Podcast Summary: The Medical Detectives

Episode: Michelle's Story: The Patient Becomes the Medical Detective
Air Date: October 1, 2025
Hosts: Dr. Erin Nance & Anna O’Brien
Guest: Michelle

Episode Overview

In this gripping episode, Anna and Dr. Erin meet Michelle, a former healthy, active woman whose life was derailed by a mysterious and excruciating pain in her foot following a bout of Covid-19. When the medical system failed to find answers, Michelle took matters into her own hands, ultimately diagnosing herself with a rare condition: erythromelalgia. Her tale captures the frustrations, ingenuity, and relentless advocacy required from patients with complex and poorly understood medical conditions. The hosts and Michelle discuss the uncertainty surrounding post-Covid illnesses, the realities of “becoming your own medical detective,” and how patients and doctors must work together in the face of rare diseases.

Key Discussion Points & Insights

1. Michelle’s Background and Initial Health Crisis

• Upbringing and Health History (02:18–02:42):
  • Michelle grew up on a rural farm in the Catskill Mountains and adopted a very healthy vegan lifestyle in college. She had no major health problems prior to 2022.
  • “I was very healthy…exercised regularly.”—Michelle (02:18)
• First Signs of Trouble: Post-Covid Long Haul (02:48–04:16):
  • Contracted Covid-19 in May 2022, despite being vaccinated.
  • Developed long Covid with overwhelming fatigue, muscle spasms, and anxiety that persisted for months.
  • “The fatigue didn’t stop for months. I was falling asleep at my desk during work calls…It was very disruptive.”—Michelle (03:13)

2. Onset and Progression of Mysterious Symptoms

• A New Pain Emerges (04:16–08:08):

  • After initial long Covid symptoms faded, Michelle woke to a burning pain in her right foot, like a “bad sunburn that just wouldn’t let up.” (05:46)
  • Treatments for plantar fasciitis failed zero effect, leaving her in agony and disrupting her sleep and relationship.
  • “I’d wake up and have to ice that foot just to be able to go back to sleep.”—Michelle (07:00)

• Hit-a-Wall with Provider Assistance (08:58–10:32):

  • Podiatrist ruled out plantar fasciitis and found nothing on ultrasound, speculated “nerve pain” but offered no solutions.
  • Michelle: “I can literally just picture him still just kind of shrugging and saying, yep, I guess it’s nerve pain. And I didn’t even know what to say.”—(10:45)

• Specialist Circuit: Ortho, Pain Management, and Dead Ends (11:22–16:55):

  • Saw orthopedic foot specialist, underwent anti-inflammatories (resulting in a stomach ulcer), steroid injections, nerve blocks, MRI—all inconclusive.
  • Sensed doctors doubted her symptoms’ reality despite their silence.
  • “None of them actually said it, but you felt it.”—Michelle and Erin on being dismissed (15:34–15:40)

3. Taking Control: Becoming Her Own Detective

• Personal Advocacy and DIY Diagnostics (17:30–22:48):

  • In frustration, Michelle conducted exhaustive self-research, pushing for a nerve conduction study (normal results) and parsing through case studies and journals.
  • She methodically tested her foot’s response to heat and cold, discovering classic signs of erythromelalgia.
  • “So I decide I’m going to put sneakers on and walk around outside for a while on a hot day…that resulted in searing pain…and my feet were bright red.” —Michelle (23:03)
  • In cold environments (like the grocery store), she was symptom-free. (24:04)

• Emotional Toll and Sinking Realization (25:23):

  • “It was just kind of surreal and horrifying to know that’s what it was…If it is officially what it is, there’s no treatment, and there’s no cure for it.”—Michelle (25:23)

4. Diagnosis, Treatment Attempts, and Life With Erythromelalgia

• Validation and Finally, a Name (28:49–30:54):

  • Brought her self-discovered diagnosis to her neurologist and then to a pain specialist’s PA who recognized the condition instantly and confirmed it.
  • “Within two, three minutes of this appointment, she looked at my feet and she had diagnosed me officially. And that was the ultimate validation, obviously, that I was right.”—Michelle (30:43)

• Autonomic Dysfunction & Double Trouble (27:08–28:35):

  • Already had Raynaud’s syndrome (the “opposite” problem, cold-induced), now also erythromelalgia (heat-induced). Both are autonomic nerve disorders.
  • “It just seems like it’s just a case of faulty wiring.”—Anna (28:33)

• No Clear Treatment, Experimental Management (31:30–39:21):

  • Tried low-dose naltrexone and Lyrica (off-label for pain)—no effect.
  • Explored supplements (alpha lipoic acid), antidepressants, and even a spinal cord stimulator; nothing helped and symptoms spread to hands and face.
  • “My case of this disease…seems to be a lot worse than the average person’s experience.”—Michelle (37:38)
  • Support groups offered both camaraderie and existential fear: “There is this very real fear of how much worse is it going to get.”—Michelle (39:21)

• Living With Uncertainty, Glimmer of Hope (41:26–42:50):

  • No ongoing US research, but a Swedish company is developing a topical gel for approval via the FDA for this rare condition.

5. Lessons, Quotes, and Empowering Moments

• Self-Advocacy and the Scientific Patient (24:03–25:23, 44:09–45:18):

  • The entire arc is a testament to scientific self-advocacy.
  • “If no one’s going to do the science for you, then you’re gonna do the science yourself. So we love a baddie with a brain.”—Erin (23:55)
  • “There’s the difference between diagnosing your own death on WebMD and actually like doing these experiments yourself.”—Michelle (45:08)

• On Navigation and Partnership With Doctors (48:52–49:24):

  • “What separates a good doctor from a bad doctor, most of the time, is their willingness to be curious about the things they don’t know.”—Erin (48:52)
  • Peer groups sometimes hold more current knowledge than individual doctors about rare diseases but require scientific caution.

• Powerful Takeaway for Listeners (46:35–48:06):

  • Both hosts urge patients to document symptoms and respectfully push for investigation; being an “empowered detective” is vital in rare or misunderstood conditions.
  • “If you clock it, something is up.”—Anna (48:06)

Notable Quotes & Memorable Moments

• “It’s terrifying, living in this body that is working against you.”—Michelle (39:21)
• “If anything in the back of your mind is saying this doesn’t really sound right…you have every right to be in control of it.”—Michelle (45:50)
• “This is your body. You can test and learn from it.”—Erin (46:21)
• “We love a baddie with a brain.”—Erin (23:55)

Timestamps for Important Segments

• 00:33–01:16 — Introduction to post-Covid illnesses as a recurring theme
• 02:18–02:42 — Michelle’s healthy baseline and lifestyle
• 04:16–07:54 — Onset, oddity, and progression of foot pain
• 11:22–14:12 — Diagnostic dead ends & the rationale for nerve pain
• 17:30–22:48 — DIY scientific experiments & research
• 25:23–26:19 — Emotional impact of self-diagnosis
• 28:49–30:54 — Confirmation by specialist and relief/defeat hybrid
• 31:30–41:21 — Treatment attempts, management frustrations, and spreading symptoms
• 41:26–42:50 — Hope for future research and new treatments
• 46:35–48:06 — Proactive patient strategies & final lessons

Tone and Takeaway

This episode blends empathy, scientific thinking, and vivid first-person storytelling to illuminate the detective work that some patients must undertake. The hosts’ expert commentary contextualizes Michelle’s experience, and both validate the courage and intelligence required to advocate for oneself in the opaque corridors of medicine. It’s an empowering listen—and a call to curiosity and collaboration at all levels of healthcare.