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!