Hi, I just found this support site after recently being diagnosed. My symptoms started about 4 years ago, and it has been gradually getting worse since. It started in my feet, but now I experience pain and hot redness in my feet, hands, and sometimes it spreads to my legs and face. It has become increasingly difficult to manage, especially with the heat this summer. Flares have been happening constantly at different degrees of intensity lately. My doctors think it is connected to an autoimmune disease, according to blood tests, but we have yet to figure out what it is exactly. My main struggle has been with mental illness over the years, and now juggling Erythromelalgia and other autoimmune/physical symptoms has been a struggle.
I do get disability because of my mental health diagnosis, which I am grateful for because I couldn’t imagine how I would manage being on my feet working with this condition. I am anxious about my physical health and what having Erythromelalgia and Autoimmune will mean for my future, as I have always had the goal to improve my mental health enough to hold a full-time job and get off disability, since I am only in my 20’s. Having potentially debilitating physical illnesses has thrown me a curve ball though, so I am grappling with re-assessing my goals and priorities in life.
But all in all, I try to stay positive and stay grateful for the things I have and am still able to do. I am grateful I have found this support group, and I hope I can find some tips on how to better manage my symptoms, and I hope I can support others on their journey as well.
I too have had Erythromelalgia for several years. After trying topical solutions that Mayo recommends (they are worthless), I have gone to the oral medication route. I am presently taking Amitriptyline (70 mg once daily) and Pregabalin (175 mg twice daily). It is not perfect but life is bearable. I am presently at Pain Management trying sympathetic nerve blocks. I have also tried a Spinal Cord Stimulation; the results were not great but I will be trying a different vendor later in the year and I am optimistic.
I know some mental health diagnoses benefit from Amitriptyline and Pregabalin; maybe you could explore these for both of your diagnoses.
I too developed EM recently (1/24) and went through lots of bloodwork and hormone tests, just to find out they couldn’t give me a reason or cause. It really impacted my anxiety and put me in a bad way. Along with therapy for my anxiety, I found this site on facebook: Erythromelalgia, Fight Fire With Fire! Bobs Hot Water Protocol And More!
It gave me hope there was something I could try. I started the protocol mid March. It was a game changer for me. I was able to see improvement mainly at night. Prior to the protocol my feet would flare off and on, sometimes one foot, both or back and forth and also my hands would flare. After a couple weeks of the protocol it calmed the flares dramatically at night. It isn’t a cure or instant fix, but HUGE improvement and HOPE! It is opposite of many of the Mayo Clinic. The main thing is don’t use cooling methods. The approach and theory to the protocol is heat desensitization. I realize if you are dealing with other diagnoses that may have other forms of treatment that can help, but reading the comments in the facebook group, it seems this therapy can still help or aid in remission or at least lessening flares.
Thought it worth checking out as most doctors have no clue what to tell you except what Mayo clinic puts out. Best wishes in whatever you choose to do! There is life beyond this diagnosis.
I am sorry to hear that you are suffering from the symptoms of erythromelagia. I too have to deal with them for three years and they are awful. For me, the symptoms were managed with daily three doses of gabapentin (3x 200 mg) and one dose of ibuprofen (200 mg). Exercise really helps. It was difficult at first to exercise with burning hands and feet. I built up a pain tolerance gradually and maintain a regular workout routine nowadays. Now I can lead a somewhat normal lifestyle and do not let the symptoms ruin my life. I hope and pray that you will find your own way to deal with erythromelagia.