Thoughts on EM from a caregiver

SHORT ANSWER: Doctors may not understand EM because they rarely see it. It’s different than other diseases and can be part of a mixed disease.
Your skin will be cold purple and the feet happy when you chill them. If you chill them with cold water and fans to get them purple that is because you must and that is all you can do for relief of EM. If they go purple alone without environmental chilling and become numb and cold that’s could be due to other nerve conditions and they are cycling between cold and hot conditions. I think, there is a pure EM that only goes HOT and never or almost never cycles cold. You get cold and purple from mechanical chilling. Some conditions like Diabetics have cycle between EM flares and COLD Numb nerve conditions and so do some poly-neuropathies.

With EM HEAT environmental warmth will always cause a pain flare and environmental chilling will almost always stop the flare. So that is the main trait needed to diagnose the condition. The causes of EM are MANY HOWEVER.

THE MOST RARE and hard to find out about version of EM.
Supposedly in China they even had a virus long ago affect some people (college students) to develop EM. . . and they used a monoclonal Antibody to stop that supposedly. But it’s hard to tell what that was about. I’ve never heard of what they used and how they found that out but they had a kind of rare virus that they gave to lab animals that caused them to develop EM and the monoclonal Antibody relieved that, but the reference I found to that was only for animal research.

EVERY CASE CAN BE DIFFERENT or from different causes.
You’ll find a huge variety of people and their experiences here. I’ll chat about what I know or have found out and include some speculation regarding my mom. I’ve put some past posts below. Neurologists are usually what most people with EM end up going to for the heavy duty drugs. . . for this rare disease. As 1.3 out of 100,000 developed the disease by the OLD MAYO clinic study there’s what under 10,000 people in the USA with EM. But millions have EM flares in this country often Diabetics.

I can’t speak for other cases, but know quite a bit about my mom’s which may be unrelated to many other cases and each patient will have their own history causes and quirks. With a loss of nerve sensation the body may spring into a reactive mode. It may send more blood to a part of the body it thinks is injured. It may have a loss of nerves or perhaps have some added nerve activity. Nerves can even create heat in the body. EM can be caused by nerve entrapment as well according to some early writings. EM can be caused by damage anywhere from the feet up to the brain stem. Often EM is related to a type of nerve damage or neuropathy. I think EM is a special form of Neuropathy or class, which is a subset of a lot of others, and may be mixed in with other symptoms.

There are several causes of EM or EM like flares. A flare is when you’re foot is hot and when blood flow is going to the foot to make it red. The onset of symptoms of a person who has their feet burning can happen with other diseases as well in which case it’s considered “secondary” or a side effect related EM due to other diseases and may be temporary or permanent or the effects may grow worse and then fade away or other effects may cause to EM to subside when it’s secondary. Secondary may mean it’s caused by something affecting the nerves which when that is changed will not effect the nerves. Nerve damage causes neuropathy and there are 100 kinds of neuropathy. and more than one kind may be present with damage causing mixed symptoms as well. The most common types of pain flares are secondary to the most common types of ailments that may cause it. For example Diabetics may experience neuropathy from “small fiber neuropathy” which causes burning and super sensitivity. Small fiber neuropathy means the nerve or small nerve bundles are damaged. Large fiber means larger nerves for examples nerves in the legs are affected further away from the feet, larger bundles. EM is one of the diseases that was present in Civil War soldiers and was called Mitchell’s disease when it was discovered. It was the first ailment that proved damage can be felt in one place of the body when it’s actually occurred somewhere else. In other words the damage anywhere along the nerve route can cause burning foot pain or hot and cold flares. There are EM symptoms that cycle, in other words people may have mixed types of nerve damage which can cause feet to heat up or grow cold and become without heat and numb. The numbness may be accompanied by shooting pains.

