I came across this site. while i was searching for a reason why one of my feet is red all the time.
I am diabetic and from what the doctor told me i have neuropathy and with this i do have some numbness around my big toe on the bottom and on two smaller ones. the numbness it's self does not bother me too much, it is the burning red left foot that the numbness is on that is making me go crazy.
the doctor who is a endocrinologist, that i just saw in December, said it was something to do with blood vessels . and that was it, no real answers.
My symptoms are. always radish left foot that i guess you would call a flare up, turns really red and burns and tingles, oh and i suck at explaing stuff. the redness go up half my foot from my toes and most of the time my skin feels tight. but that could be just from dry skin but it looks fine to me.. when i put moisturizer on the skin it gets red again.
i take Gabapentin and Citalpram for the neuropathy, but this does not help with the burning red feet.
so any help and ideas would be so greatly appreciated :)
Hi, of course I don't know whether you have EM or not - maybe a dermatologist could tell you. One symptom of EM that we all seem to have is that the pain,redness,swelling,burning gets worse at night - it may start in the late evening hours and last until morning. The reason for that seems to be that the blood vessels start to constrict in the morning when it's time to get up and be active and they relax and dilate more in the evening.
You can use a fan or buy some cooling pads/bean bags (Amazon has it all) to help relieve the discomfort/pain.
Hi HELMS, so sorry that you are dealing with this. For me it's mostly my right foot, although I've had it on both feet, ankles, calves, hands, face, chest, and ears at different times. I notice that if I wear socks or cover my feet with blankets at night I can wake up with a flare. It makes it tough to wear shoes, and sometimes I have to have a fan blowing on my feet. Some people find aspirin to be helpful, but I can't take aspirin. The type of doctors who treat EM and who have actually heard of EM are usually dermatologists, in my experience. I have Lyme disease and my Lyme doctor had also heard of it and told me that many of his patients had developed EM after they contracted Lyme.
I think you are doing just fine at explaining things! :) Here is a link to an article that is helpful for basic information. If you look around this group at topics from the past I think you will find a lot of discussion on what helps to reduce pain, etc., although different things help different people. http://en.wikipedia.org/wiki/Erythromelalgia
I am so sorry Helms.
This is a painful confusing and for some a downright scary thing to have at least confusing and scary at first. When mine first started I spent the first year or two having the doctors tell me I was crazy because no one knew what it was! I can’t tell if you defiantly have EM but a great place to start is printing out information on EM and bringing that to your doctor so he/she can learn about it then you can discuss if they think this could be EM.
I do know neuropothy is one of the causes of EM. One of the big indicators is if it gets better when you cool the area and does the skin feel warm or hot to the touch when it burns? I find when the stinging tingly burning pressure type feeling happens it helps to also elevate it above my heart. There are many different treatments but each one doesn’t work for every none so most people experiment with the different types of treatments with the help of their doctors.
I hope just knowing that you are not crazy and there are others out here trying to get a handle on this bizzar condition puts your mind at ease a little. I have to look for them but I will send you some more information on EM. The more you learn the more you understand and the less overwhelming it is!
Remember for immediate relief try cooling. I have it all over my body is I have to keep my whole house cool 60-63F but I know others can just cool the effected area. Fans work great as well as chili pads. I found the chili pads on Amazon.com myself. Just be careful with Ice or Ice water. Prolonged exposure can damage your skin and lead to more problems! I myself don’t use ice at all,just cool air or Chili pads, Fans.
Hang in there Helms. We are here to support you so ask us all you like. You have an amazing group of caring people at your fingertips just ready to help you on this strange journey! Take care, Alina
Well I have not found any relief except what Alina already said...nor a doctor that has even heard of it...a dermo doc gave
me amitriptyline and it helped for A WHILE but I had to keep on upping the dose till it finally stopped helping..fan is good
ice packs too and sleeping pills best...keep in touch...Betty R
Alina Delp said:
I am so sorry Helms. This is a painful confusing and for some a downright scary thing to have at least confusing and scary at first. When mine first started I spent the first year or two having the doctors tell me I was crazy because no one knew what it was! I can't tell if you defiantly have EM but a great place to start is printing out information on EM and bringing that to your doctor so he/she can learn about it then you can discuss if they think this could be EM.
