Michelle's Story: The Patient Becomes the Medical Detective

Summary

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

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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.

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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)

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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)

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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)

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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.

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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)

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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)

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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

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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.

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Transcript

[Anna]

Hello, Anna.

[Erin]

Hello, Erin. How are you doing today?

[Michelle]

I'm.

[Anna]

I'm great. You know, this is probably, I think, the first time we have a guest where I had never heard of the disease before.

[Erin]

I know that was pretty mind boggling to me because to me, you are all knowing. You are like the medical deity that comes here and just like, sits down and be like, ah, I know this. So we were kind of on the same page today, which was fun for a change.

[Anna]

Yeah. I mean, it's interesting in that what we find out is that this disease is kind of like one side of a coin that I. I do know that other side of the coin very well. But this particular manifestation was something that I had never heard of. And it relates to, I think, probably, probably the most common theme on our show, which is post Covid related illnesses.

[Erin]

Yes. And I think what's really interesting about this episode specifically is that it brings to light that we just don't understand Covid that well. And I think there's a lot more to be discovered. And with that, let's just jump right in.

[Michelle]

Let's do it.

[Anna]

Hi, Michelle. Welcome to the Medical Detectives. Thank you so much for joining us.

[Michelle]

Hi. Thank you for having me.

[Anna]

Well, Michelle, we usually like to start learning a little bit about what life was like for you growing up. Tell us what life was like for little Michelle.

[Michelle]

Yeah, so I actually, I grew up on a farm in upstate New York in a really rural area in the Catskill Mountains. And my world was pretty small there, and so I didn't get to experience a lot of things until I left for college.

[Anna]

For anyone who doesn't know about the Catskills, that's like where they film Dirty Dancing. So, yeah, that's the vibe we're going for. Oh, my goodness.

[Michelle]

It is, yes.

[Erin]

Oh, beautiful. Beautiful.

[Michelle]

Yes. Very, very pretty area.

[Anna]

All right, so you leave. You leave Patrick Swayze's lodge and you go off to college. Would you consider yourself pretty healthy at this point in life?

[Michelle]

Yeah, absolutely. And actually, on that college campus, one of the people handing out leaflets, they had a vegan pamphlet. And I went vegan at that point. And that since then I've had a really healthy diet, really healthy way of living. I've always exercised regularly. So, yeah, at that point, I was. I was very healthy.

[Michelle (alternate voice or inner thoughts)]

No issues.

[Anna]

And so fill us in when things started to go awry.

[Michelle]

Yeah. So this was a little over two and a half years ago that things really went south. In 2022, May 2022, I got Covid and that's what Started the cascade of everything. I ended up with long Covid. I was vaccinated, but I didn't realize that that could still happen even if you had been vaccinated. And unfortunately, it hit me really hard. The fatigue didn't stop for months. I was falling asleep at my desk during work calls, stuff like that. It was very disruptive, and I developed muscle spasms throughout my whole body. It was very strange. I wasn't deficient in any, you know, electrolytes or anything like that, but that went on for about six months. All of fatigue and anxiety and stuff like that.

[Erin]

It's really interesting how we don't hear more about long Covid. I had a friend who had a similar situation to you, and for six months their life was completely upended. And I mean, we have heard the term long Covid, but I don't think people fully understand how much it impacts someone's life and how much it takes from them. And I don't think it's really been discussed publicly enough.

[Michelle]

Absolutely, I agree. And my kind of long Covid was not exactly very long, like some people. It's been going on since, you know, 20, 20, 2021. Mine technically lasted six months, but I think even, you know, anywhere of three months, that's still considered long Covid, but people don't know about that. So after about six months, those particular symptoms all had stopped. But then I wake up one morning and my right foot is burning. It just. It's this scalding stinging sensation. And that didn't stop. And so that was what started everything. I did not know what was going on. At first I thought maybe this is something ordinary like plantar fasciitis, even though I hadn't been overdoing it standing or walking too long. So of course I go to the podiatrist because regularly saw one for other foot issues, and they treated me for plantar fasciitis, but it didn't improve after that.

[Erin]

So when you say burning in your foot, what did it feel like? Did it feel like muscle soreness? Did it feel like a burn? How would you describe that feeling?

[Michelle]

Yeah, kind of like a. A bad sunburn that just wouldn't let up.

