This is my first time posting on the discussion board so excuse me if I am unsure of what to do. :) I am an 18 year old college student. I believe I have been suffering from EM for about 6 years. My feet turn red, they swell, and they put off heat whenever I am walking or even standing. It doesn't matter where I am. I could be in my house or outside. I don't wear flip-flops because I hate when people ask me what is wrong with my feet. My hands are also victims. I must keep them crossed or holding something when I'm standing or they will swell as well. I've been to many doctors, but they only wanted to treat me for Raynauds. I believe I have that as well because my feet and hands turn purple and cold when I am sitting on my bed or anywhere flat. I have read online various medications to try and various diets to try. I've also read that what works for one person may not work for another. But I thought I could ask for a little advice. I recently emailed TEA about a doctor in Alabama who knew what they were doing. Luckily, I got a response back and I'm hoping to make an appointment soon. However, you know how doctors offices can be. It may be the spring time before they can see me! So I would love to learn more about possible diets or herbal products? Anything you find that helps alleviate your symptoms!
Hi. For me, lowering my sodium has helped with the swelling of my hands and feet at night. I try to cook my own meals from scratch rather then buying anything frozen that has already been prepared. I stay away from canned foods and veggies and stick to fresh or frozen veggies. My neuroligist also suggested One a Day vitamins and I take gabapentin(neurontin) and one Aleeve(asprin) a day. At your age I don't know if asprin is good to take every day. Even with herbal products you should still try to get a hold of your doctor, even if its just over the phone, and get his opinion. Good luck,
Dan
I'm sorry to hear you've had this for so long at such a young age. It must be very challenging for you.
I also try natural "ways" when I can. But honestly, I haven't read of too many people having success with EM without some meds. Aspirin, (Not Aleve) can help but probably not good for you to start that on your own. I use Amitriptyline with success, others use Neurontin, Cymbalta.....the list goes on and on. I'm sure lowering sodium is a safe thing to try for anyone.
I highly recommend you wait until you see the Dr. before you self medicate or treat yourself. Glad there's someone nearby who knows about EM. He/She should first send you for lots of blood tests to rule out any other conditions. If not, ask for it and consider another Dr.!
This site is a great source of support and information, so keep us posted on how you're doing!
Lynn
Hi, i am also 18 
I have been diagnosed for 6 years.
Not everyone is eased by changing there diet or flares are caused by there diet, as mine aren’t. My EM is constant rather than flares though but diet changes do nothing to change my pain but it can with others I’m on meds for EM so I don’t know for sure what natural ways work personally but I know from other sites that people have said the following have reduced there flares a good bit-
Magnesium
Vitamin B, E and D
Evening primrose oil
Feverfew
The above some take as a ‘natural supplement coctail’. From what NiceGuyDanny said above, yes you can take aspirin daily… I don’t take it anymore as it did nothing for me though as young as 12 I was on 300mg 2+ daily (though youd need to get a doctor opinion but i was fine on it) I see a neurologist for my EM who also diagnosed it too and also diagnosed my nerve damage I didn’t know I had as well. Your very lucky to still be able to do studys and college, keep it up for as long as you can!! Treasure it (I had to give up school at 15 I never got to finish it or do any exams due to my EM I have no qualifications at all) Anyway, hope this helps you :), good luck!!
My heart goes out to you! You have much to deal with at such a young age.
As it turns out, my EM is related to Autonomic Neuropathy, including postural orthostatic tachycardia (POTS) and anhidrosis (inability to sweat at all or enough). Treating this with Mestinon has me sweating again, and has done wonders for my feet. Also, in my case, I am supposed to eat MORE salt to increase my blood volume and help with circulation. I also take two baby aspirin twice a day.
The hard thing with EM is that it can be caused by many other things and it's hard to treat when the cause is unknown. From what I've read, the genetic form is even more difficult to treat.I was so very fortunate to find a doctor at Johns Hopkins who, though he had no experience with EM, was able to diagnose the autonomic issues and suspected that they were causing the EM.
My feet still burn at night a couple of nights a week, but usually not until around 8pm. I still wear sandals, though sometimes wear socks with them while outside in the cold. I still wake up with swollen hands and feet each morning. But throughout the day my feet rarely burn and feel so much better that I hardly notice them.
I EAT A BANANA EVERY DAY....It has lots of MAGNESIUM and I take a Bath with HERBAL BATH SALT and Herbal FOAM
IT RELIEVES ME FOR A WHILE
GOOD LUCK FROM JAN
Thanks everyone! I think I’m lucky. I have some nights where my feet burn but I suffer throughout the day. My mom just mentioned the bananas as well so I’ll be trying that. My main problem is walking and standing in a shower because my feet really feel on fire and the skin really itches and tingles but if I elevate them it will disappear after some time. I have Raynauds too so a fan usually causes pain too. I have been on calcium blockers but they dropped my blood pressure. another problem has just come up. Does anyone else have achey feet all day? My feet hurt today, like a deep hurt. I’m not sure why or if it is related.
I SIT ON MY KNEES WHEN I TAKE A SHOWER......TRY.....GOOD LUCK FROM JAN PETER IN BELGIUM...
My EM/nerve damage paralysed me earlier this year so I have been wheelchair bound always… But before this happened I could barely walk or walk far so was in a wheelchair on outings when things where for long periods of time or I was having a real bad day. As someone the same age as you I know exactly how you are feeling and us being teens we are very image contious and feel the need to look like everyone else and ‘fit in’ Me having to be in a wheelchair the decision was reaaaally tough! As I was ‘down there’ and everyone was ‘up there’ but now. I don’t mind so much cause I think ‘haha, everyone’s legs are sore with walking and I have this :)’ plus when you actually speak to others they all say ‘wish I could get a wheelchair’ lol!.
