Hi everyone,
I’m new to this forum. I’ve tried to read everything I could before I posted anything. I’ve learned a lot from many of your detailed posts-some of it sort of frightening, I have to admit, some of it confusing, especially when it comes to the medical details, and a lot of it encouraging as well. I believe I’ve had EM since my early teens and I’m sure my mom also has it. It started with flare ups in both feet that would subside when I rolled my feet back and forth on aluminum cans from the refrigerator. It wasn’t until about the past 2 years that I realized my feet were flaring more of the time than not. The weird thing is that the flaring has no rhyme or reason. My flares can be both feet, only one foot or the other or even just my first 2 toes on each foot or the last 3 toes on each foot. I’ve had my knees, face and tips of ears flare as well, but rarely in comparison. I’ve got Raynauds in my fingers as many of you do as well. I’m afraid of how badly things might get with the EM if it continues to progress. And I feel guilty even saying that because I know what I am dealing with at this point is not much compared to what many of you have experienced with EM. A question I haven’t seen addressed: Is it going to get progressively worse? Thanks, I’m happy to be here in such good company!
Pleased you are here. First of all don’t think that just because what happened to someone is going to happen to you I am thinking of you saying that some of the posts were frightening.
The way EM affects each person is different so what happens to one person might not happen to another a bit like the way we respond to drugs differently.
As for whether it will get progressively worse the simple answer is not necessarily. In my case mine is far better since the cause of it was found and I think that can apply a lot. If they treat the cause then the symptoms won’t be as bad. Hope this helps.
Yes, it does help. Thank you! There are so many diseases whose symptoms, diagnosis, and treatments are textbook perfect. EM is the opposite. The symptoms for everyone are similar, but can be quite different from person to person. The diagnosis seems difficult to impossible for doctors to come to. And the treatments/meds vary so much that it’s hard to know which path to take. I had to research my own condition and bring the info to my doctor. Even though she agrees that it is EM, she has not ordered any blood tests or suggested any course of treatment. So I am reading everything I can on this blog and anywhere else to bring her more info and suggest my own ‘next step.’ I was able to see from your list of docs that there is a doctor in my medical plan several hours drive from me who is familiar with EM. I’ll try and see if they’ll let me go ‘out of the area’ to see him or at least suggest to my own MD that she consult with him. I’m quite sure my maternal grandmother was diagnosed with polycythemia, so I may have inherited it. So happy to have a place to learn about EM and to have all of your valuable experience to draw from. Thank you so much to those of you who have shared so much. It does help us newbies 
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If you’ve had it since your teens and are now 59 (according to your profile), that’s a long time to have the condition. How has it progressed for you thus far? If progression has been slow the past 40 years, I think it’s reasonable to assume progression will remain slow.
Yes, my EM seemed to stay the same for years-bright red and hot feet-always both of them, usually after being on them for an extended period of time or when it was very hot outside. But in the past couple of years it suddenly changed to where I have many flarings every day and I always have flaring in the evenings. Being warm in general or in a hurry will be a trigger, taking a shower for sure, any kind of textured material on my feet all cause flaring. I’m also being awakened at night 1-2 times because of the heat in my feet. It is not always bilateral anymore either. One foot or the other, or sometimes only part of both feet will flare. I was always cold until about 2 years ago as well. Now I’m basically warm all the time. My best relief comes from stepping on the tiles in my home. They are especially cold in the winter, which feels wonderful. I’ve just experienced such a drastic change in symptoms in the past couple of years that I’m wondering what will happen next. I keep hoping it will revert back to the way it was 
A suggestion I have is to be sure to rule out a vitamin B12 or D deficiency. Should be in upper half of the range or you may be becoming deficient.
kimr,
Morning! Stay encouraged. Your symptoms and timeline are very similar to mine. I have not let up in researching and talking with my neurologist. I have never had to take medication before now, but learned very quickly this is a trial be error and different treatments work for different people. I’m very active, eat well and fortunate this is not secondary to another disease. I’m hopeful you can find a neurologist that will listen and is open minded to various treatments. Stay as positive as you can, first and foremost. I find the more I dwell on it, the worse it gets. I have lots of research material I can share with you. Feel free to private message me and I can upload it for you. I currently take Propanolol 20 mg BID (morning and lunch) which helps with a lot of the “tingling” I get in my hands and feet. I take 225mg of VenlafaxineXR at lunch and just recently started Namenda 10mg BID. Thanks to Dr. Cohen, I tried Butterbur and Feverfew, which both helped with the flares. If you are not on any medications, you might try those two herbs as they seemed to really help me. I am not flare free by any stretch, but my quality of life has improved drastically. If I can help you in anyway, please don’t hesitate to ask. I spend lots of time outside b/c my son plays baseball, so finding a solution was imperative for me. Hang in there! Keep the faith, this will get better. Be careful reading the horror stories. Worrying about what could happen only makes things worse. Thanks for sharing your story and I truly wish you the best!!
Thank you-I am writing all of these great suggestions down to bring to my doc! I haven’t had those blood values tested. But I did read somewhere on this site about the B12 & D, so started taking both about 3 weeks ago. Haven’t noticed any difference in how I feel, but am committed to taking them anyway.
Hi! And thanks so much for the offer of sending some research info-I’ll gladly accept it. I went to see my doc yesterday. I brought her all of the info I had and she surprised me by saying that I was her 2nd patient with EM. I was encouraged that she knew what it was and had some experience with treating EM. I’d had some blood drawn for something else recently so she looked at that profile and said everything was normal. She offered some prescription topical gel to put on my feet. It’s being sent in the mai, so haven’t tried it yet, but haven’t heard of anyone else using a topical gel. I don’t know if she’ll be as helpful as I thought. I’d like to know more about the herbs you mentioned. Can you tell me the mg you tried with success? And I know what you mean about keeping your mind free from thinking the worst. I never got woke up from my feet flaring until I read about it. Well, I hope you’re having some great flare free or low flare days!
Hey Kimr,
So sorry for the delay in getting back to you! I’ll upload some articles tomorrow for you while at work.
As far as the herbs, I take 50mg of Butterbur 3 x day. The brand I use is Enzymatic Therapy. It’s also called Petadolex Pro Active. It’s used for everyday maintenance of migraines which is a very similar science to EM.
The other herb I take is Feverfew and I take it 3 x day. 380mg tab. The brand issue it Natures Way. Bother found at Natural Foods or most likely in any health food store or Amazon.
I would be patient with it as it took. E about 4-6 weeks to see the improvement. However if I go more than 2 days without the Butterbut, I know it!
Keep on keeping on! Don’t ever hesitate to reach out if I can help in anyway.
Bootcamper