[Erin]

So, like, if you touch the skin, it would hurt. Like, you know how you, like, hit a sunburn and you're like, ah, like. Like that?

[Michelle]

Not exactly, no. It. It felt deeper than that, which is why I thought it might be plantar fasciitis. It. It just felt like it was coming from within.

[Anna]

Were you able to walk on it?

[Michelle]

I Could walk on it, but it was painful, Very painful.

[Erin]

And just one foot, not both feet.

[Michelle]

Right. It started in the one foot.

[Anna]

And did your foot look like a normal foot?

[Erin]

Good question.

[Michelle]

That's a very good question. It did, at least at first. I did wear socks around the house often, but not at night. And at that point and for a long time, I was not noticing any differences visually when this first started.

[Anna]

So you see, the podiatrist, they diagnosed you with plantar fasciitis. Do they give you like, stretching exercises or like the. The ball that you roll on the bottom of your foot?

[Michelle]

Yes, both of those. And then insoles. Yeah, insoles. I. I did have custom orthotics made and a lot of icing, which was necessary, especially at night. It was way worse at night and the pain would wake me up. I would only get a couple hours of sleep at a time. I'd wake up and have to ice that foot just to be able to go back to sleep again.

[Erin]

So that. That seems odd to me because usually, you know, I've had plantar fasciitis. Usually when you go to sleep, it feels great. It's when you get up in the morning that it's the worst.

[Michelle]

Right?

[Erin]

Because the foot is not warmed up. And then when the foot warms up a little bit, it's better, and then you push it too far and then it hurts again. So to me, that immediately is not the typical experience of platar fasciitis.

[Michelle]

Right? No, that's. That's exactly right. That was not my typical experience of it in the past either. So it was very confusing and the symptoms did not go away. After that usual treatment, the only thing that was helping was the ice, but it had to be done very often.

[Michelle (alternate voice or inner thoughts)]

So it was really starting to affect me. After that podiatrist appointment, it just kind of kept getting worse. So I'd wake up in pain, and at this point I'm bothering my partner who's sleeping next to me, because I keep having to get up every couple hours and get a new ice pack. And then I started getting really cranky during the day, you know, rightly so, because I am not sleeping very well. And emotionally it was. It was not great for my mood, it was not great for my well being in general, and it was impacting my partner as well.

[Michelle]

So that's when I started to get worried because the treatments were not helping. And what else could it be? Is this something way worse, Something more difficult to treat? So at that point I went back to the podiatrist and they did an ultrasound on my foot which showed absolutely nothing. And the podiatrist was like, yeah, it's got to be nerve pain if it's not plantar fasciitis. And I, I was thinking that too, that it was probably nerve pain if the ultrasound showed nothing.

[Anna]

More commonly it's called nerve entrapment. And that's if you think of carpal tunnel, you think it's in the cubital tunnel. The nerve is being compressed in an area. So in the foot there's the tibial tunnel. There's something called a Morton's neuroma where the nerve is being compressed and there are different parts within the nerve that help with different functions. So a nerve is both sensation, it's temperature, it's vibration, it's called proprioception or like knowing where you are in space. So different parts of the nerve can also be compressed. But the pain, we typically describe nerve pain as paresthesias, which are painful pins and needles. That's the best way to describe it. But burning pain also goes along with nerve related pain.

[Michelle]

Yes. And that was the next thought, that it was probably a trapped nerve. But that podiatrist didn't offer me really any next steps.

[Michelle (alternate voice or inner thoughts)]

I was not having a good time with him. Like I can literally just picture him still just kind of shrugging and saying, yeah, I guess it's nerve pain. And I didn't even know what to say. I was just like, okay. And he just offered me nothing. And I left and thought, okay, maybe best case it's something structurally pressing on a nerve and I can go to the orthopedic doctor and they'll be able to figure it out and give me a treatment plan.

[Michelle]

So I decided to go to an orthopedic foot specialist.

[Anna]

Michelle could, if you could draw a map, a pain map, where was the pain on your foot?

[Michelle]

Yes, it was the bottom of my foot, pretty much all of it, all the way up to my toes. So it wasn't the top of the foot really, but coming from the heel up to the toes. So that's why he thought Morton's neuroma probably at the top and maybe also something else towards the heel. And so at that point, the orthopedic foot specialist, you know, he put me on a really strong anti inflammatory to try and help with what we thought was, you know, that kind of inflammation surrounding those trapped nerves and that did not work.