With Diebetic conditions the nerves are damaged due to lack of blood flow in small capilaries which cause the small nerves to die in the feet and when they die a kind of small fiber neuropathy can occur which can cause severe pain and pain flares to occur. These go away often after a year, due to the complete death of the small fiber nerves from lack of blood flow and the foot becomes numb and no pain is felt in the foot although blood flow and swelling may occur. This because the nerves are dying in a diabetic nerve condition. There are perhaps millions of diabetics who have burning feet and neuropathy on their path to having totally numb and dead like feet. Once the foot is more dead, the pain may leave them although they have many other problems. I met a girl who had EM or burning foot syndrome side effects and she thought she had the same EM problem as my mother. However she didn’t. Some years later she told me the doctors found out she had a rare blood cancer that caused her feet to burn and she’s being treated with Chemo-drug treatment for the rest of her life. Sometimes a drug that treats cancer can cause burning foot syndrome side effects as well.

Some on the EM boards have had burning foot syndrome with other neuropathies that cycle their feet so they may have numb and cold feet and then burning feet. They may experience extreme discomfort from the numb and cold states as well but usually seem to report more pain during a pain flare. Some drugs help some but hurt others and have no effect on others. It seems often about 30% report good, average or worse symptoms with any of the treatment drugs even pain killers so you have a long path to go down to find out the best mix to cope. My mom has LARGE FIBER neuropathy, not Small fiber Neuropathy. She has the symptoms of that from a nerve velocity study test, which hurt her at the site and caused her to experience pain and shocks at the testing site for about a decade. Which is a rare side effect that baffled the Neurologist. The doctors that usually diagnose EM are often dermatologists, other doctors often won’t do the diagnosis and be baffled. They usually are the ones to diagnose it, perhaps because sometimes medical doctors will think it’s some kind of skin infection. The doctors often as the last resort are Neurologists giving rare or pain killing drugs to treat or try to allow the patient to cope with the pain. Often doctors will never see a case in their entire practice. Our MD has a really large practice and actually has another patient with EM. I also ran into a guy working at an ER who was a nurse and he told me he had EM in his hands.

How do you know if you have EM? Doctors will see the flares and work through the possible causes. My mom developed EM as a side effect of taking Risperdol back in 2002. Our MD at the time knew it came from that and said as much but was powerless on how to treat it and completely baffled, so we moved on from one doctor to another. Mom was tested with nerve velocity studies and also with a numbing of her sympathetic Nerves to test for RSD back when they thought RSD was due to sympathetic nerve disorders and we wanted to see of RSD could be part of mom’s problem, but the pain clinic doctor who tested mom told me before the tests he was sure my mom didn’t have RSD or what is now called CRPS type 2 disease. RSD is a lot worse than EM believe it or not another nerve disorder, but it’s caused not by the nerves but by nerve actuation of the body by other nerves that cause hyper-active nerve triggering. (I’m using common language as this is from memory, so the terms may not be completely medical but this is the general idea.)

