Thursday, December 07, 2017

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 ($4.99 for e-book) 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.

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.


InvisiblyMe said...

Thank you so much for sending me the link to this Sue, it's a fantastic post and really quite eye-opening as I've only just discovered EM. I'll have to read into heat desensitization a little more and see whether this is something that could help in my case (with Raynaud's as well). I think what frustrates me more than the 'flares' with redness and itching is how unbearably cold I am all the time, though it's often with my arms and hands (which I think sends a message to my brain saying I'm freezing, when my core temp is probably rather high given how many layers I always have to wear). Not fun at all, as you know, so I'll be giving this a try. Thank you for writing this!
Caz x

Sue Jackson said...

Hi, Caz -

Glad you found this helpful! I was so surprised to see your blog post that you have EM, too! Sorry :(

My friend who put her Raynaud's into remission (hers was in both feet and hands/arms) is in the medical field (a vet) and didn't even know about the studies on heat desensitization for Raynaud's - she just figured it out for herself. She said she dressed in shorts and a short-sleeved shirt (don't know if that part is necessary!), went outside, and soaked both hands and feet in buckets of hot water. Did that each day, and it went into remission! Pretty much the same process as is used or EM by many patients. Definitely worth a try - it is such a relief to get rid of these painful conditions! Good luck - let me know how it goes!


tammy said...

Hi Sue! Your experience with EM is similar to mine. I get the first signs in the fall when I start using blankets. All summer when it's mild and I can sleep with just sheets,all my sores heal up. But now they are coming, starting on my big toes. The sores are what cause the pain. I get flaring in the summer from heat, but no sores. Do you have any advice for preventing or healing sores? Do you think the heat treatment would work for them?

Sue Jackson said...

Sorry for the delay in getting back to you - I had a couple of bad days this weekend.

I never really had sores - just red, burning pain in my toes & feet.

Yes, I would try heat desensitization - it seems to be the only thing that can actually cure EM. It works by "retraining" our nervous systems to respond normally to heat. As backward as it sounds since heat FEELS worse at the time, keeping our feet cold actually makes EM worse over time. Start with water about body temp & just soak for 5-10 min. Work up the temp a little at a time (never above 120 F) with 10 min soaks a few times a day. You should start to feel better in a day or two and then gradually improve until it clears up completely. Last winter, my EM started to flare up a bit again just 2-3 times - at the first sign of that burning feeling in a toe or two, I just did the hot water soaks again for a day or two & then it went into remission again.

Good luck! Let me know how it goes, Tammy!