[Erin]

Did you have any side effects from the anti inflammatory medication?

[Michelle]

I did end up with a major issue down the line. I Developed a stomach ulcer from it. Oh, wow. Yeah.

[Erin]

I was going to say, because they're no joke. And if you're jumping right up to the hardcore, that is not necessarily the easiest thing on the body. I think sometimes we say medication and it's like, oh, she's just a medication. But like, every medication has side effects, especially when you're taking something that maybe you don't need.

[Michelle]

Right, right.

[Erin]

So rough.

[Michelle (alternate voice or inner thoughts)]

Rough it.

[Michelle]

Yeah. Having an ulcer on top of all this pain was the worst. So the next step, we did a steroid injection. And he told me that the length of the relief from the pain would determine the next steps. But of course, that did not help. And I was very, very frustrated.

[Erin]

So not at all like.

[Michelle]

No.

[Erin]

So it's not. It's not inflammation. Inflammation in any way then.

[Michelle]

Right.

[Erin]

Because steroids will.

[Anna]

And sometimes we do do steroid injections as both diagnostic and therapeutic. So if you do a steroid injection, like I'm hand surgeon, we do it for carpal tunnel. If I do that injection and you get pain relief for even a couple of days, okay, then I know, okay, it is the carpal tunnel. But the steroid alone is not sufficient. So that's when we do the surgery to release the carpal tunnel. If I do a steroid injection and nothing happens, now I'm thinking, well, maybe this isn't carpal tunnel at all. Maybe this is a pinched nerve in your neck or I'm thinking of other reasons. So sometimes you do the injection not just for the trying to cure it, but also just to help diagnose it.

[Erin]

Also, my brain is just processing that you said you can have a pinched nerve in your neck that messes up your hand. Hand.

[Anna]

Yeah. And that's. Well, certainly for you, you know, did anyone check out your back? Think about, you know, L5s1 nerve roots.

[Michelle]

Yeah. So then the next step, the orthopedic doctor kind of washed his hands of me and said, well, maybe you should go to a pain specialist. So I go to the pain specialist and he asks me about my back and, you know, make sure everything is fine there. And it is. And he offered a nerve block. So it's, you know, another injection, but I think a little bit different in terms of what's in it and where it went. So he does that. Still no relief after that. So then we do an MRI of my foot, and that comes back completely normal. So at this point, you know, I know that there is something wrong, but these doctors, I'm getting the vibe that they're Thinking this is all in her head.

[Erin]

I was going to ask, so how long did it take to someone say it was stress or anxiety or depression or some other mental health related issue?

[Michelle]

You know, they. None of them actually said it.

[Erin]

But you felt it. You felt that they were thinking that.

[Michelle]

Yeah, I, I definitely felt it.

[Michelle (alternate voice or inner thoughts)]

And at that point, it had started to ruin my entire life. I would wake up and, you know, my feet on fire every single morning and just think, how, how is this happening to me? Why me? You know, it just. It's never something that you think will happen to you. But for me, for so many, I mean, months, it just didn't feel real. It just felt like, I'm gonna wake up tomorrow and this is all gonna be a bad dream. It will have just been a nightmare just not being able to do a lot of the things that I was able to do before. And at that point, I had to move into a separate bedroom than my partner because I was keeping him up.

[Michelle]

Throughout the whole night.

[Michelle (alternate voice or inner thoughts)]

And it was really affecting our relationship and obviously both of our sleep schedules.

[Michelle]

So at that point it's like, okay, I know that there is something wrong, but the pain specialist also then washes his hands of me and there's no next step that's offered.

[Michelle (alternate voice or inner thoughts)]

And just since the start of this whole thing, it's been physically, emotionally, mentally exhausting overall.

[Michelle]

Just the whole process of me having.

[Michelle (alternate voice or inner thoughts)]

To advocate so hard for myself to be able to figure this out and not getting that assistance from these providers who you would hope would have some stake in helping their patients figure these things out. And that's not what was happening.

[Michelle]

You know, I've. I'd been blown off by doctors before, and I said, okay, I'm going to see what I can research on my own. So when I got the diagnosis of.

[Michelle (alternate voice or inner thoughts)]

Just this general nerve pain, I. I wanted more information about that. I needed to know what exactly was causing it so that I could get treatment for it. I wanted the exact thing to be confirmed so that I would have a path forward.