Burning Foot Syndrome will cause you feet to burn and flare, but the flares may be more active or triggered more suddenly and the triggers can be annoying and confusing. I almost liken it to overactive nerves like having a nervous breakdown in your feet, where everything is sensitive and hyper-active. But some say it’s like an allergy to heat. I have a FLIR ONE heat camera for my iphone and have taken photos of my mom’s feet and can see the temperature of her feet but you can also get a heat thermometer that measures the skin temperature. Her feet can be hotter than her core temperature, but usually only by at most 1 degree F. What is interesting about her feet is the pain can be high and she can seem to have hot feet when the skin temperature is as low as my natural feet. My feet can be hot and sweety and not feel pain but she feels pain and with relatively low temperature feet. 95 to 101 degrees F can all be hot feeling skin temperatures for her. If her feet are chilled below 90 F where my feet would seem cold she may feel much better. I’m not sure if the chilling is something that helps to bring the temps down or if it’s because nerve bundles are inactive in some way meaning some of the nerves may be destroyed or not function or be malfunctioning and perhaps the brain is “making up” for the hidden signals and it’s just triggering the missing nerves as being on more than they are supposed to be. I liken it to a broken volume POT on a speaker or amplifier, where it’s degraded and some of the wiring for the volume control in the resisters are damaged. The speaker will not change it’s volume and all of a sudden a short will trigger a loud volume as you turn the knob. Imagine a digital bundle of nerves (this is my own theory and totally novice as a caregiver and computer dude). If the brain can remap a bunch of missing nerves and let’s say out of 5000 nerves only 500 remain or let’s say half of them remain. As fewer nerves are stimulated maybe the brain triggers a much larger reaction. This is what I wonder about Small Fiber Neuropathy where people report a small touch can feel like a huge slam or sharp trigger of a pain response. My mother was brushed with a piece of paper from a folder by mistake by a doctor who carelessly swung some papers just a few sheets and lightly hit my mom’s foot when my mom’s foot was near that doctor. The doctor barely touched my mom’s feet and my mom reacted like they were hit with a hammer. This was during a pain flare. So a pain flare can trigger more sensitivity for my mom, at least during a flare. However everyone can be different. I think there are EM or what I call PURE EM conditions which are regular EM and then mixed conditions which are actually more than one condition that has EM as a side effect, they are both bad of course and the mixed conditions may cycle to HOT AND COLD conditions. Some said at one time Primary EM is genetic, but a long time ago for example on the TEA site as defined there Primary means it’s caused or came up spontaineously and is not SECONDARY to another form of EM. Some on this forum mentioned primary is or has been redefined by some and maybe medical science as a whole as only being genetically related. Genetically related is a primary form in my mind because you don’t know what caused it until it’s found to be in the genes but other mystery versions of it are often or have been called primary EM as well. Probably because it just shows up. If you know the cause and it’s another ailment that can be treated it’s called secondary to that ailment and may be lessoned with treatments that resolve that other problem. WIth nerve damage if it can’t be cured or healed and some apparently can’t there is no real recovery just treatment for the pain. In that case there is no exercise or stopping of all drugs to work you way out of it. EM doesn’t work that way most of the time. People go down a long path of taking different drugs and treatments. With my mom the pill seemed to damage her nerves and all doctors agree with that, but how it did the damage may be open for debate.

— PURPLE FEET — Feet are purple when they are chilled. If they are chilled naturally from an outside activity then they will be purple because they are cold. My mom and most EM patients may use ice water immersion because it chills the feet so quickly. My mom can put her feet in an ice water bath maybe a $6 smooth plastic dish water pan with a few inches of cold water in it and maybe 6 to 8 ice cubes, where the water is as cold, not real icy but very chilled, and her feet will almost be as cold as ice and frozen. She used to use more ice and deeper pans. The ice water will take away heat and she used to almost freeze her feet where they were numb for 5 to 10 mintues after she removed them. Almost like frostbite, but not so cold that they did have frostbite damage and then walk around for 5 to 10 minutes. Cold feet will numb the nerves and perhaps lesson the nerve activity that is triggering the flare or rush of blood to the feet. This however is very dangerous for normal people and even those with EM however my mom can tolerate 3x more chilling of her feet than I can with my normal feet. She will often warm up the water bath and over time the room or her feet will warm it up and she will want more ice. Air chiling is safer but water chilling will wick away heat 40x faster than air so it can be colder and conduct a lot more heat away from the foot. It’s considered dangerous and no doctor will tell you to do this and many will warn you against it. The EM people who have this don’t listen to that because their pain is to severe and they will seek relief that these doctors don’t understand. They will seek the relief from water because their feet are NOT NORMAL in any sense of the term and the doctors simply don’t know that the cold water won’t really cause frostbite for these people unless it’s really overdone. My mom can also chill her feet with cold air that I cannot tolerate but once she fell asleep with her feet on an AC vent in the car for about an hour and had PREFROSTBITE symptoms in her feet from over-chilling and falling asleep. After about a year most EM patients will not use water but transition to AC fans and elevation of the feet. This may be do to their pain medication being increased and they may not seek to get immediate relief or they may have some kind of transition away from water chilling or just be warned enough by their doctors and grow tired of side effects of having you’re feet in water which can damage you’re skin, cause infections and also cause you’re toenails to decay and fall off perhaps. My mom’s feet are terrible from the water immersion. But she avoided infections because our neurologist said she can put a couple of teaspoons of Hydrogen peroxide into water to avoid infections from the water or epson salts in the water. This to cut down on infection risk. My rarely uses cold water but may ask for it or have it handy and have it in between a small footstool. WE use a cheap plastic footstool with a pillow and towel taped onto it so the towel can be changed. She has her feet on the footstool rather than use a lazy boy and a water bath is between the footstool and the chair. We cut foam from a thin foam bed topper and cut squares of that to line her water path area inside the dish pan. So there’s a dish pan often with little or no water and we may just put ice in it and the ice will melt and become water over the course of the day and she may have her feet dry up on a foot stool with a fan blowing on it and I also make an AIR BOX cover out of carboard and use a long vent hose a 4 inch vent hose for a normal dryer and run cold air from an AC system toward her footstool. So we have a fain and cold air going toward her feet. The rest of her will still feel coldness from the cold air so she may wrap up to keep the rest of her warm. And often eats off trays.

