Wow…so proud if myself! I figured out how to post on the discussion thread :slight_smile: small pleasures…

Thank you to all of the warm welcomes!

First…I have not been diagnosed. I perused the internet looking for suggestions on how to deal with my very hot,red and swollen feet…not looking for a new disease! I never knew or even thought there could be a disorder or disease like this nor that I may have it! In one of the web pages I landed on there were several possibilities for what I am experiencing. Diabetes…last a1c said no but that was a few years ago.
Neuropathy…what I mostly gleaned from that is the feet “tingle…may feel numb…and has a sensation of feeling hot”. My feet do not tingle…are not numb…and this is NOT a sensation of feeling hot. THEY ARE HOT and red…and they swell seriously fast! I’ve been dealing with this for many years but it seems to be getting worse.

I was told by my cardiologist I have Raynauds symptoms. He seemed pretty certain. My Primary didn’t agree as I don’t “blanch” out. Well I do but it’s splotchy. I guess it wasn’t enough for her :slight_smile:

I had my thyroid removed in 2012 due to papillary thyroid carcinoma. Now I’m kept hyperthyroid to keep the cancer suppressed. Being hyperthyroid makes me extremely heat intolerant. Bad combo!

So in the summer months my feet are hot and uncomfortable…and in the cold months they are freezing and uncomfortable! Yikes! Sometimes it goes from one extreme to the other.

I am a balloon twister and professional entertainer. Mostly I work at company picnics and corporate events. Most of my work is outdoors! In fact I’m typing this while my husband is driving us to an event. It’s raining and will probably be in the mid fifties at this event :confused:

I need to get some info together and present it to my physician. I know many Drs hate it when we get on the internet. Too bad! I’m not trying to diagnose myself or find new disorders…just answers!

So what kinds of info should I take to her?

What kinds of questions should I ask her…other than…what type Dr should I see for this?

Should I try to get in to Mayo? Do I need a referral?

Thank you again!


Hello Patricia.

It sure sounds like EM and it isn't uncommon to have EM and Raynaud's. Congratulations on beating the cancer.

It must make the EM even worse having to be hyperthyroid.

I would suggest bringing official documents from research papers and those written by Physicians. There are many posts here with links to them and there are several to choose from. I would bring one describing what EM is and the possible treatment available. If there is a particular treatment you want to try then you can find research papers specifically on that treatment. You can just search a word or phrase in the search box and it will bring up all posts with that in it.

I know Mads has quite a bit of research and I am sure if you wrote her she would be happy to send you some that she suggests.

There are several types of doctors that can treat and diagnose EM but most doctors out there don't even know it exists.

Neurologists, Dermatologists, Pain specialists, Rheumatologists, Internal medicine.

I would start by taking pictures of your flares so they can see them if you don't flare in their office .It is helpful to keep a symptom diary of what causes them and what helps. A good doctor won't dismiss you because you are bringing this information to them even though you are getting it from the internet. With EM it is the only way to get it!

If you find your doctor doesn't take you seriously then just move on and see someone else. It takes finding the right one with an open mind sometimes. You don't want to see one of those doctors that think they know every thing and if they don't know about EM it must not exists! Don't let them call you crazy. Most of us have gone through that at some point.

I hope you work goes well and you don't flare too badly. It sounds like such a fun occupation!

take care,


Today’s gig was outdoors. It was about 58 degrees, rainy and windy. My husband and I worked side by side 4 hours. We finished at 4:30 and it’s now 10pm. It took this long to get warm…LOL…but my toes are now hot!

I love what I do but the weather is really taking a toll!

Hello again Patricia.

If you can't find the help you need here the mayo is a good option. That is where I finally got my diagnosis.

Yes you have to have a referral. Your doctor will fill out a request. My doctor submitted me to see a vascular specialist because he though I had some sort of vasculitus that the vascular doctors here couldn't diagnose and they refused me!!!! I was so low because I thought they were my last chance to figure out what was wrong! My doctor said they didn't believe I had vasculitis based on my records. He then resubmitted a request to see an internal medicine doctor of which I was approved. They say most people spend an average of 5 days there but I was there for a month so prepare yourself for the just in case long stay. I have so many other issues besides just EM too so I was seen by almost every kind of doctor and had almost every kind of tests. Just so you know DR Davis is the doctor there that sees patients for EM . After weeks of seeing everyone else it was a vascular/ Rheumatologist that thought I had EM and referred me to Dr Davis. I wish I could Remember his name but I am sorry I do not. If it comes down to it he is a Rheumatologists but he works in the vascular department and acts as kind of a bridge between the two.

It took me a few months from the beginning of the referral to actually getting to go.

I hope this helps and I hope they figure it out a little quicker and you aren't there for a month!

Take care,


My EM was missed by numerous rheumatologists & I was constantly told it was Reynauds. A new GP finally diagnosed me & a cardiologist confirmed. Turns out I have both Reynauds & EM…it is possible to have both.

Good luck getting a diagnosis but to be honest there is not much you can do once you have the diagnosis.

If there is little they can do…I am wondering what is the point of getting Dx? Just asking.

it is not only possible to have both but a great number of us do!
I know the road can be long and frustrating finding something that helps but there is help. Many people here have found meds that have lessened their symptoms and some have gone into remission. You will probably see more posts from those still finding the right thing that helps them because those that have found the right meds are effected less by it and less likely to be here posting. Although We Do Have Some Wonderful People Still Posting Although They Feel Better In An Attempt To Help others.
Just don’t give up and keep trying . There are many different treatments to try before throwing in the towel :slight_smile:
Take care

erin79 said:

My EM was missed by numerous rheumatologists & I was constantly told it was Reynauds. A new GP finally diagnosed me & a cardiologist confirmed. Turns out I have both Reynauds & EM…it is possible to have both.

Good luck getting a diagnosis but to be honest there is not much you can do once you have the diagnosis.

hi Patricia.
I know it looks daunting but there are meds that can help. It just takes a lot of trial and error for most of us. Some people do find something that helps right away.
It is also important to get a diagnosis and look for an underlying cause that could be treated or cured in turn fixing your EM .
Lastly it is important to get a diagnosis in the rare case it becomes disabling .If that should happen it is important to have medical records showing the issues it causes for disability purposes. I hope that is never the case for you if it isn’t already. I just believe in being prepared for anything.
Take care,

Patricia said:

If there is little they can do…I am wondering what is the point of getting Dx? Just asking.

I will pursue getting a Dx. As far as endocrine problems I am a thyroid cancer survivor. The main treatment for keeping it from returning is to keep us hyperthyroid. Being hyperthyroid has made me very heat intolerant. So it definitely fits in with the problems with EM. SIGH… As far as neuro problems…I don’t really know.

Hi Patricia..Welcome! Are you in Oregon?? If so, I am too. I was diagnosed by a neuromuscular doctor in Portland near St V's hospital. Would love to poss chat sometime!!