[Michelle]

So I've.

[Michelle (alternate voice or inner thoughts)]

I've always just been a big researcher.

[Michelle]

And I come across more diagnostics, like getting a nerve conduction study. So I brought it up to the.

[Michelle (alternate voice or inner thoughts)]

Pain specialist and at first he was like, I don't really know why you would want or need this, and it seems kind of excessive. And I said, no, I want to be sure if this is something going on with the way that my nerves are going through my body and having a problem there, I want to know one way or another. So I Just kept on it until he relented and sent the order.

[Michelle]

So they send me to get the nerve study and of course results come back normal again. So then I'm like, you know, this.

[Michelle (alternate voice or inner thoughts)]

Is just really bleak feeling, just deflated and defeated that this is yet another thing that does not explain what's going on. And you know, now what do I do?

[Michelle]

I felt like I had exhausted every last diagnostic option and no one wanted to help me get better. And I, I didn't know what to do. I just, I knew that I was in agony and this was not getting any better. And at that point, not long after this nerve conduction study, the pain started up in my other foot and I got very, very concerned.

[Michelle (alternate voice or inner thoughts)]

That's the point where I said, these people are not going to help me. I have to just go back to doing even more research. I had no other options. I had seen however many specialists at that point and nobody was able to give me any concrete answers or any treatment that actually worked. And so that was the only option, to go back to doing more research on my own and figure it out one way or another. So I've, I've always been a big researcher. For my undergrad degree I majored in sociology and there's a big research component to that. So it's been in my nature since then to research anything and everything that I'm curious about that I don't know. And so I just started with Google really and started putting my symptoms in and just reading through everything, every possible cause of foot pain.

[Anna]

Michelle, did anyone ever mention a condition called complex regional pain syndrome to you during this time?

[Michelle]

No, they did not. Yeah, so I started researching on my own. I started digging into medical journals and I did on my own searching, come up with that, but it, it didn't really make sense. It didn't fit everything. And another thing that kept coming up in the research was erythromylalgia, which is a rare heat related condition. And I thought, there's no way it can be this, this, this seems like it's autoimmune. But it, I just kept coming back to that condition. And so I said, okay, I, I'm going to run some DIY experiments to see if this does make sense.

[Erin]

So before we go into those experiments, can you give just a little bit more context about what that condition is and what the symptoms of that condition are, just so we can go into those experiments, kind of understanding what you're looking for?

[Michelle]

Yeah, absolutely. So it's a heat related neuropathy condition. So when extremities get hot, they start feeling like they're burning like the worst sunburn you've ever had. And the skin gets red, really red. So it's basically neuropathy, but it's triggered by heat. And it's not just heat either. It can be triggered by pressure, sleep, exercise, any kind of exertion.

[Erin]

So anything that gets like your heart rate up, essentially.

[Michelle]

Yeah, anything that gets body.

[Anna]

Yeah. Brings more blood flow to the area.

[Michelle]

Yes, it's really rare. Most people have never heard of it. So I was thinking about it pretty.

[Michelle (alternate voice or inner thoughts)]

Clinically, like, okay, this unfortunately is probably what it is, but now I need to be sure and this is what I'm going to do about it.

[Michelle]

So I decide I'm going to put sneakers on and walk around outside for a while on a hot day. I think it was 80 degrees that first day that I started doing it. And that resulted in searing pain. And I took my shoes and socks off and my feet were bright red. And so that was like, okay, that this is bad, but I'm going to continue trying to do some more experiments, similar things.

[Erin]

Michelle, you are brave, especially since you don't know what might happen at the end of these experiments. Yeah, bold, bold choices here, but also mad respect.

[Michelle]

Yeah, I had reached that point. What else was I going to do?

[Erin]

You know what, I get it. It makes absolute sense. If no one's going to do the science for you, then you're going to do the science yourself. So we love a baddie with a brain.

[Michelle]

You know, science, Science is your friend. So the next thing I did, I, I went to a grocery store and I was thinking, okay, let me walk around in this store that I know is usually very cold, like, you know, like a walk in fridge, basically. And I had sandals on and I walked around the store for, for quite a while, which, you know, normally I would. I was having a problem with walking that much, but I didn't have any pain walking around in that cold store. So that was the second thing that was like, okay, if it's cool enough, I'm not having a problem with my feet, but if I'm walking around when it's hot, then I have a problem. So I, I repeated these things a few times and especially as was like the end of May, early June at that point. And every time I would walk around outside in the heat, I would get that searing pain and my feet were bright tomato red. And at that point I knew what I had. I knew it was that condition. I proved it to myself and I.

