the importance of learning patience during her diagnostic journey, since doctors visits tend to be excruciatingly far apart. She also shares how creating TikToks has provided her a platform for chronic illness advocacy and a vital creative outlet that has brought her a valuable sense of community.

Previous Episode

Living with Complex Regional Pain Syndrome (CRPS)

At just 16 years old, Jonelle was hit by a drunk driver and suffered a broken neck. The only reason she survived is that a friend was driving behind her and rushed to her aid, holding her head in proper alignment to open the airway that had been cut off. After being life flighted to the hospital, Jonelle's doctors were astonished that she not only survived her injuries, but did not suffer permanent paralysis. An even greater shock would come in her 20s, when Jonelle's neck was broken a second time in another car accident. This would lead to several surgeries, leaving Jonelle with a poorly understood condition called complex regional pain syndrome (CRPS). In episode 42 of the Major Pain podcast, Jonelle shares her incredible story of survival and subsequent pain journey. CRPS is not widely known among doctors, often leading to misdiagnosis and improper care. It is characterized by intense pain localized around the site of injury or surgery, disproportionate to the injury in both severity and it's long-lasting nature. Patients face extreme difficulty in not only managing symptoms, but advocating for care in a system that often disbelieves their situation due to a lack of CRPS awareness. Jonelle shares stories of shocking negligence from multiple doctors, as well as deeply personal reflections on her difficult path. Jonelle has turned to activism through her work with the National Pain Council, helping other chronic pain sufferers get the care they deserve. She has learned a great deal about self-advocacy, and finding joy on the other side of trauma. This week Jesse participated in a panel discussion on Invisible Disabilities with the ConnecTra Society. You can watch the archived live stream here: https://www.youtube.com/watch?v=mxM4GqjpHUM

Next Episode

Living with Friedreich’s Ataxia

When Sydni was 7 or 8 years old she started exhibiting symptoms of instability and difficulty walking. At 10 she was diagnosed with Friedreich's ataxia (FA), a rare inherited neurodegenerative disease. Both of her parents were unknowing carriers of the disease, giving birth to two children with FA. Over time FA causes progressive loss of feeling and mobility. Although research into this disease is ongoing, there is currently no cure. In episode 44 of the Major Pain podcast Sydni discusses living with Friedreich's ataxia. Now 21 years old, Sydni is the CEO of her own social media company and was recently engaged to her boyfriend. Although her disease has progressed over time it has not stopped her from living her life and pursuing her dreams. Growing up with health problems caused her to become more empathetic towards others in need, giving her a deeper appreciation for the positive things in her life. She shares her hope for the future of FA research, having participated in several clinical trials. Although the therapies she trialed did not prove effective, she has hope that breakthroughs will be made to improve the lives of FA patients in the future.