My name is “Micki”, I’m 22, and I’ve tentatively diagnosed with erythromelalgia. Before all this, I was your average college student, I suppose. My social life mostly exists online, but I have a few friends in my classes from my major, Creative Writing. I love reading, and I would love to see “authored by” in front of my name someday, even if it’s on something as simple as a listicle website (i.e. Buzzfeed, Cracked, Clickhole, etc.). I’m also very into pop culture and history. Physically, I was never very active, in my childhood, I took dance lessons, and in my early teens, I often spent time dancing in my room to my favorite for up to 2 hours a day. This activity decreased later on, as I got bogged down by schoolwork in high school and college. At sixteen, I was diagnosed with ADHD-I, which explained many of my challenges in my first two years of high school. Once I was medicated, my grades improved rapidly. Still, I was often tired after fitting in homework assignments throughout breaks in the day and at home, so I became sedentary. As a side note, I also have been diagnosed as having an anxiety disorder, for which I was prescribed Prozac. I still have issues with suicidal ideation, particularly when faced with relative hardship for someone privileged enough to have familial TLC and no major health problems (for example, bad scores in high school and some of the more strict rules of being at Catholic school never hit too hard; poor grades for a semester or those general youth feeling of “no one understands, I may as well be invisible, no one likes me” led to darker places). In college, I was involved in something of an abusive friendship, which also caused my depression and suicidal thoughts to spike.We lived together until my breaking point; since then, I have lived with my parents. My relationship with them is very important to me - they are the main people in my life. I’ve never been in any romantic or sexual relationships - part of me realizes that this is because I recognize that I have to get in a better frame of mind before getting involved with another person on that level, but the other part can’t help but feel like a freak for being a 22 year old virgin. I mention all this tonset the stage: Last May, I was finishing up the spring semester online due to the COVID-19 outbreak, and I began to notice my feet hurt. A lot. My parents recommended I do more exercise, assuming I had sore joints. I then realized the main pain was in my toes and metatarsals, and that heat radiated off of them. The exercise continued and we experiment with using cold packs, and soaking them in warm or cold water until I could get a doctors appointment. When I did, my physician’s only observation was how cold the feet were (I had cold patches in my shoes) and that nerve damage might be the culprit. She also prescribed iron and B-12 supplements, thinking it may be a deficiency issue. We were referred to a podiatrist, who essentially dismissed it all, saying my feet “looked normal.” We decided to seek another opinion, and visit Penn Neurology. I was tentatively diagnosed with EM. The word was thrown around but we didn’t gey much explanation. My blood test at Penn showed a high platelet count, but we weren’t told what else that could mean. The general recommendation for my pain was lidocaine, which only seemed to add to the burning sensation, which had spread to the entire foot at this point. Visited a vascular expert, who could only tell us that no vascular disorder was apparent. I sent away a DNA sample to a genealogist so the diagnosis could be confirmed (we’re still waiting). This entire ordeal has been a strain on both my parents and myself. We’ve had to order a wheelchair, are searching for an outdoor ramp, and are waiting to see how long this immobility can’t beat before investing in a stair lift. I realize no parent wants to see their child in pain, and seeing what my mom and dad are going through. In a so-called normal situation (normal doesn’t really exist, especially in 2020), the relatively agile twentysomething would be helping their sixtysomething parents. We all test the limits of our strength simply to get me to the bathroom or down the stairs - the latter of which is reserved when I leave the house. We’re all on edge, and massive fights have become part of the norm despite our best efforts. Our upstairs isn’t wheelchair-friendly, so I have a commode in my room and am always either in a bucket (now with warmer water - thanks, Bob) or in my bed. Just like I’ve dealt with my past “demons,” I’ll defeat this one too. If EM is going to be part of life, I will find remission. Staying strong is difficult, but I have to believe in myself. I have a hematologist appointment this Friday, which will hopefully shed light in any direction. I’m 22, and my life can’t be over. I will take life by the hands and grab it. And one day, I will be able to run, kneel and do everything else I can to not only play with my cousins, but my future children.
