EM destroyed my life and i think i am the only person from Spain that has it. I dont know any disease that is so painful as this one. I feel like i am burning alive, i am completely destroyed. Is EM really the most painful diaease that exist? I also read about CRPS. EM pain is the same as CRPS?(the burning one). Its horrible also to feel so alone. It has been 8 years for me. I am 24 now. I lost my young years. Sometimes i think not to continue and i have suicidal thoughts. Why live constantly suffering? Why other people are normal and i cant be? Is EM so rare or its misdiagnosted? Is EM the worst pain that you have ever experienced? Is EM the worst thing that ever heppened in your life? Are you also isolated like me?
I originally thought I had EM as well, but crps is on the McGill pain scale as the worst chronic pain disease you can have without it killing you outright. Crps was what I was finally officially diagnosed with. I’m now 23 but had been showing symptoms since 14, trust me when I say you’re not alone <3 I am unsure where Erythromelalgia ranks on the McGill pain scale unfortunately.
Sorry to hear your EM is so severe. Mine is not nearly as bad pain wise – EM has mostly prevented me from getting a goodnight’s sleep since I was a teenager. I can relate to your isolation issues and lost youth though – combined with my other health problems. My big health issues are EM, gluten ataxia (which I can’t seem to recover from despite staying away from gluten - so I’m dizzy, whacked out, and can’t focus), and Uhthoff’s phenomenon (can’t be exposed to the sun or I’m completely debilitated). I also have lots of other terrible things going on, such as being allergic to virtually everything (not exaggerating) and thallium heavy metal poisoning which no one will help me with, but these are the top three.
I can relate to your thoughts about questioning living if you’re constantly suffering. I’m sorry to hear you are suffering so much.
One thing that has helped me immensely with EM and sleep is getting a water cooled mattress cover. Maybe that would give you some relief. The one I use is Eight Sleep. Buy the extended warranty if you get it.
Some people have had a lot of luck with certain pharmaceuticals greatly improving their EM. You might need to do the research and present it to your doctor, but it could be worth looking into and trying. I’m not on any prescriptions, myself, so don’t have any expertise in this area.