Hi my name is Valerie.
I was wondering if anyone can tell me if my symptoms sound like EM. For the last 5years l have had burning toes mainly at night but sometimes during the day too, worse in hotter weather.
It wasn’t till recently that l noticed they were actually red as well. A few months ago l started to get very red, numb, tingling and extremely painful toes on one foot if l was standing in one spot. The redness would disappear if l elavated my foot. The hotter weather seemed to make it worse. My GP thought l might have a neuroma but ultrasound didn’t show anything. Now he keeps telling me its from a pinched nerve in my back. Now that the hotter weather is here l find l cannot stand for very long without being in severe pain.
Hi my name is Valerie.
First of all thanks for giving us more information about your condition.
It certainly sounds like EM to me. Everything you describe is a symptom of EM. The problem is that most doctors have never even heard of it and that’s partly why we have a problem being diagnosed. It took 12 years for me to get a diagnosis! The other thing is that there are so many things that can cause it, plus it can be primary.
My symptoms were blamed on loads of things until eventually they found out I had rheumatoid vasculitis.
The only way I got a doctor to consider it was to print out the page from here “What is EM?” The consultant at the time was a dermatologist, but at least he listened and it was from then on that doctors started looking for answers more seriously.
I hope you manage to find out the cause and get help relieving your symptoms by being a member here.
Thanks for the reply. I have an appointment with my GP in a few days and I’m going to mention EM. The last few times I’ve mentioned to him that my toes are going very red when they get painful, he looks completely lost like he has no idea what is happening. One more question, l know everyone is different but my toes have been going numb and tingly all the time. Could it still be EM?
I am not at all surprised at your GP looking completely lost, as I said most doctors don’t know about EM.
Your description of your toes going numb and tingly sounds very much like nerve damage. Are you diabetic? If it is nerve damage that is one of the causes of EM. You say you had an ultrasound done which wouldn’t show up nerve damage. You would need a nerve damage test done. Maybe you could suggest this to your GP as a starting point…
Hi Valerie - I usually get tingling, pins/needles, or even numbness in places from swelling when my feet flare. It can be mildly annoying or really intense. In fact, those sensations are typically the warning signs for me that a flare is beginning. If I’m able, I’ll quickly try to elevate or find cooling in an attempt to head off a flare.
Most doctors just don’t have any idea what they’re looking at so they try to explain the symptoms by naming some much more common malady. Your symptoms sound like some of the hallmarks of EM - redness and burning with heat and standing. Relief with elevation. Do you get flaring with activity? Does cooling provide relief?
You might want to bring some photos of your feet while flaring to your dr appt as well as some info about EM. In my experience, it can take some persuasion to even get the dr to entertain the idea that it could be something so rare. I know many of us were self-diagnosed before ever finding a knowledgable doctor.
I’m not diabetic. Thanks for the suggestions l will mention them to my GP when l see him. I didn’t realise not many doctors knew about this condition. I just hope l get diagnosed soon and start some treatment as life is becoming unbearable.
I don’t have any flaring with activity, it’s mainly when l stand in one spot like cooking dinner or washing dishes. Cooling provides a little bit relief.
It is surprising that doctors don’t know about it. One thing we hope to do here is to make doctors more aware. As for it being rare not my EM but another thing I had was pheochromocytoma which is also very rare only 1 person in 2 million gets that. One endocrine man actually said to me that statistics show it’s very rare therefore you haven’t got it! At that point I asked him if he bought a lottery ticket as it’s very rare you win. There was no comment and I walked out and got a second opinion.
Wow! I in 2 million and you happen to get. I realise nothing’s rare as l have a sick husband who has a rare brain tumour.
Sorry l more question. With EM do the feet feel hot to touch or just feel hot?
First of all I am sorry about your husband my husband passed away a couple of years ago a brain tumour!
To be honest I don’t know if my feet and legs are hot to the touch as unlike some other people my hands aren’t affected and they are often cold so to me my feet and legs felt hot. Really feet and hands should be the same temperature but I have vasculitis and one of the symptoms is different skin temperatures on different parts of the body. So I am not the best to ask maybe someone else will answer.
