u/okayokayokay81

Update: I went to urgent care. The nurse practitioner said it's good I came in and that there was blood in my urine sample. She said between that and an increase in burning, the current antibiotic is not doing what it should be. She prescribed me a more widespread antibiotic and sent my urine off to be tested. She said I should start feeling considerably better by tomorrow at lunch so hopefully that's true.

This is my first UTI. Symptoms of urgency to pee and burning while peeing. I just took my 4th pill of 10 for the antibiotics and this morning the burning while peeing is worse than ever. Pretty intolerable feeling. Should I give it more time or go to the urgent care? No fever, blood, or vomiting.

Btw I was diagnosed and prescribed over telehealth because it was a Thursday late afternoon so my urine has not been tested at all yet.

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.

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