To MLK But All Can read


I saw your post and I wanted to write to you. I am 58 and have an anorexia since the age of 12 but at different degrees of severity. I had 3 very very bad bouts the last being from 2008 - 2013. All through my life since about age 20, when I would drink hot tea my hands would get red but no burning or pain. It was because with AN as you know, you are cold all the time and the sudden ingestion of the hot liquid changed my body temperature. It was embarrassing but nothing more.

This last bout was a bad one and in August of 2012, my toes went numb - it was weird and no one could figure it out, The soles of my feet were blue all year so that was more like Raynauds. But then I got sicker and sicker and I could not retain anything I was eating - in retrospect that was also autonomic nerve dysfunction. My feet and lower legs started to burn on July 10, 2013 and they did not turn red until Feb of 2014 but they have not gotten worse and the EM has not spread but on July 15, 2013 I started serious recovery for the first time in my life. My EM doc hopes that as I improve my nutrition, I will get better. I am 605 days into the burning and I am weight restored (30 pounds gained) but i still have the burning but at least it is not worse than it was and it may be better - in fact yes it is better than it was the first few weeks.

How were you diagnosed with primary EM? I ask because I have been told by more than one doctor that the EM could be a result of the anorexia/eating disorder. As you know, eating disorders affect your body's ability to regulate its temperature. EM is a disorder where the body cannot regulate its temperature- it is an autonomic nerve disorder. The part of the brain which Walter Kaye has studied in terms of the neurologic changes that occur to the brain with anorexia is the hypothalamus- that it the part of the brain that is responsible for regulating body temperature.

They say that with anorexia we suffer changes to our brain - we don't produce necessary neurotransmitters and also the brain can shink. It is not known if the changes are permanent but it is likely that with restored nutrition the body can heal.

I was told by my EM specialist that my EM was likely the result of nutritional neuropathy. And I have to believe that there is truth to that and if I restore my health and really work on getting all the proper nutrients that I may be able to get the EM into remission.

I am writing this to give you hope and to help you stay positive. I don't mean to be preaching it is just I found it so interesting to see another person who had AN who has EM. An eating disorder specialist here in NY said that she has seen EM in the inpatient population at the hospital where she worked and that they have recovered.

Please post again if you would like to- we are here for you!


Hi Jordy,

Thank you so much for your comments.
A lot of what you say makes so much sense and I am so glad to hear from you :slight_smile:

I had anorexia from the age of 16 to 22 and have been struggling with bulimia for the last year and a half so while my weight is restored my nutrition definitely is not! Like you, I am now in the process of trying to recover :slight_smile:

When anorexic though, the same thing happened to me, I was always cold and when I warmed my hands up they would turn red- like you embarrassing but nothing more.

I received my doctors report yesterday and I have been diagnosed with possible primary erythromelalgia as nothing else seems to be wrong (blood tests etc are all fine)
Given that I don’t have anorexia anymore, I didnt really discuss it with the doctor but it is definitely something I will discuss at my next appointment.

Your message has given me a lot of hope that with time and consistently good nutrition things will improve :slight_smile:

It sounds like you are doing great in your recovery and I would love to hear how you are getting on :slight_smile:

Maria xx

My wife and I have also long looked into using nutrition to help EM, the latest book that I am reading on it that shows some promising ideas is "The Wahls Protocol"... a pretty interesting idea, though I am not finished the book yet. Let us know how it works!


Sorry for not replying earlier. Thank you for that recommendation, I will definitely look into that :) Let me know if you have any success with it:

I am searching for a naturopath at the moment as I know some people have had success in controlling symptoms that way.