When the feet are chilled they can turn purple but the pain is often lower at that time or perhaps mom will be asleep from the large dose of opiods she takes. She takes Norco 10/325s and also uses a 50mg Fentynl pain patch but she had to work up to that dose level and most doctors are scared to death to give both opiods. The doctor who set that baseline which she grew used to is afraid due to the war on opiods to give both to her, but her other and current MD can give her that dose level, however it’s something she doesn’t take at full doses per day. She takes HALF DOSES every 4 hours instead of full doses every 8 hours. This works out to not hit her as hard, but she took ketamine cream as a test back in 2016 and that did an opiod reset on her system and she has lost weight. The Ketamine cream was tried after all else failed. He blood flow was find and most EM patients may have no blood flow issues, but everyone is different. She had the blood flow of an 18 year old and she was a senior, she has no problem with blood flow blood flows to freely to her feet. She has high blood pressure but only from the pain. If you’re in intense pain your blood pressure can go up, so during a flare you may have high blood pressure. She used to take blood pressure pills, but she’s off them now because she hardly has blood pressure issues. Her blood pressure was low before she had EM and her normal blood pressure is often more in the normal range, so overall her blood pressure is higher than it was when she was younger.

Many things can cause EM, but what is the SINGLE thing that will cause EM all the time and what is the single thing that will help resolve it? The answer is heat and cold. Many things can trigger EM, and the nerves of the person are sensitive, it’s like their messaging system is out of balance and almost anything can seem to trigger flares, it’s almost like the feet want to be dead, without blood flow and without temperature. A dead foot doesn’t complain. . . sorry for the strange comical statement but I noticed that to be true for my mom at least. If her feet had a skin temperature of 72 degrees quite cold to the touch and they were purple she’d feel fine. They’d be cold and dead, but she’d have no pain. However she might have a rare jolt of pain or pain shock which is way more rare now than before. Her feet also used to be hyperactive in a way or move around a bit when she was falling asleep, but they’d stop when she’d go into deep sleep. Sometimes she’d wake up from a jolt of pain. It’s difficult to tell if that happened if her feet were hot or not. Difficult to measure and control everything. Here’s a sample list of things that seemed to trigger her pain from time to time.

Stress - from a movie or arguement.
Hot food temperature wise.
Spicey foods
Having the feet down and not elevated.
Having the feet warm

Chilling the feet almost always cause relief.
Drugs will reduce the pain sometimes.

