More Questions and Doctor Update

Hi All,

First I will tell you that the Rheumatologist I saw in January doesn't even treat EM and didn't know anyone else who did. But my dermatologist who takes my insurance - bonus- does treat EM (or said he knows what it is) so for the $15 co-pay I will see him on Thursday.

I am very ashamed that I am making such a deal about my foot pain when many many of you have it much worse. I think what is making me so nuts is that I still don't have a definitive diagnosis and I have the ED to deal with and I am struggling because I tried to recover to fix my feet but I am so discouraged that after almost 30 pounds it hasn't helped, I am questioning everything at this point.

I don't understand my life and the reason I have the ED is that it is a coping mechanism for stress and now I have stress from not knowing what to do about the pain and which doc to go see or if I even have EM? No one knows why this is happening. It could be the ED or not.

So I know none of you are docs but here is a good description of what my pain feels like - sorry if I have done this before but I am spinning here.

OK, the real problem are my TOES. when i first awaken they are stiff and they are blanched or blue and the soles of my feet are blue. As i start to move around - walk the dog get ready for work ( which means putting on shoes and walking outside- they start to hurt but it is only really after I get to work and have hot tea that they get red and fill with blood - the soles of my feet are not really that red or if they get red it is only the part by the toes which gets red. The office is usually cool but today it was like 82 in NYC so the office was warmer and the feet didn't let up all day. The pain is in the toes and then I have popping and shocking feelings also on the soles and in the toes.

I will post my photo again = it was taken after work and after the trip home when I had to sit on a heated bus- the heat from the baseboard got them flaring.

Does this sound like anyone elses symptoms??? I have been tested for small fiber neuropathy- negative, I am not diabetic, I don't have any autoimmune disorders. So everything is fine except what isn't here is the photo again. I am so sorry for asking the same questions again.

So does anyone else only have issues mostly in their toes? Also I am numb all over my body a little bit_ i was told that this was due to my eating through the nerve myelin sheath from starving myself.


Thank you,


Hi Jordy;

Hey, you don't need to apologize for complaining about your feet; this condition STINKS, plain and simple.. I'm new to this this myself, with no real idea why it's happening either, we're still in the process of testing, so I feel like I'm kind of in your boat, so to speak..

My toes are my biggest issue at present too, with some occasional body and malar rash, and tingling thrown in for good measure, so don't feel alone!

Hang in there!


Thanks so much everyone. I just start to freak out especially at night home alone worrying about the future and not understanding WHY this happened. I still have the ED so I am feeling upset and out of control for having gained so much weight and I did it because I really really thought at the time as I was told that this was what I had to do to fix my feet. It has been a rude and scary realization that my feet are NOT going to be fixed. But then again I have 3 doctors telling me that it is still nutritionally based and maybe a year from now if I stay stable, I will be better.

I just can't fathom any of this. Many, many , many thanks!


Hi Jordy. It sounds like EM to me especially the shocking type feeling that comes with the burning. For me that is the worst. It feels like electrified needles pricking me. If your ED is causing this due to nerve damage it is still possible that with more time and continued good nutrition it could improve your symptoms.

What I was told regarding nerve damage is if the nerves are damaged they can heal with time once the cause of the damage has been stopped. If the nerves are actually dead then they stay that way. I know you hear the I am not a doctor saying all of the time but I am not a doctor! HA! We should just have that be a blanket statement in bold writing at the top of the page!

I would ask you doctor about treatments known to treat nerve damage. There is still a chance it is caused by something else but it is a good place to start. Unfortunately some doctors don't like to look further into things when they have something so obvious to blame it on even without proof. It is possible to have an ED and something else. There are many people here with multiple health conditions. It is still important to get testing for all of the other possible causes.

I like what dkel9307 said. No matter the cause it is time for treatment. All EM treatment is trial and error so it's best to get started and not wait till you find out the actual cause. You may never find out.

You are strong. you can do whatever it takes. You already put on 30 pounds! Just keep it up.

Take care,