[Michelle (alternate voice or inner thoughts)]

Sat down at a picnic table, and that's when it just really hit me that I really have this. And it was just kind of surreal and horrifying to know that that's what it was. In that moment, I thought, this is probably what I have. And this disease, if it is officially what it is, there's no treatment, and there's no cure for it, and it's a lifelong progressive condition. And so it was a bad moment having that sink in, having it come from the back of my mind to the forefront and sit there.

[Anna]

Could you make your feet feel better?

[Michelle]

Yeah, it was. The ice and cold water would make it feel better. That was the only thing, and that was another piece of proof for me.

[Erin]

How cold would it have to be for you to feel a difference in the sensation of your foot?

[Michelle]

So it didn't have to be ice water, but it did have to be pretty cold. You know, like when you're walking around all day long and you just want to put your feet in cold water at the end of the day, that same kind of relief, but really, really relief.

[Anna]

It's fascinating because it's the complete opposite of a very common condition that people are familiar with, which is called Raynaud's syndrome.

[Michelle]

Yes. And another interesting piece of this puzzle is I also have Raynaud's syndrome. I've had that for about 10 years.

[Erin]

Are these two conditions related?

[Michelle]

Yeah, they're both temperature related. Neuropathy.

[Michelle (alternate voice or inner thoughts)]

So it's.

[Michelle]

It's the blood vessels. When they get cold, they constrict, and when they get hot, they expand. So my blood vessels and my extremities are pretty messed up. Another reason why I thought, I can't possibly have this one, because I already have Raynaud's, which is the opposite condition. But then in my research, I kept coming up with a lot of other people who had both. So it does not seem as uncommon as suggested in the research, although there's not a whole lot of research.

[Anna]

Although the underlying mechanism is this is the same in that the reason how and why a blood vessel constricts or dilates is in direct response to the nervous system. So the nerves tell the blood vessels to constrict, the nerves tell the blood vessels to dilate, and in this case, it just seems like it's just a case of faulty wiring. Right. Something has tripped the faulty wiring.

[Michelle]

Yep, exactly right.

[Anna]

So you've done these experiments on yourself. Did you tell a doctor that this is what you were doing? And did you tell them what your working diagnosis was?

[Michelle]

Yes. So I see a neurologist for a separate condition. He specializes in movement disorders. But I had an appointment with him and I told him, this is what I have done, this is what I have, and here's the evidence. And he's never seen it before. He doesn't specialize in that particular kind of neuropathy. So he Googles it right there in the office and he says, I, I'm not very familiar with this, but based on what I'm reading and based on the experiments you've done, you're probably right, that's probably what it is. And he says, you should go back to the pain specialist with this evidence that you've compiled. So that right there was kind of the validation that I needed to tell me that I was not crazy. And at least at this point, I have a doctor saying that's probably what it is, you know, So I called the pain specialist office before I went in, went back in and asked them if they had ever heard of this condition. And the physician assistant had heard of it, and she actually said that she treated four other people with it. So I made an appointment with her instead of the doctor, and 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. I knew that when I had brought all this evidence to them that, you know, unfortunately I, I know what this is and it's bad, but at least it has an official name now at this point.

[Michelle (alternate voice or inner thoughts)]

But it was definitely not, not a.

[Michelle]

Fully happy moment at all.

[Michelle (alternate voice or inner thoughts)]

I was just really exhausted at that point. Just tired of, of looking for answers, of fighting for myself to have to do all this and all of the steps that I had taken to get to that point, I was just defeated. I, I knew what the diagnosis meant for me, and so that was really sad for me at that point.

[Michelle]

So I knew from doing this research that there was no cure and that there's not really, or at least there's no one specific treatment for this disease. It's kind of just off label stuff and trying a whole bunch of things for, you know, trial and error.

[Erin]

So this is technically autoimmune, correct or.

[Michelle]

No, it is not. Oh yeah, in my case it is not. There's, there's primary, where some people are born with it and there's a genetic component there. And in my case, it seems to just be related to the issue with the Raynaud's. So yeah, not, not autoimmune and in.

[Anna]

This case, but considered an autonomic Dysfunction.

[Michelle]

Right.

