Erythromelalgia & Raynaud's Post COVID - What Has Helped

I’m sitting in a coffee shop in Miles City, Montana, and I don’t really feel like writing but they say successful writers are those that write even on the bad days when they feel like they have nothing to write about, when they seriously doubt there is anyone out there interested in what they have to say. So with that in mind, here goes…

In my previous post I wrote out a longggggg list of supplements, medications, and therapies I’ve trialed on my quest to relieve the troubling symptoms I experienced after a mild bout of COVID back in early 2020. For a long time I resisted writing about my symptoms because I wanted them to go away and I was afraid they wouldn’t go away if I was giving them all my attention. I’m typically the the type of person who rarely gets sick with anything more than the occasional cold or flu, and previous to COVID, I had never struggled with chronic issues. To say this has been a humbling experience is putting it lightly, and my heart goes out to the many people out there who struggle with autoimmune disorders that come with laundry lists of strange symptoms that come out of nowhere and stubbornly do not go away.

My post-COVID symptoms didn’t appear until several months after I first contracted the virus. It started with my feet turning white in patches (Raynaud’s phenomenon) when exposed to cool temperatures. It progressed to my feet turning bright red, and then my hands, but without pain or burning sensations. They were simply bright red unless I had them elevated, and it was my mom who first pointed it out, telling me my feet looked like they did when I was sick with Scarlet Fever as a young child. Initially, due to the lack of pain, I wasn’t too concerned; I was mostly curious as to why my feet were changing colors so often. But it got so that my feet would swell and burn painfully during exercise, such as walking or jogging, or anytime I was out and about in hot weather. It progressed from there to where I had nerve pain in my lower legs (an odd ache that went from my feet to my knees) and my feet and hands were burning almost all the time and were the disturbing hue of boiled lobsters. The extent to which my veins bulged was truly alarming. If you want to see the photos, see this post. My feet got so hot at night, they would heat the end of my bed so that my sheets and blankets felt like they had just come out of the dryer. It was around this time that I went to an emergency room in Colorado Springs, where I was living at the time and, after nine hours and being told by multiple doctors that they had no idea what was wrong with me but that clearly something was wrong, I was diagnosed with erythromelalgia and told there was nothing they could do for me, as there was no specific treatment for it.

If you’re reading this and don’t know what erythromelalgia is, see this article for a thorough explanation. Is it speculated that for folks like me who have experienced erythromelalgia after having COVID or after receiving the COVID vaccine, the disorder is either the result of a dysregulated immune system or from damage to the neurovascular system caused by the virus itself, either during the initial infection or via lingering spike proteins.

Fast forward nearly five years post COVID to today and I am in a much better place—physically, mentally, and emotionally. I basically went down so many rabbit holes researching my condition that I exhausted myself and eventually gave up and started looking at how I could feel better in other ways, how I could shift my focus away from my burning feet and direct it towards what’s most important to me, my goals and aspirations, where I want to be in five, ten, twenty years from now and beyond. I have come SO FAR from where I was just five years ago, and Long-COVID be damned, I’m not about to stop now.

I’m happy to report that I no longer experience pain associated with erythromelalgia and Raynaud’s. My hands and feet still sometimes turn strange colors (red if I’m hot, white/yellow/purple if I’m cold), but they don’t hurt like they did for the first few years with this condition. (I’m extremely vain and the discoloration is hard for me to accept but I’m no longer freaking out about it.) An even bigger win is that I no longer experience chronic migraines, tinnitus, or heartburn. The heart palpitations, dizziness, brain fog, and dissociating all stopped as well. (The last was perhaps the most frightening.) All of those symptoms are gone. It seems like a miracle, particularly in the case of the migraines, but it’s true, I am pain free and I can think clearly and I will never take this for granted again.

So how did I get here? I might frustrate some of you with my answers:

• I took a whole body and mind approach to helping myself feel healthy and balanced. Instead of zeroing in on my Long COVID symptoms, I panned out and looked at where I could make life changes that would benefit every bodily system, especially my mind.

• I stopped trying to treat the condition with supplements, medications, diets, novel therapies.

• I stopped researching the condition.

• I accepted that I may very well have this condition for life and decided I am OK with that. I let go of expectations about my body’s healing capacity. I decided my body is functioning as designed. (I recommend this book if you need help you with this.)

• I stopped feeling sorry for myself.

• I shifted my focus away from my condition and onto my greatest goals.

• I got on with my life.

