Heat Desensitization - Erythromelalgia in Remission!

My EM in early November - red, hot, painful, swollen toes

 

 I scarcely know how to write this blog post because I am still shocked and mystified by this whole thing, but my Erythromelalgia (EM) has been in remission for 2 1/2 weeks now. I am absolutely delighted to be wearing socks and shoes again and able to turn up the house temperature a bit, but I still feel like I might jinx it!

What Is EM?
Briefly, Erythromelalgia (EM) is a very painful condition that causes:

• Burning pain and redness on extremities - often toes and feet, sometimes fingers and hands, and occasionally up the legs or arms, too. For some people, it also affects the face and ears.
• Affected areas are hot to the touch and give off heat.
• Some swelling and inflammation of affected extremities.
• Cold makes symptoms better; heat makes them worse - this is key and differentiates EM from  other possible diagnoses.

EM is a rare condition in the general population but seems to affect those with ME/CFS, Lyme disease, and Orthostatic Intolerance (OI, including POTS and NMH) far more frequently. This makes sense because these conditions all cause or are caused by autonomic nervous system dysfunction, which is also behind EM. I wrote a blog post last year describing EM and my own experiences in getting it accurately diagnosed. My own EM is seasonal, which is less common, and flares up when the outdoor weather turns cold (usually October through April), even though cold makes it feel better once it has started (I know, it doesn't make any sense).

My Experiences
So, fast-forward to November this year. We had a very warm October, so my EM stayed in remission longer than usual, but it began to flare up in early November, as soon as the outdoor temperature began to drop. Knowing from previous winters that it gets worse when my feet get warm, I kept the house temperature cool (something my husband hates), kept my feet bare, never wore socks and mostly avoided closed shoes, kept a fan blowing cool air on my feet whenever the pain started to flare up, and slept with my feet out of the covers AND a fan blowing on them to try to control the pain enough so that I could sleep.

I made a trip down to Baltimore to see a dermatologist at Johns Hopkins whom I had heard knew how to treat EM, but that visit didn't help much. I spent most of it trying to explain that yes, I DID have EM, even though my toes didn't look that bad that particular morning - I had kept them especially cold all weekend just so I could manage the long drive! He finally agreed (to the diagnosis I already knew I had!) and offered a compounded pain cream. I accepted the prescription for that but told him I'd really hoped to get at the root of the problem and not just treat the pain. I asked if I could try a medication called Trental (pentoxifyline) that is supposed to help ease blood flow, better allowing the blood vessels in the feet to constrict and dilate as they should, to avoid the excessive blood flow to the extremities that causes a bad EM flare-up. He agreed. Unfortunately, though the Trental seemed to help me temporarily the two days that I took it, it wore off during the night with a severe rebound effect, with the burning pain flaring up all over both feet, far worse than usual. After two sleepless nights where I had to keep getting out of bed to soak my feet in cool water, I gave up on that. (Note that Trental does help some patients).

Then we went on a short vacation to Florida. The pain was horrible on the way down there on the plane (I brought a small portable fan to blow on my feet throughout the flight), but I was hoping my EM would go back into remission with the lovely Florida weather, as it had during a similar trip the previous year. Most of the pain disappeared by the second day of the trip and by the fourth day, when we returned home, my feet were in remission again. That's when I decided to try something new.

My feet after 4 days in Florida - pain & swelling gone, redness almost gone

Heat Desensitization for Erythromelalgia
As I explained in that first blog post on EM, I joined a couple of groups on Facebook for EM patients. In one of those, a patient named Bob posted a long explanation of how he "cured" his EM with heat desensitization. He explained how he gradually got his feet re-adjusted to be able to tolerate heat again by soaking them in warm water, increasing the temperature a little at a time (this process sort of "resets" the dysfunctional nervous system). Bob said that, yes, this was incredibly painful at first, since heat worsens an EM flare-up, but he soon began to notice improvements and within a few weeks, his EM was in complete remission, and he was able to wear socks again and treat his feet normally. (Note that this kind of heat desensitization has also been used successfully in other, related conditions like Raynaud's - see my note at the bottom of this post).