[Anna]

A disease of the nerves.

[Erin]

That was a big word. Autonomic dysfunction. That means a bane issue, a nerve issue.

[Anna]

So your nervous system, you have the nerves where you are intentionally lifting your arm, you're squeezing your hand, you have control over those nerves versus the autonomic nerves are the nerves that are in charge of everything that you can't control. So your heart beating, your vessels dilating, your stomach peristalsing. So that is the autonomic system. Those are nerves that are subject to the sympathetic and the parasympathetic nervous system. Right. The fight or flight type responses. So if you are about to lift a car off of a child, your sympathetic nerves go into overdrive and you get all of this crazy strength and everything. But then when you're asleep and you're just vegging out the parasympathetic. Right. Nerves take over and do all of the digestion and things like that. So this seems to be an error of your autonomic system.

[Erin]

Right.

[Anna]

You can't physically do anything to change it.

[Michelle]

Right.

[Anna]

But I mean, to me it sounds like you have had this problem with the nerves that control your blood vessels, but that this exposure to Covid, another environmental trigger, accelerated a different manifestation of the problem.

[Michelle]

Exactly. So I think that that and. And Covid being, you know, kind of a vascular condition as well, I don't think that that helped.

[Michelle (alternate voice or inner thoughts)]

It is possible that I would have.

[Michelle]

Ended up with this anyway. But it is equally possible that getting Covid was the catalyst for developing this part of it.

[Erin]

Was Raynaud's a part of your life before COVID and if so, how, how much were you impacted by it? Because obviously we know, like, these conditions can affect you more or less for a variety of different reasons. Right. So how, how much were you affected by rain outs prior to Covid?

[Michelle]

Yeah, so, you know, I'd had it.

[Michelle (alternate voice or inner thoughts)]

For like eight, almost eight years before.

[Michelle]

That, and was more of just an annoyance at that point. Up until I got covet in the winter, I would have to wear, like, very warm gloves and warm socks and boots just to make sure that my hands didn't go numb or my, my toes didn't go numb. But it was not a very big part of my life. And then when I got Covid, the winter after, when all of this started, the Raynaud's also got a lot worse than it had been any of the years prior. So I think it really sent everything into overdrive.

[Anna]

And so what were some of the off label trial and error treatments that you tried?

[Michelle]

Yeah, so the first Thing that we tried was low dose naltrexone. And that is what my pain specialist had put all of her other erythromyalgia patients on and had a lot of success with. And that was in combination with Lyrica. My neurologist also recommended that. So those were the two things that I started off with, both being, you know, kind of off label. But Lyrica works with neuropathy and the low dose naltrexone is relatively new in terms of certain things like this.

[Anna]

Yeah, I mean, low docental tracks has been around for a very long time, but we only now are using it for more kind of, we would call like intractable pain syndrome. So for like people with fibromyalgia or people with CRPs, even people with Ehlers Danlos related type pain. So it. It is, I would say, having like a wider use case.

[Michelle]

Right. And that unfortunately did not do anything for me.

[Michelle (alternate voice or inner thoughts)]

I just kept going back to the provider who had given me the official diagnosis finally. And she had hope because she had had a few other patients and she knew by trial and error what had worked the best for them. So she was hopeful that it would make a world of difference for me. These things that we were trying. And I was pretty frustrated that these things did not seem to help me like they had helped other people, these other patients. So I was, I don't even know how to describe it, just devastated, I guess, that these things were not helping me very much. And coming to the realization that my case of this disease is. It seems to be a lot worse than maybe the average person's experience with it.

[Anna]

So then what beyond those medications have you tried?

[Michelle]

I've tried everything. I joined a support group on Facebook for the condition and people had a lot of suggestions, a lot of things that they had tried. And because everyone with this condition is different, certain things would help for them and not the next person who tried it. So lots of different medications and some that are like, technically in the antidepressant class that worked for some people tried those that did not go well, some supplements, one of them being alpha lipoic acid. And that actually helped a little bit, but it tanked my blood sugar dangerously and I had to stop taking it. And then beyond the medications I actually tried, I did a trial of a spinal cord stimulator, which was not a fun experience by any means. And that unfortunately did not do anything for me either. And so over time, actually it. It spread to my hands and my face. So it did not stop at the feet, unfortunately.