In regards to the shower, I had a bath seat before which I got from ‘independant living’ I get it through an occupational therapist (UK name) which was a seat like bench I clipped on to the bath and it could be clipped on and took off again. I also got a little stool for my feet so they where out the way and staying dry. Now I got a disabled shower fitted into my home that can fit in a shower chair in and out of and my little stool for my feet. I take the shower hose off and wash like that- my feet get a little sprayed but not loads.
Around the house I use a desk fan, which I sit on the floor beside my feet- my fan is my best friend!. Do you use a fan? That’s what a lot of EM’ers use!. There’s also a thing called MagiCool you might benefit from for carrying around with you, it’s a tin spray (Amazon, EBay, supermarkets sell it) it’s very good especially added with a fan. You spray as much of it on as you want and you feel a coolness and it has got moisturising stuff in it too so I doesn’t dry the skin or cause damage like cold water rinsing does! Again, hope this help :)!!.
Regarding diet, I have had some success recently by finally identifying and eliminating or dramatically reducing a variety of foods and chemicals that were triggering EM and related severe fatigue symptoms.
I put together this document that indicates what those foods, chemicals and other substances are. Also, at the top is a link to a (2007) interview of Dr. Stephen Waxman where he goes into some detail about how EM affects 3 different types of pain reception in our bodies.
https://docs.google.com/file/d/0Byc-c2wCiBZFLVl6ejZPWGlfams/edit
The most important thing is that you have to listen to your body and find out what triggers your symptoms, because EM can be so variable. For dietary things, I kept a diary of the foods I ate and how I felt after (30 minutes, 2 hours, 6 hours, etc.)
Good luck!
I had to take baths for a very long time with my feet out of the tub because the warm water was too much for my feet to handle..it was a pain and hard to get in and out, but it got the job done. I later switched to a shower chair (I use it now) and keep my feet up trying to keep them out of the water. I hope you find relief soon!
Thanks for all the advice! I’ll start a food journal to see if that helps. I can’t use a fan because of Raynauds. My feet and hands are either burning or freezin Hard to find a perfect medium.
Yeah I know what you mean there is no ‘normal’ with feet. I have suspected Raynauds at the moment getting it looked into as on other sites everyone who has EM and raynauds definetly think it looks like I have it but luckily I can still use a fan to a certain extent as my raynauds usually comes with EM too and it’s the worst ‘flare’! I’d rather have EM than both at same time.
I'm not sure what to do about the shower because I actually live on campus in the dorms so we all share a bathroom. (the biggest down side to college) We don't have a handi-capped shower, and I'm not sure why! So there's no option besides a standing shower.
I'm not sure what to do about the shower because I actually live on campus in the dorms so we all share a bathroom. (the biggest down side to college) We don't have a handi-capped shower, and I'm not sure why! So there's no option besides a standing shower.
On the shower issue......I take a rubber made container about 7" tall and fill it with cold water to the brim. 58 degree water is best. Then take a shower with my feet in the rubber made container. Quick shower and it works quite well. I know you are not to cool your feet in cold water, but for a shower, I make the one exception. For a diet....Red wine seems to trigger almost all of us. I do know of one boy that a non acid diet relieved him of the symptoms. I am so sorry. To cool my feel on a regular basis I use a portable air conditioner. In fact as I type my feet are in front of that wonderful machine that is cooling my feet.
If you have just been diagnoised I would recommend Prednasone. Many have had the symtoms go away with the high prednason for 6 weeks. However, that must be done within 7 months of having EM. Jim
While your suggestion about the container sounds perfect, I can't put my feet in cold water as I have Raynauds. It would aggravate it and I would have two flare ups which are not good. But thank you so much for the advice. I believe I've had Raynauds and EM since I was 12 (I'm now 18) However, no one ever took me seriously until now. My GD mentioned EM back in February when I saw him about my feet and rapid weight loss. My cold toes and numbness spelled out Raynauds but my hot, swollen feet and hands said EM. But he didn't know anything about it, told me to research it and move on. However, I cannot move on if I can hardly walk!
Raynauds and EM are very common to come together. I have a touch of raynauds but it is only on my finger tips and not much of an issue most of the time. The EM on my feet is continuous. I love to drive with the AC on my feet. I can be the driver or the passenger, does not matter. But a person can't spend their life driving. Hummmmm! I was in a wheelchair but advanced out of it. My daughter (just a little older than you) got me to bed on time every night. Getting the right amount of sleep is wonderful. It makes everything better. I went 3 months with 0-2 hours sleep each night. I didn't know the body could handle that. Netflix is wonderful. I don't know if prednasone would help you or not. The negatives of taking it are so negetive, but EM is so bad you might want to consider it. Jim
I do have to turn the AC on my feet, especially if I have been walking a long time! I will mention that medicine to my doctor when I go see him. Thank you!
My feet ache constantly. I don't know if its the EM or something else. I can barely walk or stand 5-10 minutes.
hlhlain94 said:
Thanks everyone! I think I'm lucky. I have some nights where my feet burn but I suffer throughout the day. My mom just mentioned the bananas as well so I'll be trying that. My main problem is walking and standing in a shower because my feet really feel on fire and the skin really itches and tingles but if I elevate them it will disappear after some time. I have Raynauds too so a fan usually causes pain too. I have been on calcium blockers but they dropped my blood pressure. another problem has just come up. Does anyone else have achey feet all day? My feet hurt today, like a deep hurt. I'm not sure why or if it is related.