Bob's post caused quite a stir in our group! People wanted details on exactly how he did it and had loads of questions for him. Many people began trying Bob's process and reporting back on their own improvements and remissions.

Intrigued by Bob's story, I looked for more information on heat desensitization for EM but couldn't find much. I read the only two books on EM (both about heat desensitization) available on Amazon: Erythromelalgia: How I Fixed It by Carine Prevot (no longer available) and Secondary Erythromelalgia Survival Guide by William E. Prowse and Lillie Lemon ($6.99 for e-book). Both books are overpriced since they are each 25 pages or less and poorly written (both needed an editor), but it did add to my body of evidence that heat desensitization does work for some people. Prevot used increasingly warmer hot water bottles that she rested her feet on, and Prowse used a complicated approach involving capsicum cream first and then warm water soaks (NOTE: some of the supplements suggested in the Prowse book would make OI much WORSE so should not be tried by those with ME/CFS or OI).

I did ask the Johns Hopkins doctor about heat desensitization, but he said he'd never heard of it. However, living with this condition was affecting my quality of life more and more. Just a few weeks (in November) of keeping my feet ice cold n an effort to keep the EM from flaring up was already very uncomfortable and frustrating. And all my efforts were sometimes for naught, when the EM flared up anyway with terrible pain, especially at night. I couldn't wear socks (or even shoes much of the time), I couldn't get outside or take walks in the winter like I usually do, and I had already broke down sobbing a couple of times from the pain...and the season had only begun! I really did NOT want to go through another whole winter like this.

My Own Heat Desensitization
We had a lot of travel in mid-November, first that trip to Florida and then 5 days in my hometown of Rochester, NY for Thanksgiving. I was really dreading that part because it's much colder up in Rochester, and people keep their houses warmer (everyone kept their house warmer than us!). I was picturing a painful holiday weekend for me, going barefoot in my relatives' homes, carrying the portable fan with me everywhere. My plan was to try the heat desensitization after we got back home.

At the end of our Florida trip, though, I started to re-think that plan and talked it over with my husband. My feet were already in remission from our warm-weather vacation - why go through another painful week and then endure more pain to desensitize my feet? Although nothing about EM makes much sense, it seemed to make logical sense to us to try to keep my feet in their current - normal - condition. Since my feet felt OK when the weather was about 70-80 degrees, why not just try to keep them at that temperature?

So, when we got off the plane in NJ, I immediately changed into sneakers and socks (all I had with me were toe-less socks!) instead of staying in flipflops like I normally would. It was about 45 degrees out that night. On the 2-hour drive home, I let my husband turn the heat up, and I kept my feet in the socks and shoes instead of attempting to keep them cool. When we got home, I put on - for the first time in 3 years! - warm fuzzy socks. It felt great for the moment, but would the pain hit me later?

My favorite warm, cozy winter socks - I missed you!

It didn't. It was rather anticlimactic but an unexpected surprise. I kept wearing shoes and socks, like a normal person does in November. I dug out my old slippers after three years of not wearing them. I let my husband turn the heat up! And, amazingly, I got through the whole Rochester trip - wearing shoes and socks! - without any pain, redness, heat, or swelling in my feet. I tried to just keep my feet at a normal temperature and not overheat them or cool them down.

Now, it has been two and a half weeks with no pain. I'm still in shock. Notice that I didn't title this post Erythromelalgia Cured! It's too soon to say that, and I do expect that it will flare up at some point. If/when that happens, I plan to follow Bob's protocol and get my feet desensitized to heat again with warm water soaks. I will act immediately and not wait for it to get worse. As Bob described in his explanations, the key seems to be to treat your feet normally. If you have EM and want to know more about his process, you can join the Facebook Group Erythromelalgia - Medicines/Treatment, Information and Support and search for "desensitization" in the search box - Bob's very popular post comes up in the search results. Many people--including me--are successful with a simple process of brief hot water soaks, several times a day, with gradually increasing time and temperatures (start at body temperature and never go above 120 F or you could scald your skin).