None of this is easy when you’re living with a chronic condition. I did not have the worst of the Long COVID symptoms, and I realize many people cannot just give up on treating their symptoms when those symptoms include severe post-exertional malaise, racing heart, and POTS and it’s affecting whether or not they can even get out of bed on any given morning, let alone function in society. However, if you’re like me and your symptoms are life changing but not life threatening, I encourage you to explore ways of learning to let go of your fear around your symptoms, so that you can get on with your life. NOT EASY, I know. I get it. But take it from me, it’s worth a try.

This is my last post in a series of three about erythromelalgia and Raynaud’s post COVID:

If You’ve Been Wondering Where I’ve Been…

Burning and Freezing…

What Has Helped…

If you're wondering where I've been, it's to hell and now I'm slowly making my way home again...

It’s been four years since my last blog post and if there’s anybody out there still listening, let me begin with the positives:

• I received my Master’s Degree in Humanities.

• I landed a job as a Communications Analyst for the Colorado Benefits Management System at the Colorado Department of Human Services.

• I bought a house in Everson, WA, where I now fully support my father, two equines, two canines, and one feline.

• I overcame a severe 30+ year eating disorder. Yes, THIRTY-PLUS YEARS! Its roots began in childhood.

• I’m working on the final draft of my first novel.

Wowza! Those are five significant life accomplishments and as silly as it may sound, as I look at this list I have the feeling of being outside of my body, as though I wasn’t the person who actually accomplished those things. As though I’m writing about someone else. Because it seems I couldn’t have possibly done all of that whilst struggling with all of this:

After I returned home from Europe in November 2019, I developed chronic insomnia and restless leg syndrome to the point where I was sleeping only 2 to 3 hours per 24-hour period. (It was COOCOOBANANAS and I partially blame it on my mother, whose basement I was living in, and who has a habit of stomping to the extent of rattling dishes.) Then, in the spring of 2020, my hands and feet suddenly began to turn bright crimson red whenever I was exposed to warmth or sunshine, and during even the lightest of exercise (such as walking on a flat surface in cool weather). With the redness was an intense burning sensation (like a bad sunburn), and dull (but very annoying) nerve pain. When I was exposed to cold, it was the opposite: my feet and hands became ghostly white or pale yellow, or sometimes, a mixture of both: disturbing patches of red and white. People would point at my hands or feet and exclaim things like, “Oh my goodness, do you have jaundice?" Or, “Your feet are terribly sunburnt, you should get out of the sun immediately.” My mother told me my feet looked exactly as they did when I had Scarlet Fever as a child, when my hands, feet, and mouth turned—hence the name—scarlet red.

It didn’t take long before there was no more normal; my feet and hands were either burning red or too bloodless to function. In addition, I developed relentless tinnitus, chronic migraines that lasted days at a time, heart palpitations, incredible fatigue, joint inflammation (particularly in my fingers), strange new allergies, and brain fog. After spending eight hours in an emergency room only to be told they weren’t sure what was wrong with me because my labs were perfect, I was diagnosed with erythromelalgia (the doctor had to Google my symptoms), combined with Raynaud’s phenomenon. Both are neurovascular disorders of the blood vessels, with Raynauld’s being the more common.

Since then, I’ve spent thousands of dollars on doctors, herbalists, supplements, chiropractic, massage, acupuncture, energy work, and even a psychic, but my symptoms have persisted. Frustratingly, there are no specific medical treatments for EM, as the root cause varies from person to person, and most doctors know very little about it (if they’ve even heard of it—most haven’t). Through research, I’ve come to understand that my own case is likely the result of an autoimmune response to COVID that triggered a form of neuropathic dysautonomia. In addition to the EM, Raynaud’s, heart palpitations, migraines, and tinnitus, I also experience acrocyanosis, bier spots, and bulging veins—all commonly seen in people who have postural orthostatic tachycardia syndrome (POTS). Thankfully, I do not have the more debilitating POTS symptoms, such as a racing heart and fainting upon standing up.

I’ve put off publicizing my condition because I worried that by writing about it, I would be giving it more attention, which would do nothing but encourage its troublesome influence on my life. But after four years of teeter-tottering between Boiled Lobster and Frozen T-Bone, I’ve recently come to accept that these symptoms are not going to just go away. I also have a pretty good hunch there are lots of people out there in the same boat, perhaps paddling frantically in circles the way I’ve been doing for the past four years. So, if you’ve been struggling with the same issues, please don’t hesitate to leave me a comment or reach out. In my next post I’ll share photos and some info about what’s helped and what hasn’t. Hang in there.

I’m smiling but my hands and feet are burning.

(The next post will show pictures.)