Hi Micki! Mostly here to just offer some understanding/empathy/hope. I was dx’d with EM when I was 23, so around the same age as you. I absolutely understand the feeling of strain on relationships, as well as the frustration and sense of loss (regarding old life + mobility) EM brings. The thing is that EM can get better or we can at least learn to cope with it better. Your life absolutely is not over. I personally had really bad flares multiple times a day and couldn’t cook/stand for more than x amount of time/exercise/exist in temperatures above 70 or so without being in severe pain. When diagnosed, I was told it would get worse and was given a prescription for opiates 2x a day. (And omg, I also have really cold hands/feet to the point where several doctors have commented on it)
I am 26 now and can go about my day pretty normally. I also exercise pretty vigorously 4-5x a week now too, which is something I never would have even dreamed of a year ago. I still need a wheelchair for longer distances and flare a couple times daily, but it is mostly localized to my ears now (used to be mainly feet/hands), so more manageable. EM is very different for everyone, so what helped me might not help you, but I’ll throw it in here just as an aside.
(I personally had improvement after I saw a cardiologist. I was dx’d with POTs and prescribed thigh high compression stockings. This allowed me to start exercising… The combination of exercise + compression stockings has left me with much less frequent and much milder feet flares. I’m still kind of in shock about it. I use topical gabapentin for my ear flares. It kinda helps?)
Another thing you may want to look into is seeing a therapist who specializes in pain management techniques since EM pain can be really overwhelming! I saw one a while after I was diagnosed and it was helpful. I also found some solace in watching a lot of Youtube videos created by young disabled content creators or interacting with other disabled peers in person/online. Having EM can feel weird and alienating and being able to see other young people with similar struggles helped me feel more normal in my body. Honestly, I’m pretty at peace with my whole situation now. EM is dumb and it would be great if no one had it, but 
I admire your hope and positive outlook on your future. I hope you start feeling better, just like I have 
Hi “Micki”, you have had it very tough no doubt. I am a 23 year old guy who recently developed EM over a year ago ( started hands, now feet, now general intolerance to heat too). At 19, I was a national champ athlete, fantastic grades, very driven and confident in myself and my appearance. Like you, my last few years have been tough, multiple issues coming together at once, family problems, very bad skin issues (acne, never had a spot before 18), sport injuries which put my running on pause, anxiety/depression, and now EM on top of that. I honestly felt like I went from the perfect boy to a big mess. However, I think its very important to realise how young we are, life is most certainly not “over”. Everyone goes through difficult times (although their instagram posts do not show it), as I think, better to go through them early and learn whats most important in life rather than have it all a breeze and then find yourself lost as you get older. Its great that you are being proactive (as am I ), a few general tips I would give you:
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Stay proactive, get a journal, write down the type of daily life you would like and write down the obstacles to that life. Ask yourself, which obstacles can be overcome, how can I deal with them? What do I need to accept?
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Stop comparing, you probably look at others and wish you were them (as we all do sometimes). Its pointless to compare your life to others, first and foremost because you do not know enough about them, you do not see their difficulties (a good idea is to get off social media, keep whatsapp or someway of contacting friends but stay away from timelines, especially instagram).
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Forget the cult of your 20’s, again this is similar to the last point, do not buy into the idea that your 20’s have to be the greatest best thing in the world, and that if you miss out on them, life is over. Try to find meaning and purpose in your life now, how can you make this time productive? What are the positives? (As you said you love to read and write, you are spending a lot of time stuck inside because of circumstances, wouldn’t this be a great time to build on those skills?)
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Finally don’t give up, their is an opportunity for all of us to have an amazing and meaningful life. I believe we can get better, or at least find relief, but until then we have to keep pushing on. That amazing life you want, as a writer, maybe do some travelling, have a family? You can have all that, but you got to be patient, you might be dealing with difficulties for a few years, heck you might not get yourself together until your 30, but you know what, 30 is still very very young, you can do all the things you want then. Just keep the head up!
Hi Micki. As an 18 year old I understand how hard it is being young and dealing with an illness people constantly judge and can’t understand. First off I just want to say you WILL live the life you want. Nothing can stop you. I have had so many days of darkness and exhaustion with EM. But I have also had so many good days, days I only got to have because I stuck out the bad ones. Anyway, something that has helped me a lot is being my own cheerleader. Unfortunately doctors have never been as helpful as I have to myself with EM. If you want to take more charge over a treatment plan, I recommend really doing a lot of specific research. There are so many subtle connections in science that a doctor has never told me about before. Once you start to understand your own condition more you will feel more powerful/ can try different remedies out that no doctor is suggesting. I also want to send you hope right now, because I read your message and felt that I should let you know of your strength. You are amazing and this time of darkness is only temporary. Don’t feel bad about your parents and fighting at home. Ive been there so many times and at the end of the day you all love each other and would do the same exact things for them. Keeping you in my prayers !!!