For now, I am thrilled! I'm wearing socks, shoes, and slippers again, taking walks on cold days, sleeping with my feet under the covers for the first time in three years, and joyfully digging through my collection of whimsical socks. It even makes me happy to see socks in the laundry basket. And I changed my Christmas list - removed yet another pair of flipflops from the list and added in slippers and BOOTS! You can't imagine how exciting this is for me.

I love seeing all those socks at the bottom of the laundry basket!

 If you also suffer from EM, I recommend considering this kind of heat desensitization process. Because my EM goes into remission seasonally, I was able to do it without any worsening of symptoms, but you might have to suffer through some worsening at first. Some people report improvement beginning as early as one day into the process, and based on my own experiences, I would suggest starting the process at a time when your EM is naturally less flared up (for me that was mornings).

NOTE for those with similar (though opposite) conditions like chilblains (aka pernio) or Raynaud's disease. I was fascinated to hear that a close friend of mine put her own Raynaud's into remission using a similar heat desensitization process (that approach was used successfully in this study). Because all of these conditions stem from autonomic nervous system dysfunction and related poor vascular control, it seems that they can all benefit from "retraining" your nervous system to respond normally to temperature changes.

Back from Vacation & Research Round-up

Hello! I'm still here! Or rather, I am back! My husband and I took took a vacation camping in Virginia this past week. This was a much-needed getaway for me after a painful and frustrating winter of often being housebound due to painful, swollen feet from erythromelalgia. My feet finally cleared up enough - and the weather finally warmed up enough - for us to take this trip.

My husband and I kayaking at belle Isle SP, VA

It was a wonderful, relaxing week for us. We took our pop-up camper (home away from home) and enjoyed two beautiful state parks in Virginia - Pocahontas State Park just south of Richmond and Belle Isle State Park north of Williamsburg. Both were lovely places, and we enjoyed some short hikes (still limited by my painful feet) and a bit of easy kayaking. On the one rainy day, we explored a bit of Richmond and had some great meals (good food while traveling, too). And we capped off the week with a visit to one of my college roommates and her husband (who also went to school with us) in Williamsburg - great to catch up and lots of laughs!

(If you are wondering how I can manage camping, travel, and outdoor activities, this blog post explains all that, with helpful tips).

On the ME/CFS side of things, the organization Action for ME published a Research Round-up. You can read all the details of the studies here. Though there is nothing earth-shattering here, it certainly shows continued advancement in knowledge of what is behind ME/CFS and how to diagnose and treat it. Here is a quick recap of the studies they list:

• An Australian study is investigating a potential biomarker for ME/CFS that could help in diagnosis. It's a specific protein that was higher in ME/CFS patients after standing than in healthy controls. More research is needed with a larger group to confirm whether this might work for diagnosis.
• Another study showed that brain function in people with ME/CFS was significantly worse 24 hours after a 30-minute stationary bike ride (while brain function improved after exercise in healthy controls). Though this fact is clear to those of us with ME/CFS, the study provides additional proof of the severity of Post-Exertional Malaise aka exercise intolerance.
• A Dutch trial using an RA drug for ME/CFS patients didn't show any significant improvement, but noting that certain inflammatory markers were high in ME/CFS patients might be helpful in future studies.
• A study of 16 people who described themselves as "recovered" from ME/CFS compared how they each defined recovery - interesting because one person might define recovery completely differently than another, especially after being very sick.

All interesting research, with some intriguing points for follow-up.

