As stated in the title, I write this post in hopes of getting in contact with Melissa Bogner. For people reading this, unsure of whom she is, she has written a few articles about Erythromelalgia. One of them is titled “What It’s Like Living With the ‘Fire’ of Erythromelalgia.” For those of you who have not read the article, I urge you to do so. I send it to everybody who is close to me, as I think it helps give them better understanding of my day to day life. the link to article is below.
The rest of this article would be for Melissa, if she ever gets the chance to read it.
The reason I have tried to reach out to you is because I am curious to hear about your life, more so than what I have been able to gather from reading your articles. In particular, I’d like to know your coping mechanisms, and your trial and error experiences, if you would be willing to share. I had read that you have been taking supplements on Dr. Cohen’s recommendation. I would be curious to hear what those are, and how they have been working for you. In reading your articles, it seems to me that you and I are in a similar “stage” of this condition. Your articles are suggestive that you suffer most in your hands and feet, and occasionally, you find your ears are affected. Me too. Another article you wrote about a “sunburned” foot, suggests to me that you have experienced a single flaring foot. Me too. I’m not all that familiar with how this site works messaging-wise, but feel free to send me a private message if that’s possible. I don’t want to jeopardize privacy. I look forward to hearing from you.
Thanks for reaching out. Living with EM is far more challenging than I ever imagined. I tried several of Dr. Cohen’s recommendations. None of them worked for me other than ALA and PC. The herbs and other supplements gave me undesirable side effects. I’m currently taking Lyrica, ALA, PC, Vitamin D, Elavil, Atenelol, and I drink aloe vera juice. The beta blocker appears to be helping shorten my flares. I get flares in my hands, feet, ears, lips, face, and sometimes my lower legs. The last two days have been horrible. At the same time I try to stay optimistic and I blog when I can. I’ve tried to turn my pain into advocacy to write about EM and others who are suffering with it. It’s hard to not feel like a loser at home because I am no longer able to cook or clean. It gives me horrible hand flares. It leave a lot of burden on my husband to pick up the pieces. It really stinks. I’m trying my best.
Thank you so much for replying, and sharing that information with me. I’m sorry to hear you’ve been in such a prolonged flare, and hope relief comes to you soon. If I may, I’d like to ask a few more questions.
I was wondering at what age your symptoms began. For me, the reddish hue started when I was 18. Pain started at around 24. While I can’t say for certain, I think it may have been from a car accident that, at the time, didn’t seem to affect my life. After the accident, my calfs had mild leg twitches, that seemed benign.
Were you ever in a possibly related accident, and/or do you have visible consistent leg twitches?
Also in what order was your body affected? Mine began in my hands at 18, and at age 25, my feet were greatly affected. you mentioned lips and face are affected for you. Did that happen to you sometime after the hands and feet?
And if i can ask, who officially diagnosed you?
do you ever find yourself to have heightened anxiety?
Are you as of now, still working?
I apologize for bombarding you with questions, and Id like to thank you in advance for investing your time in replying to me, as it really does mean a lot to be able to speak to someone with the same condition.