I do know neuropothy is one of the causes of EM. One of the big indicators is if it gets better when you cool the area and does the skin feel warm or hot to the touch when it burns? I find when the stinging tingly burning pressure type feeling happens it helps to also elevate it above my heart. There are many different treatments but each one doesn't work for every none so most people experiment with the different types of treatments with the help of their doctors.
I hope just knowing that you are not crazy and there are others out here trying to get a handle on this bizzar condition puts your mind at ease a little. I have to look for them but I will send you some more information on EM. The more you learn the more you understand and the less overwhelming it is! Remember for immediate relief try cooling. I have it all over my body is I have to keep my whole house cool 60-63F but I know others can just cool the effected area. Fans work great as well as chili pads. I found the chili pads on Amazon.com myself. Just be careful with Ice or Ice water. Prolonged exposure can damage your skin and lead to more problems! I myself don't use ice at all,just cool air or Chili pads, Fans.
Hang in there Helms. We are here to support you so ask us all you like. You have an amazing group of caring people at your fingertips just ready to help you on this strange journey! Take care, Alina
Thanks for all the reply s :) if you have Erythromelalgia, is the effected part/s always red? and does your skin feel tight at the spot often? one thing that i noticed i do that is the same is dip my foot into a cool pale of water to cool my foot down and it does take the super redness down. i did use ice water but never soaked my foot longer than a one min, if even that.
i thing i do find strange but might be normal is.. not all the redness is hot or burn feeling.. the redness around my foot does not bother me at all.
Hi Helms!
I find the effected parts are usually red but sometimes it’s more of a purplish color from swollen blood vessels. You are spot on with the tightness. My EM causes my hands and feet to swell too so that will cause that tight sensation. I have found I can have a very mild flare that causes warmth and redness that I wouldn’t describe as painful but you feel something that makes you notice. I think you may be on the right track. Just bring in those pics and print outs on EM and hopefully you can get some help soon. Take care,
Alina
Hi again - - please don't soak you hands or feet in water - it can cause damage, including ulcers. Use rubber boots or plastic bags if you want the effect of cold water to cool down. My hands and feet remain red at all times, sometimes the redness seems to diminish a tiny bit for a day or two and with it the pain recedes. I have had both hands red for more than 6 months but only one was painful; then the other one started to hurt. The skin on my hand feels tight and needs lotion a lot - try an anti itch lotion like Eucerin - keep it in the fridge that helps to cool things down.
I finally got my new doctor to take a good look at my foot. i did not bring up erythromelalgia as i wanted to see what he thought, from his view it was not a diabetic neuropathy issue from look at it and that he said it should not just effect just the one foot.
Even though i know and i have said i do have diabetic neuropathy from a test i took at the hospital last year. but with it i just have numbness in my toes, mostly my big toe. i can manage that.
so he look and asked me a few questions and then check for a pulse in both feet. said my red left foot. which to me had a blueish red look to it at the time. had no pulse or weak. so i need to take a cuff test he said.
he said it might be Peripheral artery disease, it is nice to have a doctor not blow me off and tell me i am wrong and that no matter what anything that goes wrong with my feet ist just neuropathy and not even give much of a look or at all. anyone else have this problems with doctors not listening to you?
Helms, I agree with Tizzy when she stated that having a flare right in front of a doctor seems a much more efficient way of prompting them to pay attention and take action. However, it can still be drustrating even after diagnosis. For example, my blood pressure is quite erratic and typically very HIGH. The doctors know I have EM, but are constantly harping on my high BP. Its like they really don’t understand that the EM causes it and they can’t simply address the BP and expect typical results. My point is, if possible, find a doctor that isn’t set on symptomatic treatments. Try to find one capeable of treating YOU. And don’t give up and accept a generic treatment if you know it won’t work. And don’t lose hope. This group is a wonderful resource for support and knowledge. You will always find someone willing to help when you come here.
So far the new doctor i have. seems to listen to me, it was nice, i always tell my wife that if you want something done you have to make them listen, then i think of that Seinfeld episode where they right down that your being difficult etc.
I never claim that i know more than they do. cause i don't, but i know my body and if something just does not feel right and they keep insisting it is something else without even pretending to even give a good look or anything.. the one thing about my foot is that it is always red. so no worries having to show them if there is a flare up. just when there is a flare up it is super super red.
As bad as it sounds i really hope this is from poor circulation and not EM, but knowing my luck with health issues who knows :P