Hi, I was tormented by this condition from childhood, but when I read how awful this desease can be, I feel "bad" for the others here. I have this problem ONLY when I take shoes on my feet.. Then my feet get terribly hot and i feel unbearable pain, but when I take it off and cool my feet it is ok... Does anyone have the same type of problem?
No Sorry, My wife has terrible pain in her feet and legs from the knee down. Her legs also feel numb and frozen and hurt alot., sometimes to the point of her breaking down and crying. I feel so helpless as there is nothing that I can do. Her hands burn most of the time as well. I think different people have different symptons.
My symptoms are more like Gary's wife. It started as just a dull ache in my feet and has progressed over 3 years to the point where I'm limited in how much I can use my hands and feet everyday. I can usually walk or stand for 1-2 hours total all day and use my hands 4-5 hours. Never all at once I have to space my activity time and rest.
No, although for you I bet it’s really painful to you… But don’t take offence but I kind of wish mines was like yours!. I have EM pretty much constant rather than flare ups in my feet and lower leg, got EM in my hands and face and all this increases in pain and burning ever year. I get extreme swelling in my legs and feet up to 5x the norm size sometimes… plus I have nerve damage in my feet and hands which recently took a turn for the worse and made me paralysed and I had to re-train to walk again… So I blame EM for that too. Really hope (although I wish nobody had it at all) that yours doesn’t progress any!
I have not been formally diagnosed, but doctors suspect that I have both EM and Raynaud's. I go almost into remission when the weather is not in either extreme (highs not above 70, lows not under 55), but during winter and summer my symptoms are similar to what you describe. My toes can be pretty much normal if I'm relaxing in a climate-controlled space, but the burning pain can be triggered by activity, shoes, and time of day (much more sensitive to flares at night). And my toes get icy cold easily too, hence the suspicion of this in conjunction with Raynaud's. I'm constantly struggling to get them to stay a medium temp! Blanket on, blanket off, feet elevated, fan on, fan off... yeah, you get the idea.
I didn't have EM until about 8 years ago at age 49. It came on gradually and kept getting worse. I got it under control by being very strict with my diet. I do best with being gluten free vegan. If I am not careful and accidentally have eggs I get a very severe EM flare the next day (within 20 hours). I can't have spices ,msg or other artificial ingr. without flaring afterwards. My feet can't get overheated or I have a hard time cooling them down. My fingers get red & very painful after drinking bottled water with "added minerals" in it. My system must be very sensitive. I am finding more out about my EM being related to my digestive system. Has anyone else come across any info on this?
I’ve had EM for 7years. Mine also came on gradually. I’ve discovered that diet really can cause an EM flare. This June I went wheat free and my feet improved and so did my arthritis and neuropathy. I can walk without pain. I’ve found that tomatoes and chocolate cause mini flares. My feet aren’t swollen. Still wearing my birks most of the time. I’m not as strict with the diet, I’m getting a feel for what I can eat. It’s kind of amazing that diet can have such an affect on EM. My feet still don’t like heat or being down for long periods.
I agree, tho my diet seems to have to be low sodium. Salt causes my feet to swell and burn.
Sharonlee said:
I've had EM for 7years. Mine also came on gradually. I've discovered that diet really can cause an EM flare. This June I went wheat free and my feet improved and so did my arthritis and neuropathy. I can walk without pain. I've found that tomatoes and chocolate cause mini flares. My feet aren't swollen. Still wearing my birks most of the time. I'm not as strict with the diet, I'm getting a feel for what I can eat. It's kind of amazing that diet can have such an affect on EM. My feet still don't like heat or being down for long periods.
I stay away from salt too because I have seen my feet get swolen , red & very painful after eating something with salt listed in the ingr. That's why I do best cooking from scratch so I don't add any salt. Check out the Gerson Therapy.
I have always wanted to get berkenstocks but ended up with soft, arch suppoeted nikes instead. I haven't worn regular closed toed shoes in years (even in the winter) except for when I have to be on stage with my chorus. Then I put on my sandals right afterwards. Sometimes people comment on how cold my hands (& toes) are and I tell them that I prefer it that way.
hi, i don't wear shoes any more because of that pain. i wear flip flops all year round, even in the snow i wear them. put if the temperature is 15 or 20 degrees i will wear these sneakers that are breathable, they have little holes in them. i think Nike makes them. good luck and peace be with you.