Also don’t apologise for asking questions that’s what we are all here for.
I’m so sorry to hear about your husband.
I’ll keep you updated after my doctors appointment.
So I’ve seen my doctor. I had an xray to see if there was any arthritis, but it all came back clear. I asked if it could be EM and he shook his head and said that it was very rare. I’ve been given voltaren and referred to a foot specialist. I’m hoping there’s not a long wait to see the specialist, I’m in so much pain. My 3middle toes feel numb and sore all the time now, worse with standing.
So you didn’t get any further as there was no arthritis. The most annoying answer is it’s very rare! Doesn’t mean to say you haven’t got it.
I hope you do better at the foot specialist’s.
My appointment isn’t for another 2weeks. I don’t know if l can wait that long I’m in so much pain. I believe l have EM but something else is going on as well. The pain started in one foot and now the other one is sore as well.
I will keep you updated.
Here’s some feedback about my mom’s strange EM condition. Her feet are hot and she at times will have skin temperatures that are warmer than her core temperature. A flare for her will show warm and red skin and her feet will be hot, but her skin temperature may be actually “normal” as a skin temperature and a desirable skin temperature for a normal person.
How can that be? Well it’s just the way her EM works and maybe the way other people’s EM works. I have a FLIR ONE camera that attaches to my iphone and I can take images that show her foot and skin temperature. People purchase these cameras to take photographs of heat images, perhaps to see where they need to add insulation to their house. You can also get an IR temperature thermometer that uses a IR light to bouce off your feet and it will take the temperature of you skin, which can be different than your core temperature.
The FLIR camera can show the temperature of the skin, and I use the F setting because I’m in the USA. Now a normal person may have skin temperatures of say 97 to 98.6 degrees in their feet and they will feel fine. They may have temperatures a little over that. On the FLIR ONE temperatures may be a little bit off on the display. I’ve had two of their cameras and these readings can be off a bit. Maybe as much as one or two degrees from an IR temperature meter, so you’re better off using an IR temperature meter, which is a lot more affordable.
The skin temperature of my feet may be 98 or 99 sitting in a room with normal temperature, even in a cold room and my feet are nice and toasty, but they are not hot or don’t feet hot. They may even sweat a little but they won’t feel uncomfortable, because I have normal feet and don’t have burning foot syndrome. My feet will also “look more even” in their temperatures in the feet if I take an IR image using the FLIR one camera.
I may have warmer areas, but they are pretty much even. Now my mom can be sitting in the same room and her feet will have red and swelling and edema like looks. As if they are hot and bothered and they are. And they can be in pain and have a slight or even bad swelling happening. Plenty of blood flow and they will be red and look like they have a rash and have sunburn. They will be perhaps still only 98 degrees and be red. They may be 95 degrees and be red. They will be red where the flare and pain is. And they will often swell up as well. And of course if they swell up a lot they may put pressure on the skin and her feet may even have a toe that splits open and bleeds because of elevated swelling which of course is really bad as well. And she will often feel that her feet are to hot and they need to be cooler.
Now if she puts her feet in cold water, which might be 65 to 70 degrees with ice cubes in the cold water. And at times parts of the cold water may even be cooler near the ice cubes it may be 50 to 55 degrees. In this cold water immersion bath her feet will cool down.
And her feet will become purple from being overly chilled. They will get cold and be frozen from a neurological perspective. They will be cold around 70 degrees in skin temperature. Keep this in mind. If her feet are cold and purple, and in the 70 to 80 degree range, they will have no pain. They will be frozen or almost in a state of being frostbite. And if they are put in that condition for a long period of time, say 1 hour on an AC vent in a car, they may get “pre-frostbite blisters”. Which is not a good thing. But her feet often will heat up the cold water bath and it will rise to a temperature of 75 or 85 degrees, bringing that up to a much warmer temperature, from the heat of her feet. And she will be able to heat up water faster than I could if I put my feet in the water. This I believe is one of the “hidden blessings” of her condition. She can take more cold water immersion without fear of frostbite. I think my feet would be cold and damaged from cold water immersion probably three times faster than her feet. But I haven’t tested my theory. This based on casual observation.
