Scrambler Therapy Update:

Because there is so little information out there about Scrambler Therapy treating Erythromelalgia, I am hesitant to put my experience out there while still in the midst of treatment, but I know many of you were eager to hear about my experience. Please keep in mind that this update is mid-treatment, and perspectives can change. I will be sure to edit/update this post in the future if that happens. But my experience has been quite positive so far.

I have had EM for well over a decade. It has gotten progressively worse over that time. I experience it in my hands, feet, and face. It is painful in my hands and feet and uncomfortable in my face. I am not always in a flare, but I flare multiple times a day even in an ideal cooled and controlled environment. The pain in the feet is the most debilitating. I have had to walk out of a store (even an air conditioned one) many times because my feet have become so hot and painful that I need to sit down and cannot bear to shop more or stand in line. I can flare from folding warm laundry for a few minutes, cleaning my house for a few minutes, and I’ll flare right before bed with the air conditioning blasting for no good reason.

I did try Bob’s Protocol for many months. However, I was not as strict with it as I should have been. I did take hot soaks nearly every night, but I would give into cooling techniques (turning the air on more than a normal person would) if I couldn’t fall asleep after. I am a supporter of Bob’s Protocol as one of the best available methods to try and improve EM. I believe there is an alignment between it and scrambler therapy in trying to desensitize and rewrite misfiring nerves. 

Okay, moving onto my experience with Scrambler Therapy. I have now had 5 sessions. I had the sessions 5 days in a row, and they were 45 minutes each. My provider was very kind, capable, and was trained by the creator of Scrambler Therapy. Her daughter’s CRPS was cured by Scrambler Therapy, and she made it her mission to get trained so that it could be offered in her state. I felt like I was in the best hands possible.

We primarily targeted my hands and my feet with heavy vibrations targeted towards these areas. We kept vibration minimal near my face to ease into that since face treatment is not FDA approved yet (even though most scrambler providers offer it and have had zero issues with it). The treatment is not painful. You may feel some light stinging / tiny electrical ant bites at first, and your provider will adjust the settings so that the feeling goes away. It mostly feels like light to heavy vibration depending on your settings. A funny feeling but not painful (and I am very sensitive). 

Did I see any change? Yes, absolutely yes. All week after treatment, I kept noticing how warm my face was. This is because the warmth in my hands and feet had been dialed down so much that suddenly the face warmth was my most noticeable EM symptom. This was quite the change. Usually my hands and feet sound the alarm bells first because they get painful so quickly. 

We turned off the air in our hotel, and it got up to 78 degrees in there (usually I’d have the air at 69/70 while relaxing, lower while sleeping or doing activity), and my feet were COLD. And my hands were comfortable, perhaps the slightest bit warm. And my face was uncomfortably warm but not horrible. We did crank the air to sleep, but not as much as usual, and I still heated up in my sleep like I normally do. 

I was also still experiencing flares with activities out of the hotel, like walking around a retail store. And being outside moving in the heat still felt very uncomfortable to me, but I wasn’t having a severe flare. It is important to note I also have POTS. Blood pools in my extremities, and I don’t believe this treatment will stop that. And POTS makes you quite heat intolerant. But plenty of people with POTS can walk around a store without unbearable pain in their feet. So hopefully this treatment can get me to discomfort instead of pain!

The treatment builds over time. A rare person might experience remission after a couple of sessions, but to my understanding, most people need about 10 sessions before the treatment sticks. Session one, results may fade after an hour, session two, they may last six hours, and so on. 

After one week of treatment, I can confidently say this absolutely moved the needle on my EM. I cannot say if the change will be permanent or if it will get me to full remission, but I am so glad I have gone down this road. 

I have another full week of treatment scheduled next week. And I will likely have more sessions after to target other pain issues like my Allodynia. 

I can’t believe how little information there is about this treatment in its relation to EM. I will certainly be getting the message out once I’ve had more treatments and a better understanding of my progress. 

I went to Mayo for my EM about 5 years ago. To my understanding, Mayo Clinic is the only place in the country with an EM Clinic AND they do actually offer Scrambler Therapy but for other conditions. They do not seem to know Scrambler can help EM? I will certainly reach out to them when I’m done with treatment…if only this had been a known option years ago…

Also tagging Calmare Therapy, since I believe that’s the official name / creator’s name.

Does anyone out there deal with very little sweating that puts them at constant risk of heat illness, and have you found any treatment that works?

I heard that Mayo Clinic could be an option. Shocked by how little doctors seem to be able to help. 😣

This freaking sucks. I’ve been to a few doctors(who’ve done nothing except this last one) and am getting an EMG in a few months, but I’m like 99% sure I have SFN and EM. I believe I had a very less severe case of it when I quit drinking originally back in 2024, and it mostly went away. But then the doctor put me on clonidine last year for anxiety and for whatever reason that fucked me up beyond belief.