[Michelle (alternate voice or inner thoughts)]

And it's terrifying. Living in this body that is working against you and being in, in the support group on Facebook has been a blessing and a curse, you know, blessing in terms of getting tips to make my life just even a fraction of a bit better with this, living with this disease, but then also just seeing the horror stories of people who it has progressed to pretty much their entire body. And so there is this very real fear of how much worse is it going to get. And I deal with that every day.

[Anna]

Michelle, question for you, which may seem a little strange, but do your feet and palms sweat?

[Michelle]

Oh, good question. Yeah, it's, it's a weird. I mean, my whole body is just messed up now, but my feet never really sweat before, even before all of this started. They really don't now.

[Anna]

So I say this because that sweating is your body's natural response to cooling.

[Michelle]

Yeah.

[Anna]

And the reason why I brought up CRPs in the beginning is that they have a condition called as part of the pain and the redness of also anhidrosis, they don't sweat. There's no sweat coming from. And you can't tell your body to sweat. Right. It's an autonomic nerve function. So it just goes along with the dysfunction of your autonomic nervous system because you're not sweating. Your body's own natural defense to this overheating, trying to cool the body is not working either.

[Michelle]

Right, Exactly. It's. It's a weird thing.

[Erin]

So where do you go from here? Is it just something you now have to live with or there is there any research or hope of some type of management in the future?

[Michelle]

Yeah, so it is. It's something that I have to live with. This is a lifelong disease and it's progressive. I don't know how much worse it will get, which is terrifying. And in the United States, there's no ongoing research for this disease. But a few months ago, I stumbled across a company in Sweden that has developed a gel that works on heat related neuropathy. And they developed it specifically for erythromylalgia. And they are talking with the FDA right now about trying to fast track it for approval in this country because I guess for, you know, for everything that you can say about the medical system in this country, things like going through the FDA for an orphan drug designation for rare conditions, it's the quickest way to get it to the market. So that's why they're starting with the United States first.

[Erin]

We've talked about this before on the podcast. You're absolutely right. For all the Rigmarole with insurance and all of those things, we do get medications quickly and we do have more medications available that also comes with that cost. Right. So you're absolutely right. And I think that it's good to know that at least somebody's working on something that's a piece of hope.

[Anna]

Well, Michelle, first of all, thank you so much for sharing your story. And my heart goes out to you because I know how pain affects every minute of your day. And then the fact that you don't, because you don't know how to stop it, the, the fear of the progression is what I am hearing from you is probably the most worrisome thing. And I hope that with more awareness, you sharing your story, getting more people, I guarantee you there are more people who after Covid have had similar problems. Just they didn't have the forethought to run their own do it yourself experiments like you did. They. Unfortunately, it had probably a lot of dead ends. So I really applaud you into. When we talk about being an advocate for your health, you are the ultimate advocate.

[Michelle (alternate voice or inner thoughts)]

Yeah, I am resourceful.

[Michelle]

If nothing else.

[Erin]

I think what's really cool about your story, and I think it's the only, like, I don't wanna say positive because it's a sad situation that you're in now. But I think to Aaron's point, you're a great advocate for yourself, but I think there's a lot we can do to test and figure out our own medical situation. Obviously, we always need to get that validated. But if someone's listening to this and feels stuck, Michelle, you're a great example of doing that research and testing things on your own and coming to your doctor with proof, right? Saying, these are the things I did, these are the tests I did, this is the information I have. So a lot of people will, you know, read PubMed or read those journals and say, oh, I have this condition, but not take it that extra little step to figure out if it's reacting in the way. And I think that's a smart thing you did that a lot of people have not done and definitely has made me think about in the future if I have to figure something out to, to be a little scientific about it. Let the nerd come out.

[Michelle]

Yeah. And I guess there's the difference between diagnosing your own death on WebMD and actually like doing these experiments yourself.

[Michelle (alternate voice or inner thoughts)]

Like which.

[Michelle]

Yeah, you gotta, you gotta walk that line, I guess.

[Michelle (alternate voice or inner thoughts)]

But I've talked to people who've been trying to get answers from doctors and.

[Michelle]

They just take what they say and.

[Michelle (alternate voice or inner thoughts)]

That'S the end of it. They don't ask any other questions or insist on specific tests or anything like that. And I really recommend to people that if anything in the back of your mind is saying this doesn't really sound.

[Michelle]

Right or is this all there is.