So her feet want to be in the 70 to 80 degree range to be without pain. This is why EM suffering patients want to do water immersion. Now obviously there is a frostbite danger and doctors are afraid of that, and rightly so. But with a person who is generating extra heat likely from neurological issues, the nerves can create a lot of heat, so this is not muscle induced heat, like a shaking of muscles, it’s likely heat from nerves . . . that’s my guess anyway.
So she has this condition where a normal skin temperature for me is like a hot flare for her. I like my skin being 98 degrees in my feet. They feel perfectly normal. For her 98 degrees is torture. It’s like her internal sensing gauge is off and not working properly.
Imagine the comfort level of your feet being like a roadway on top of a cliff or on a narrow bridge without guard rails. And you feet being normal might feel comfortable when you’re skin temperature is from 90 degrees to 102 degrees F if you’re normal. But with EM you’re gauge in your body is messed up. So now you’re feet want to be on a road that has your skin temperature at 75 to 78 degrees, not 90 to 102. At 102 degrees probably anyone will start feeling their skin is warm and sweating will result. But with person with EM, they feel like their feet are hot when the skin temperature is above perhaps 85 or 88 degrees, which would be the case of my mom. I don’t know if the “scale is more narrow”, but it seems that way. . . sometimes like a razor’s edge. And that might just be a colder foot craving of sorts that the body has.
To put this in perspective, if your body was dead, you skin temperature would be at about 72 degrees. You’re body would be very cold to the touch of a normal person. My mom’s feet feel chilled and cold but without pain at 72 degrees F. It’s almost like her feet want to be dead. When they are warmer, they can feel pain.
Now some have suggested here, that there may be a way to “train your feet” and body to get used to higher temperatures, and get used to higher temps again, by using hot water bottles and putting your feet into an enhanced flare. . . training your body to get used to the regular temperature as normal again. Maybe this will work for some. We have not tried this yet, because my mom’s flares are really bad when they happen. But she has stated she is willing to try this so we may try this soon.
You can get a gauge from a local pharmacy for perhaps $30 that will tell you the skin temperature reading of your feet. They are pretty cool. My FLIR ONE camera is more expensive of course, but it gives a full picture with color showing the temperature of the skin or objects. It’s pretty cool.
I went to a local pizza restaurant and took some test images of the faces of the help, with their permission. One girl came from the back and her skin temperature on her face was 114F. She was near the oven and the heat in the back made her skin warm and of course she was sweating. Another girl had a cold nose and her face was normal but her nose looked to be a cold blue color on the FLIR imager. It was over 15 degrees colder than normal, with a marked lack of temperature. I mentioned this to her and she mentioned that she had neuropathy from a diabetic condition. This affected her circulation and made her nose cold.
My mom can have a flare in part of her feet. A few toes can be warmer than the other ones. If she is chilling the feet and removes them from the cold water, a part of her foot may become warm while other toes remain cold.
She also has restless leg like symptoms in her feet. But she can have her entire foot move and only part of her toes can have flares. So the pain and flares is not from muscle contractions from RLS like symptoms, which could happen to some people with RLS. She actually is getting flares, from a nerve condition, not a muscle contraction issue. People who have an adverse reaction to Serotonin levels, Serotonin Syndrome, may have violent shaking and convulsions that are very violent and cause a lot of muscle activity. This would be an extreme reaction to drugs and a near death experience. Those who have experienced those things, may have coma and death from those episodes, and those who have that happen in the midst of a violent seizure might have an elevation of body temperature in their muscles due to muscles creating heat. They can have temperatures inside their bodies get as high as 114 degrees F from muscle contractions. And at 109 degrees the muscles and tissues in the body will start to be destroyed and be damaged. High temperatures from Serotonin syndrome that causes seizures can kill a person.
