First thank you for all being so welcoming. I am sorry that I have blocked my emails and can't do "friending". This email address is also on my work smartphone and I can't get messages on it which are not work related.
But I appreciate coming here to learn more from you and hopefully to pass on anything I hear as well.
So the doctor who diagnosed me thinks my EM is secondary to my eating disorder. Has one here had an ED also and then developed EM? I have had "faux Raynauds"for most of my life. I say "faux" because I have blue hands and feet and that is from the poor circualtion from anorexia. I have been eating disordered all my life but I have really bad patches of restricting and getting to 80 pounds - this has happened like 6 times over the past 45 years so this is not a new condition. Obviously the An has caused other issues- osteoporosis and and bad teeth. But this last time I also crossed into menopause at the same time and that may have caused the worst results.
My feet went numb and I did have an EMG test (normal) and then I was also tested with nerve biopsies for small fiber neuropathy. This was negative also. I had ultrasounds of veins and arteries and they are fine. I am now left with the idea of EM
The doc last week thinks that my chronic LOW SODIUM has damaged my SODIUM VOLTAGE CHANNELS and hence the EM?
Has anyone told you that your sodium voltage channels are damaged? MY doc thinks that if I stabilize my sodium levels that the EM might go into remission. So she thinks this was "self induced" EM because of my poor diet.
Any ideas? Anyone else hear anything about EM and EDs or the low sodium issue???
I haven't had any such experience myself. I am so proud of you for taking this eating disorder by the horns after so much time dealing with it. I can only imagine how difficult it must be. I hope the doctor is right and when you get your sodium up it in turn fixes your EM. That would be such a blessing!. I would obviously try that course of action first and worse case scenario you are generally healthier even if it doesn't improve your EM. I hope that is all there is to it but if not I just wanted to share that some of us have EM with no known cause and all of our tests like you have had are normal too. If the diet improvement doesn't fix it just remember to get regular testing for other possible underlying conditions even repeats of those you have already had. Congratulations again on your achievements !
Thank you Alina and thanks for modertating this wonderful sight. It really helps to have support and a place to share with others who really understand!
How very brave you are to have beaten your eating disorder. I know how living with hard body dysmorphia can be..
Voltage-gated sodium channels play a pivotal role in pain transmission. Abnormal electrical firing, renders neurons hyperexcitable - thus pain. Having secondary EM there is a chance that EM may go into remission. Your specialist knows his stuff ;) Have you given me his/her name address?- It would really help others searching for a Dr and Diagnosis. I will add it to our database.
Keep moving forward and focus on getting healthy. There is a post with information for new members if you search it out. I also will send you some information . You are one strong lady. Inspirational !
Sending you positive energy.
I’m new here, reading everything I can, and saw your reference to a database of doctors. How do I access that? Trying to find someone who will actually work with me has been incredibly frustrating!
The Erythromelalgia Association has a physician directory. It can be found here: https://erythromelalgia.org/resources/physician-directory/
I developed EM as a secondary condition to Statin drugs. I became very ill from the statin meds and soon after I stopped the statins my hands started burning, mostly at night. Soon my hands and feet hurt and it has progressed up my arms and legs. I have flare ups, not sure what causes them. I find Marijuana cream helps with the pain.