For my mom Risperdal caused the trigger I also found out that some complained on this board that Amitriptyline caused their onset although that was rare and only for a few people on the boards. What I found via WIKEPEDIA looking up both is the 5HT neurotransmitters which control vascular dilation and constriction, blood flow, temperature and pain are blocked and reduced via 7 of the neurotransmitter receptors via Risperdal and 6 of those 7 for Amitriptyline. I mentioned that Serotonin (5HT) Antagonistic effects are happening on 7 of the neurotransmitters for Risperdal and six of those 7 for Amitriptyline to my mom’s MD and said I think this is a clue that my mom’s nerve receptors were degraded via the pills and that caused the EM symptoms, but he disagreed with me. He wanted to know why other parts of her body was not affected and the case would not be worse. Why only flares. Well other triggers for example blood thinners and Potassium will cause the symptoms to move to her face and hands and her head will feel like her brain is on fire. So my theory is that the further away you are the more damage from the nerves being damaged will happen and that her feet being furthest from her brain will be more degraded. There is some evidence perhaps but I’d probably favor his advice over mine that drugs that affect the feet or nerves in the feet and peripheral nerves are those that can cross the brain blood barrier. Does that mean they affect the mind and that’s the primary cause? Or is there more of an affect in some other way? I don’t really know this is more like an ignorant guess on my part. So speculation can abound with caregivers as you can see. Our MD said my mom’s EM was caused by the pill triggering a defect in her genes. . . which sounds like a cop out to me. Obviously rare side effects can affect different people likely due to genetics. I have no heard of anyone else on this board or every that had EM from Risperdol other than my mom, so maybe she’s the only one. But to me the clue is that Amitriptyline has caused EM to occur in some. And even the Ketamine .5% and 1% Amitriptyline composite cream mix reported by the Mayo Clinic study on EM patients had a curious side effect noted which was the patients would feel their feet HEAT UP, for a short time from the Amitriptyline before the Ketamine kicked in. Our neurologist told mom and I that if the nerves to the feet were cut or destroyed the default immune response from the body is to SEND MORE BLOOD to heal the injury. So a person with diabetic foot condition with dead nerves will get more blood flow and swelling, they just won’t feel the pain.

Ketamine was tried 6 times by mom or three days with 2 applications per day of the mix mentioned above, but she had side effects. Then we tried it without the Amitriptyline. There was a break between the applications. The feet went from a constant pain level of 7 (with 10 flares) to a pain level of 2 or 3 with the Ketamine, but she was taking the other opiods at the same time and the ketamine probably gave her the same effectiveness of say a 250mg pain patch, which is WAY BEYOND WHAT anyone could take. This is just my guess. A 100mg pain patch could kill most people and they don’t even give those to people unless they have been on other opiods and work their way up. My mom has lost weight maybe due to age, maybe due to dietary restrictions she has made. She has so many fluxuations in her condition I don’t even chart or track all the stuff anymore. There’s to many pain triggers and it’s to high a workload to do this constantly. The KETAMINE CREAM did likely reset her opiod tolerance and as you age they may hit you more as well. But she probably needs to come down on her opiods. I’m going to talk to the doctor because she can go without them longer and survive and have no huge flares, so she can probably use a lower dosages rather than skip half doses. I like the HALF DOSE double the dose time deal for seniors because if they forget and take a second dose, they are only doing a full dose for 8 hours so it may not KILL THEM that way. If they are taking a full 8 hour dose and forget they took it and take another one, they might overdose and die. And that’s something one hopes to avoid.

Your doctor if he’s thinking clearly won’t likely do a test for EM that will verify that heat is the trigger. They won’t cause a test to see if you have EM by heating you’re feet and causing a flare. That would be to much like torture to them. But the patient may want to try this themselves as a test, but they’ll quickly be chilling their feet. Some have said they may be able to “reset their heat tolerance” by heating their feet one gal from France long time ago said something like this on the boards and claimed she found some kind of supplement remedy that worked for her. I doubt that will work for most EM suffering patients.