I hope this has answered your question.
In summary, EM will often get worse from normal temperatures or a rise in temperatures in the feet. The feet will likely show high temperatures and not be without pain unless you cool them and the skin is abnormally low. What is normal for an EM patient to be without pain is to have low temperatures in their skin where the EM exists.
If the person takes certain medications or has other neurological issues they may show Raynaud’s like symptoms which is numbing symptoms and coldness. They may have cold hands or feet with the counter symptoms of Raynaud’s. Certain mixtures of drugs, Cymbalta, Flexerol (muscle relaxer) and cough medication, among the mix may have pushed my mom at times to have Serotonin syndrome like symptoms that would give her cold and numb feet or hands.
But in my mom’s case she never has Raynaud’s like symptoms in her general condition. She has only HOT EM. She will have purple feet and feel cold from ONLY environmental chilling. If I left her body in a normal room and she had her feet down or walked, she would have flares. . . and unfortunately for her, she would likely have continous flares, unless her feet were chilled.
And in her case, the flares can happen with facial flushing and warmth in other parts of her body. But that warmth is just a flushing without pain in her hands and face. So she can have the hot symptoms move up but without pain. She has also had the hot symptoms move up into her skull and felt like hot flares were moving into her brain when she was on blood thinners in the hospital or taking some pills, like Metropolol which is a blood pressure medication. So she has had some medication which affects blood flow cause her EM symptoms to move up into other parts of her body as well.
EM is a strange disease. In my mothers case also her RLS symptoms will cease when she is in deep REM sleep. Her feet may move when she is awake, and sometimes they are calm when she is awake, but often they will move. RLS can be a symptom or affiliated with neurological issues also.
My mom can have a flare when her blood pressure is high or she can have a flare when her blood pressure is below normal. So it’s not related to blood pressure as far as I can tell. Her blood pressure will go up from pain most of the time. I’ve had her blood pressure drop 30 points once in about 10 minutes, without any medication, but only from chilling of her feet with ice packs.
Take pictures if you don’t usually have flare up throughout the day so your doctor can see what you have going on. I thought I had erythromelalgia a year ago and mentioned it to a doctor and they tried to tell me I had a allergy to something but I knew that wasn’t the case, I knew it was neruovacular but I couldn’t explain how I felt, I just knew it wasn’t just my skin. I finally got diagnosed a couple weeks ago! Which was a relief to have a answer. If you have a doctor that can be egostical, you have got to almost make them think they came up with the dx, bring a print out of em and leave it with the doctor so next time you see them they will be informed.
I didn’t realise it’s been so long since I’ve updated. I saw the foot specialist and had an MRI, everything came back normal. He thought i might have an irritated nerve so he suggested i get a steroid injection. Took me a few months before I found the courage to get the injection. Your probably wondering why it took so long when I’m in so much pain. Long story short i was born with the most unusual toes and I’m so embarrassed that I don’t like anyone looking at my feet, i wear closed in shoes all the time. Anyway the injection didn’t work, if anything my foot has gotten worse. So i waited a few more months before i saw my DR and he suggested we try Lyrica. I took it only for a week as it made me so drowsy. So now I’ve been referred to a neurologist. Having second thoughts about someone else looking at my horrible feet.
So I’ve seen the neurologist. He did a nerve conduction studies and an emg. He said all my pain was coming from my back. Now I’m confused how could my toes be turning red when they burn from my back. He prescribed Endep and physio and told me to see him in 3 months.
I’m thinking your neurologist thinks it’s a pinch nerve in your back?
Maybe the back sciatic nerves that run down the side of your legs to your feet??!
Curious how you do in 3 months or sooner
Thanks for the reply, I forgot to mention, l have 3 slipped discs and a trapped nerve.
My pain is there all the time, gets worse as the day goes by. And by the
afternoon the burning and redness start. I find it hard to believe it’s
all coming from my back.
Started the endep last night , feel so drowsy this morning.