I am working to catch up on e-mails, Facebook, Twitter, etc, so please be patient with me. Hope you are enjoying this spring weather that has FINALLY arrived on the East coast (though it brought with it severe allergies for my son and I!).

Relaxing with a good book & a campfire

Another Diagnosis: Erythromelalgia

Like many of us, I already have an alphabet soup of diagnoses that seems to grow every year: ME/CFS kicked everything off almost 15 years ago. It causes Orthostatic Intolerance (OI), which for me includes both POTS and NMH. Plus I recently realized I still have Lyme disease which seems to flare up every few years.

Classic EM on toes & feet (mine is much milder)

Now, I can add one more to the list: Erythromelalgia or EM (yay, another acronym!) This started 3 years ago but was just diagnosed at the end of last winter. Because mine goes dormant in the warmer months, I have just begun to read and research EM, to learn more about it and how to treat it because it gets very painful at this time of year. EM is likely caused by/directly related to ME/CFS in my case, so it is possible that some of you may have it as well and quite likely if you do that it hasn't yet been diagnosed. It is considered a rare condition.

According to the Erythromelalgia Association:

"Erythromelalgia is a rare and frequently devastating disorder that typically affects the skin of the feet or hands, or both, and causes visible redness, intense heat and burning pain."

My EM began abruptly almost 3 years ago. It was the first week of December, the weather had turned cold, and my family made our annual trip to a local Christmas tree farm to cut down our tree. It was, as always, a pleasant time with my family, except that by the time I got home, my toes were burning with pain. I was desperate to tear off my warm socks and boots and was almost in tears. From that day on, the burning pain and redness in my toes continued until spring. The podiatrist guessed maybe it was a fungal infection, but the antifungal cream he prescribed did nothing. My primary care doctor had no idea what was wrong (is this sounding familiar?).

On my next visit to the dermatologist, I showed him my toes and described the pain. He said it sounded like chilblains. I told him someone else had suggested that, and I had looked it up, but my problem seemed to be the opposite. Apparently, with chilblains, cold temperatures make the condition flare and it feels better if you keep your feet warm. I had discovered, by trial and error, that heat made my feet worse. I explained to him that the only relief I got was from soaking my feet in cold water, which led him to conclude this was definitely not chilblains. He was also stumped, but - to his great credit - he didn't give up on me. He went off and did some research and called me back to his office.

He said he thought he'd figured out what I had: Erythromelalgia. He'd found information online on the Mayo Clinic's website, and he let me watch a video (at the link) about it on his tablet. He was right - it sounded exactly like what I had! Unfortunately, since it was a relatively rare condition, there didn't seem to be a lot of information on treatments. He prescribed a cream for me for the pain & burning feeling and advised me to use cold water soaks sparingly (and cool, not ice cold water) so as not to damage the skin. I limped (sometimes literally) through the rest of the cool season and breathed a sigh of relief when it disappeared again in the warmer months.

Two weeks ago, it began to flare up again - right on time as the outdoor temperature cooled. By the way, my seasonal fluctuations seem to be unusual; for most people, summer is worse, and the warm outdoor temperatures cause bad flare-ups of their EM. My theory, from what I've read and the photos I've seen, is that mine is milder, and it flares up when I start to wear shoes and socks in the cooler weather and switch from flip-flops to slippers indoors. This time when it started, I looked up erythromelalgia online and began to educate myself about the condition and its possible treatments.

For starters, my EM is almost certainly related to ME/CFS. ME/CFS causes autonomic nervous system dysfunction, which causes OI and can also lead to EM. Interestingly, I already take several medications for ME/CFS that are sometimes used for EM (beta blockers for OI/POTS and tricyclic antidepressants - low dose at bedtime - for correcting sleep dysfunction). Perhaps that is another reason why my EM seems milder than most and goes dormant for part of the year.