I never had flushing or “attacks” before, my hands and feet would just get a little red, no swelling or severe pain. Like if I weren’t paying attention to it I would never know I had it, never felt anything, my hands would just get red. The clonidine made that shit WAY worse. Like went from no health issues at all to my EM flaring up anytime I go outside or exercise. I keep doing outdoor activities with friends and family and I can’t focus on anything with my hands and feet throbbing and burning.

Now my feet constantly bother me, even if it’s not a flare or attack it’s like they never stop spasming and my hands are fucked. The worst part is two months ago it was way better and I was starting to forget about it. They put me on gabenpentin a week ago and, it’s helping my pins and needles but now my flushing is way worse. So I guess I’ll have to quit that. Anyone have any advice or gotten better? I have been battling it for like 6 months hoping it’d get better but it hasn’t. I was running marathons last year, and now walking around for a bit gets me in pain. I went to the neurologist but all they did was give me Gabenpentin and schedule a EMG follow in fucking September.

I searched the subreddit for experiences with this therapy and was surprised to find not a single post mentioning it.

I have been experiencing EM flares and pain for well over a decade, and they have only gotten worse over time. This week I am beginning Scrambler Therapy (Calmare Therapy) to see if it can help me. I also am going to try and target my Allodynia pain with it.

Has anyone tried this therapy for their EM before?

*edit I supposed I should clarify what this therapy is for those who are not familiar. It is non-invasive and non-medicnal. Electrodes are placed in specific places on your body according to where your pain is, and they attempt to "scramble" your chronic nerve pain signals. I believe the therapy tries to capture "no pain" signals and imprint them over "pain" signals. It seems most helpful with and tested on CRPS

Anyone else have intermittent for years and then boom rapid progression in a few days? Here is my timeline..

2023

Intermittent red, burning face that lasts 20 minutes or so. Sometimes every day for a week, then could go a month with nothing. Thought it was anxiety.

March 2026

Right index finger red swollen, painful. Lasted a day. Didn't connect it. Thought I jammed it or something.

6/26/26

All 5 right toes. Lasted about a day.

6/27/26

Just the pinky and big toe in right foot

6/29/26

Multiple face episodes throughout the day

Today 6/30/26

Bottom of both feet. Feels like I have been walking on hot cement for a long period of time.

Ugh. Officially diagnosed yesterday. Waiting 4-5 days for compound pharmacy to fill the lido/amitriptylline/ketamine cream.

I am terrified that it will continue at this rate.

Can imagine many others have had this issue, finding appropriate daily trainers with EM has been difficult. Most modern trainers are simply too narrow and don’t accommodate EM flair ups.

Does anyone have any recommendations?

Please help. This came on so fast. I’ve had this underlying primary condition that no one can figure out that it left me bedbound for two years with systemic inflammation following two major infections that I had in 2024. It’s first affected my knees and then my SI joints and it just feels like I got ran over and I’ve been unable to be anywhere in my bed this month I begin to have the burning hot rash on my face came out of nowhere and now I cannot live without laying down with a fan on me at all times I feel like my head is in an oven and my face is burning off the heat radiating from me. It’s just so extreme to dermatologist agreed that it was em. but don’t have any experience treating it. I can’t take gabapentin or anything that affects serotonin due to me having serotonin syndrome in the past. I am in so much pain and suffering. I’m not a person and I just feel like my entire face is on fire. I don’t even know where to begin and I don’t even have my primary condition under control. No one believes me.

As a college student I’m out and about pretty often, meaning I get flare ups when I’m out of my apartment. I’ve found that the menthol roll on lidocaine stick by the brand Pickle Balm is very convenient and cooling for short term relief. I’m sure there are comparable products that aren’t brand name, but I got this one at CVS.

See my prior post for history, but I received a response from the dermatologist I found through TEA. Classic erythromelalgia. She is starting me on the compounded topical lido, ketamone, amitriptyline and followup in 6 weeks.

I’ve read multiple times that the burning should get better when elevated. The thing is mine gets worse when I lay in bed etc. If I get up to pee or anything, the burning gets better and then starts again when I lay in bed. I have had a few times where the burning started when I stood up, but it’s rare. Is this common with EM?

Another question:
It also only occurs after like 10pm and then until the morning. The doctors can’t really find out what is causing it. It started once in a while when I was around 21. Then when I was 23 it exploded and now it’s at least a few times a week all night long. When I read about it, it says that primary starts in childhood and secondary starts around age 40-50. I don’t fit either of those? I still don’t know it it’s primary or secondary 🫣

Edit to add!:

I also have different attacks, sometimes only in one foot. Sometimes it’s both. Sometimes it’s only in one spot of the foot. It always looks different.

Hi everyone,

I have been using Mexitil 200mg three times daily and also use lidocaine cream 5% mixed with diclofenac. This mix seems to work okay for me. Is there anything else you’ve tried that helps with typing all day? My hands can get very painful and swell some so it becomes difficult and I can only really think about the pain most of the time.