The average doctor will not have seen any other EM patient than you when you see them. They will read up on it like any rare disease. Imagine millions of diabetics having EM flares for about a year and some with neuropathy having flares both hot and cold symptoms and then you show up with PURE EM, my term for it. Only hot flares and only cold feet when you’re so jacked up with weird drugs you’re affecting you’re nerves pushing them toward some kind of Raynalds side effect. Or you never get relief from any of the drugs they suggest. Aspirin and Tramadol treatments were some early low level pain killers my mom tried which didn’t help at all. Also some things like metropolol or even a cat scan drug to allow different imaging profiles triggered a flare or movements of heat throughout my mom’s body. She got a catscan and the drugs they gave her for that caused a massive flare at ER when she said her feet felt like they were on fire like charcoal. That was one of the worse flares she had. So every treatment has to be taken with caution if you are taking nerve medications that trigger a flare, my NON-MEDICAL advise is call you’re doctor right away. Risperdol has permanent antagonistic effects on one of the neurotransmitter sites and my mom has had essentially a pain flare fragile condition constanly since 2002 to this day from that drug. So I’d be highly suspicious of some brain and nerve treatments drugs, for example if Amitriptyline caused an onset of symptoms well what other even worse antagonists acting the same way are out there, don’t take Risperdol if you have a bad side effect from the lesser of two evils for you’re rare foot condition. For the few that have had that. That being said my mom takes a nerve pill for “PAIN” called Ativan. She was prescribed that as part of her pain medication by her neurologist and other doctors at times wrote in their notes that she was taking that for mental health reasons, which was false and not what they were prescribed for. They may be off label and for pain and if you go to a hospital and they look at the medication list with a rare disease the medications may cause confusion to the medical staff. This has been our experience, but we’ve had some strange things happen which can happen with health care dramas. In our case we are stuck with the massive pain medication and the side effects that are negative from those are still there although the pain and debility allows them to be prescribed.

I would not recommend QSART testing where they heat you’re feet. I read about someone having one of those tests. I wouldn’t recommend them putting you’re feet on a hot device to test the response. But you might want to try it yourself at home to confirm heat is a trigger, but most know this from their everyday experience.

I don’t know about “nerve velocity studies”. Ketamine worked great for us but caused GATE DISTURBANCES and unsteady muscle control and weakness it seems. My mom lost a lot of weight as well. So I’d say you have to watch out for side effects of some of the more heavy duty drugs like Ketamine. It’s something you try as a last resort if you’re in severe pain and willing to take the risk.
NERVE SITE numbing of nerves on the feet. Tibial and other nerve block was performed in different times. . .

My mom has had foot doctors perform local injections of nerve numbing agents. These were meant as temporary block experiments before we might ponder doing something like that more permanently but doctors advised against any permanent nerve hail mary attempt to “numb the feet permanently” via injections and party death of nerves.
Our MD was unsure if that was a good path to take and try but I mentioned that a nerve agent injection is essentially the same thing that many EM patients do to themselves when they chill their feet in buckets of ice water to numb them. I said they are numbing their feet lowering nerve activity naturally using ice water. Isn’t that essentially the same thing we are doing with numbing agents, but without ice? That point was well taken and he said go ahead and try it. But the foot doctor did the numbing.

In other words our diagnostic experiments with temporary nerve blocks worked okay but we didn’t go for any permanent nerve destruction via diluted Alcohol injection into nerve sites. That was to risky and the neurologist said the feet would turn black and amputation would be the result of that path. Mom has had maybe 25 temporary nerve blocks for EM, not used nor covered for general neuropathy conditions by our insurance also. This was deemed okay for EM somehow the way the doctors worked this out. But in some cases the insurance companies will play games. I think one of the doctors ate a half a dozen visits and didn’t even bother to go after the insurance company and appeal their paperwork denial.

Some people if they have the NAV 1.7 gene defect that is a precursor to EM find that a heart medication may help their EM symptoms. It only helped 20 percent of those with genetic EM according to some studies. That drug cannot be given to patients if they are on pain medication and it requires a 3 day hospital stay to make sure they have the right adjustment of that drug in the system. It’s to difficult for my mom to get off pain meds to try that and we haven’t done the genetic test for her.