Thank you all for your comments. I also have to say, that i have noticed some connection with my diet and flares, but i am not able to tell what is the problem in my food.. i just got to know that if i dont eat at all, it gets a little better and bearable.. I will try some of the diets mentioned above and share results.
Dear karenatl, thank you very much for this information about your diet.. I had suspicions, that my condion is worsened by diet for a long time. I will try the diet you mentioned!
karenatl said:
I didn't have EM until about 8 years ago at age 49. It came on gradually and kept getting worse. I got it under control by being very strict with my diet. I do best with being gluten free vegan. If I am not careful and accidentally have eggs I get a very severe EM flare the next day (within 20 hours). I can't have spices ,msg or other artificial ingr. without flaring afterwards. My feet can't get overheated or I have a hard time cooling them down. My fingers get red & very painful after drinking bottled water with "added minerals" in it. My system must be very sensitive. I am finding more out about my EM being related to my digestive system. Has anyone else come across any info on this?
It might be good for you to keep a food journal. Sometimes we forget what we eat and then can't figure out what caused a flare. At one time I had a form (2 pages) with the hours listed on each line. Devide the paper in half vertically. In the left collum jot down what you eat. On the right, how you feel and any psyical pain or discomfort. This will help you to be more aware of what might be causeing flares and how long after you ate the food.
I hope this helps you pawelltg
My symptoms are pretty similar and a similar story to Libby. I can have a period of icy cold feet even through thick socks and then have a period of very hot feet, particularly red the underside of the feet, a bit on top and some swelling. It seems to be getting worse at night, but some days it can be painful in the day too. I can't always identify a trigger but I've found wearing socks can sometimes trigger it. I get pain, tingling, numbness, redness. I tried Athlete's foot creams just in case and that hasn't worked. I've had a Dopler Test and my circulation was at the lower end of normal.
I can't remember when the symptoms appeared - only about a year or so I think. I was on antidepressants and came off them and the condition appeared, so I don't know if there's a connection or not. I'm describing it as if there is one but I really don't know. My doctor asked if my shoes were too tight, but they weren't, but just in case I went out and bought looser ones and that hasn't helped.
I'm wondering about the connection with diet now as this has been spoken of and someone saying that eggs trigger it off. I had a lot of pain last night and had 2 eggs in the daytime. It's a case of watching your diet I suppose.
I did have these symptoms on my face when I was having a complete mental breakdown in my early twenties and it was very painful and unsightly on my face. Very red and hurt to go out in the cold. Thankfully it hasn't appeared on my face since.
I've only just discovered this information about this condition. I can't think what else it could be as I know I don't have diabetes, having been tested for it. I'm going to give it a bit longer and go back to the doctor, although as the symptoms come and go, I'm worried that my feet won't hurt or be red when I go. They like to see the condtion in it's active stage don't they or they won't believe you.
I'm so sorry you all have these symptoms/this condtion too. It's a nasty thing to have.
It's great that there's support and tips here for coping with it.
Thank you very much for the advice, i will try your method and then I will post some resultes if any come up...:-)
karenatl said:
It might be good for you to keep a food journal. Sometimes we forget what we eat and then can't figure out what caused a flare. At one time I had a form (2 pages) with the hours listed on each line. Devide the paper in half vertically. In the left collum jot down what you eat. On the right, how you feel and any psyical pain or discomfort. This will help you to be more aware of what might be causeing flares and how long after you ate the food.
I hope this helps you pawelltg
Hello Karenatl, i dont want to be too optimistic, but my symptoms got much better when i am on glutenfree diet as you mentioned. I will be keeping my food journal and share results for others. But i want to thank you for this advice, as it seems that my problem was connected to gluten. Now I can spend my day in shoes (little discomfort though) and walk like healthy people throughout the day!
karenatl said:
It might be good for you to keep a food journal. Sometimes we forget what we eat and then can't figure out what caused a flare. At one time I had a form (2 pages) with the hours listed on each line. Devide the paper in half vertically. In the left collum jot down what you eat. On the right, how you feel and any psyical pain or discomfort. This will help you to be more aware of what might be causeing flares and how long after you ate the food.
I hope this helps you pawelltg
I am so glad to hear that! Soon you will know which foods to stay away from. Everyone's body is different and reacts to foods in different ways so it's good to know what your's does. Let me know any more progress.