I was happy to find that there have been some studies on various treatments (though not many), and I eagerly read all that I could find on the subject and made a list of what might work for me. They divide EM into two categories: primary, which has a genetic marker, and secondary, which is caused by other conditions. I think with ME/CFS and its autonomic dysfunction, I fall squarely in the secondary camp (I also checked my genetic results and I don't have the marker). So, that somewhat limits my treatment options, but there are several things I'd like to try. My dermatologist doesn't feel qualified to treat EM - he'd never even heard of it before he dug it up for me! - but I have learned there are two potential doctors sort of nearby - one at Temple and one at Johns Hopkins - who might be able to treat it. So, that's my next step.

Besides digging up all the information I could find, I also joined two Facebook groups on erythromelalgia. I know from experience that nothing beats talking to other patients in the same situation about what has worked for them (that's where I found out about the two doctors in the area).

So, briefly, erythromelalgia symptoms often include:

• Burning pain and redness on extremities - often toes and feet, sometimes fingers and hands, and occasionally up the legs or arms, too. For some people, it also affects the face and ears.
• Some swelling and inflammation of affected extremities.
• Cold makes symptoms better; heat makes them worse - this is key and differentiates EM from many other possible diagnoses.

I miss my whimsical sock collection!

First-line of defense is simply keeping the affected extremities cool. For me, this means going barefoot or in flip-flops all the time in the house, keeping the house temperature cool (at least until my husband gets home in the evening!), sleeping with my bare feet outside of the covers, and occasionally - not too long or too often - using a brief cool water soak when the pain gets unbearable. It's not easy having cold feet all winter long, but it helps a lot! I am already missing my slippers and all my cute, colorful socks that I used to love wearing. Going out is tricky for me at the moment. Wearing loose slip-on canvas sneakers without socks seems to work best, if I really can't bear being out in flip-flops. Right now, my pinky toe is swollen, so even those hurt a lot.

If you think you, too, might have erythromelalgia (I'm getting better at saying & typing that!), here are some resources - information and groups - to help:

• National Organization for Rare Disorders (NORD) - information on erythromelalgia - a thorough summary of EM, plus an excellent list of related disorders that should be ruled out.
• The Erythromelalgia Association (TEA) - I was so excited to find out EM has an association! The website include basic info, links to more resources, membership info, plus a list of research studies.
• emedicine/Medscape overview on Erythromelalgia - an excellent and comprehensive explanation, with the best treatment summary I have seen, including a listing of all relevant past research that you can click through to for details. This is where I got most of the treatment ideas for myself.
• Mayo Clinic's Erythromelalgia Specialty Clinic - this is the page with the explanatory video that my doctor shared with me. This is the only EM clinic I have heard of so far. Just be aware that you should NOT seek help for ME/CFS at Mayo! They use the UK approach, which means only offering Graded Exercise Therapy and Cognitive Behavioral Therapy as "treatments" (which they are not and GET can actually be harmful). But, if I were in the area, I would definitely try the EM-specific clinic there.
• Facebook Group: Erythromelalgia - Medicines/Treatment, Information and Support
• Facebook Group: Erythromelalgia Support, Information and Awareness

So, I'm curious, does anyone else with ME/CFS or Lyme have EM or think they may have it? So far, in the two groups I joined, there seem to be quite a few EM patients who also have ME/CFS, POTS, or Lyme disease.

UPDATE February 2020:

Back in 2017, I successfully put my EM into remission using heat desensitization, a simple process of resetting your nervous system by gradually getting your affected parts (feet, hands, etc.) used to tolerating heat again. You can do this with hot water soaks, starting at about body temperature (98-99 F) and slowly and gradually working the temperature up (but no higher than 120 F or you can scald your skin). I explain more about my own process in Heat Desensitization - EM in Remission! and that post includes a link to the EM group where I learned about heat desensitization and many, many other people describe their own experiences. My own EM would flare up every winter; I have now been through my 5th winter with no EM, wearing warm socks, shoes and boots, and even sleeping with my feet under the covers!