This is my first day on this site

I want to start by telling you a bit about me and my symptoms. I like others have had trouble finding doctors to understand what is wrong. I finally caught someone's attention because I took photos of my feet during flares and so she could SEE what I was talking about.

My EM is only on my feet at this point. Started 10 months ago but my feet went numb in August of 2012.

Did anyone have numbness BEFORE the burning started.

Do you have burning constantly or do you ever have periods when you are more like the symptoms of Raynauds? They think I may have both because my feet get blue also- in fact they started as blue when they were numb and now are constantly red and burning.

Any advice would be much appreciated. I am just at the start of my journey here. I would like as much information as you can share for my appointment with my neurologist and rheumatologist next week.

Many thanks to you all in advance!


Hi Jordy

I joined yesterday so I have very little advice to offer you. Some of my questions are the same as yours. Raynauds and then hot burning toes and feet.
Good luck to you.

Thank you both for posting these replies! Patricia is a "newbie" like me. How long have you have EM Tizzy? I am going to make another thread on this now that I feel more comfortable.



Hi Jordy516.

I started with extremely cold but not quite numb extremities that changed to a Raynaud's EM mix after a few months of the initial freezing. My hands and feet would be so cold 24/7 people would jerk away surprised if they shook my hand. I thought I was going o have to wear gloves with my swim suit as summer was quickly approaching.

Then one day they suddenly turned red and swollen and burned like crazy!. I have been through periods where it would burn 24/7 for a few months at a time but that was before I knew the temp around me was the culprit. I now keep my home in the low 60s and just cover whatever body parts are cold with a jacket or blanket and let the burning parts be exposed to the cold air . living this way I have been able to keep a lot of my flares away so I do get hours at a time of reprieve. As soon as I try and do more than 10-15 minutes of house work or have to leave my house to someplace warmer I have the flares again.

At night it is usually difficult because around 8 pm the low 60s is just not cold enough any more!!!

I like many people here walk the tight rope between EM and Raynaud's. I have a about a 5 degree window where I can usually scape them both!.

Like Tizzy said...prepare yourself for a gauntlet of tests for other possible causes or underlying conditions.

Take care,


Hi Tizzy,

What's the significance of low back pain? You've got me wondering since I had a lot of it in the months before my EM started.

Tizzy said:

Did you ever have any low back pain?

Me too, every few months for a week at a time. I believed it was due to my arthritis. Haven’t had it for ages.

Thanks Tizzy,

Yes it's so confusing. So maybe EM in a person's feet is sometimes to do with nerve problems in their back rather than their feet.

I'm going to give aspirin another go after reading what you were saying about it's benefits. Last time I had to come off my anti-inflam to try it, and went backwards. But with the current one, I can take both together.

I'm also giving magnesium a go which is making my feet tingle and twitch a bit.

Jordy…I haven’t been formally diagnosed with Raynoud’s but my cardiologist implied I have it. My feet are cold and purple in the winter. They never completely blanch out but they are blotchy. Then once they stop spasming and warm up they are red and purple and HOT. At this point the Raynauds is more painful for me than the EM. The EM is more uncomfortable for me right now. Oh…I joined 2 days ago. Also…If I stand for a moment or two I notice my thighs go numb. Not my feet.

I had a weird experience in February with a glass of wine. I’m not much of a drinker so I figured its because of that that I flushed instantly. I’ve never had it happen so fast and so red! It was just as I was introduced at a convention where I was teaching! I was overcome with embarrassment which I’m sure didn’t help! I honestly didn’t know what was going on at the time looking back I now wonder if it wasn’t EM!

About the numbness. I have numbness in the bottom of the feet. Always have had since I started EM. It doesn’t stop them hurting if I walk in bare feet on a piece or Lego for instance but they just have that dull, numb feeling, especially my big toes. The Neurologist said there is neuropathy but it is mild.
By the way, I have just switched to taking the coated aspirin which is supposed to be safer for the stomach and I agree a stomach protector is a good idea. Lansoprazole doesn’t agree with me so I am trying Pariet.

Just wanted to thank everyone who posted here. This is all very useful information for me!