[Michelle (alternate voice or inner thoughts)]

To it, like, you just follow that and it's your right to ask questions. It's your body, it's your health, your own well being. You have every right to be in control of it. And unfortunately, a lot of times you have to be your own best advocate because that's what it comes down to.

[Anna]

Well, thank you again for coming on.

[Erin]

Thank you.

[Michelle]

Woo.

[Erin]

So that, that was a short but sweet episode, but I feel like if there's one thing everyone should take from this episode, it's this is your body. You can test and learn from it.

[Anna]

Absolutely. There is an incredible YouTube talk right now from Dr. Feigenbaum. He is a physician out of Upenn and when he was, I think a med student, he came down with a very rare cancer and when no one could help him, he just started testing on himself. And now he had the luxury of being part of the medical system. But when I talk about, you can start certainly do things with your own body, you know, to, with certain, you know, restrictions and limits. But everything that Michelle did was something that people can do on their own. It doesn't have to be some big fancy thing in a lab. You don't necessarily need blood draws, you don't need CT scans. Sometimes it's simply logging your symptoms and introducing new, like what she was introducing things that were hot, things that were cold. So absolutely you can be proactive in your own diagnosis. Discovery journey.

[Erin]

We've talked about this before, but I think it's important to just highlight again that knowledge is power. So if you are going through something and you are struggling to get a diagnosis, the more you can document testing as well, but also just documentation of like this happened at this time of day. Being able to say when the pain is worse or when the pain is better, not only will it help your doctor find a diagnosis, but it also might help you see some patterns in what's happening. So it's a different way to be scientific, but still learning about your body.

[Anna]

And we say this all the time, but you know your body the best. And if something, and I think you said this before, which I love, you're like, if you clock it, something is up. So this was, I thought just like a really empowering episode to hear what Michelle did. And also a great, great example of the doctors who they did not know what this was, but they were very responsive to the research and the work that she had done. And she did, as she pointed out, was a bit lucky that she came across a doctor who had come across this condition before, which helped in the validation, believing that this is what she had. But to me it sounds like she has a great partnership with those physicians and that's half the battle.

[Erin]

I would completely agree. When you work with a doctor that doesn't know your condition and the first thing they say is hey, can you send me something so I can learn more about it or is there any resources? A lot of people will look at that and go, my doctor doesn't know. But that is actually a doctor trying to learn. And that is the best thing you can ever find because as we've discussed many times on this podcast, doctors are not all knowing. But 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.

[Anna]

And in the end we are still the gatekeepers to the solutions. So you are going to need a doctor to write you a prescription. You are going to need a doctor to make that referral right to that certain specialist for this test or whatnot. So I thought it was a great example of working, you know, with and listen, she had seen other doctors who were just like, well, I've exhausted my part and sometimes that is part of the path that you have to take. But in her case I just, I thought it was really resourceful to do these experiments on her own, to do her own research to come with the proof that she had to her doctors and, and then try and come up with a plan utilizing all of the lived experience from the patients who she met on Facebook groups who to be honest, when you are dealing with aware condition, a lot of times they are the ones with the most up to date knowledge and it may just be based off again an N of one right personal experience, but it's at least a starting path. And again, if you have your own story that you think would be helpful for someone else to listen to, please send us an email. Send it to storieshemedicaldetectivespodcast.com we really appreciate all the times you are sharing the podcast. Every time you are commenting on the podcast. The more people hear about this, the more I am confident that people who need to hear this podcast will hear this podcast.

[Erin]

And we hear it time and time again from the people who come on this show and tell their stories that the reason they're here is so they can help someone not experience experience the same long journey to diagnosis that they have experienced. And the way we prevent that is by sharing these stories more broadly.

[Anna]

So until next week, see you guys.

[Erin]

The Medical Detectives is a Soft Skills Media production produced by Molly Biskar Sound designed by Shane Drause if you have a medical story you'd like to see featured on the Medical Detectives and please email it to stories medicaldetectivespodcast.com the information.

[Medical Disclaimer Narrator]

Provided on the Medical Detectives is for informational and entertainment purposes only and should not be considered medical advice. While we may feature licensed medical professionals, including doctors, we are not your personal doctors and no doctor patient relationship is established by listening to this podcast or interacting with our content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified healthcare professional before making any medical decisions or taking any action based on the content of this podcast. Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show. If you are experiencing a medical emergency, please contact emergency services immediately or consult a qualified healthcare provider.