Hi, I'm LaurieI

Hello, thank you so much for allowing me to join this group. I started having pain in my feet 3 years ago and that started my roller coaster ride. I did the usual visit to my primary care physician who kept trying to blame it on diabetes which I don’t have, they said it was a slow, progressive disease), then the neurologist who ordered an EMG to say I had neuropathy but couldn’t prescribe anything to help the pain. The rheumatologist tried to call it sjogren’s syndrome, the vascular doctor said everything looked fine and arterial ultrasound was good. In July of last year, I started noticing the redness that came along with the burning. By this time I had already applied and gotten a medial marijuana card. My niece is a PA in Tennessee, I sent her a picture of my burning feet, she did a little research and said she thought I had EM and there are five doctors in my area that treat it. I made an appointment with a dermatologist who confirmed the diagnosis of EM. After several trips of seeing her, she ordered an MRI of my lumbar spine (which I had requested several times from my neurologist and primary doctors only to be told it wasn’t needed) which showed severe spinal stenosis. Made an appointment with a neurosurgeon and had a lumbar laminectomy with no relief to my burning feet. Went back to the dermatologist and was told that my redness was much better but would have to go elsewhere to be treated for the pain! Now I am under the care of a pain management group to oversee the management of my pain meds (tramadol 200mg daily). They tried a sympathetic nerve block with no relief and now want to try a spinal nerve stimulator. I was wondering if anyone else with EM has tried this and if the results have been positive.

I have had a 90% pain reduction in a five-day trial. had it permanently placed 1/7. pain gone. numbness only in both feet. hoping for further success but thought you would like to know.

forgot to say name is bonnie!

Thank you for your feedback.

Hi Bonnie,

What brand of implant do you have. The doctors have given me an option of 3 different brands.

Hi and welcome to the group. I have so much going on with caregiving to two elderly parents one with EM and other family dramas of late which are unrelated to EM, I often may miss some posts and not put my 2 cents in on a topic.

For EM as far as I can tell but this if from my reading message threads here and only from my mother’s personal experience Spinal cord stimulators will not help it, and may even make symptoms worse. I think most neurologists would agree, but you may want to run it by the neurologist before trying that.

Additionally as far as I can tell from some past readings of posts and some reports. The sympathetic nerve block was used many times for diagnostics of RSD or CRPS type 2 conditions, but this was long ago. And that was not even a valid way to test or treat what used to be RSD. Some people with CRPS type 2 problems which is a really different nerve related disease (but the nerves are undamaged), get flares for a short time up to a year and then they seem to stop when that disease progresses to something worse. Some with that kind of disease get flares longer than a year. But some get EM flares as a result of some other problem or disease which makes it secondary to the other disease and it’s resolved when the other disease is resolved.

A sympathetic nerve blocked was supposed to help one Korean child who had EM in one study. I’ve read about that and it was the only thing that helped her. But I haven’t read about it helping any other EM patient. The idea behind that kind of block is to stop a feedback cycle of pain in the sympathetic fibers which are not supposed to be carrying pain signals but used to be thought to be carrying them for patients with RSD. The problem with that is, RSD isn’t caused by that happening anymore. And your pain signals are not going to be travelling up those nerve fibers. So the pain you likely feel will be coming up normal sensing nerve fibers. This means a sympathetic nerve block is useless for the treatment of most EM and is likely an old approach to trying to treat some nerve diseases and may have been tried as a diagnostic or as a help to treat EM. And I don’t think it will work. But I’m just a caregiver, your doctor and experience with tests will show the results or give perhaps more light on that subject.

Now concerning the electronic pain treatment option. If the nerves are damaged in some way, that is adding a noise signal to reduce the pain. EM pain is often much higher in the pain thresh-hold than any nerve noise will mask. It will likely be un-effective for most EM suffering patients. Additionally who knows if that could even damage your nerves further in some way. As it can’t provide enough pain relief, it’s more like hitting a nail with a feather than a hammer, it likely won’t work.

With EM what happens is people will go through a course of medications they test until they find the right approach.

Often this includes Tramodol and asperin therapy, which I think and this is only my unprofessional opinion, but I think that helps people with mixed neuropathies and some EM flares, but not those with a more “PURE EM” which is my term for those who have EM which is only resulting in flares and no mixed symptoms. If you’re experiencing a more pure burning only EM. In other words not something that has cold symptoms like Raynalds or diabetic caused EM flares, then you are probably experiencing some kind of rare pure EM which only gives you hot flares and never cold chilled feet symptoms. The “pure hot only EM” is my term and my own unverified theory, so much more study and a real set of doctors and medical staff would have to verify if that is a good theory which I’m stating here from some posts I’ve read in the past and some statements I’ve read here, but also my SOLO single patient experience which MAY NOT represent you’re version of EM. So results can vary. To me it seems that the Tramodol and asperin therapy won’t work with the “pure hot EM symptoms” and the patient will be moved onto different drugs and stronger pain killers to try to resolve the pain symptoms not cure the EM.

And this will include perhaps Neurontin, Cymbalta, Lyrica (which is just the same as Neurontin once it’s inside your body but has different strength levels. From a nerve pill directed off label toward pain these are used. And from a pain pill perspective other drugs will be used which will be stronger and stronger, and they may end up being Opiod drugs which are quite strong. Including Norco and Fetynl pain patches.

If those don’t work very well or you develop a severe case that gets much worse you may reach a limit on Opiod drugs and doctors will be afraid to prescribe them because in the USA there is a politically correct war on Opiod drugs, which is both politically correct at this time, but also addressing the Opoid overdose crisis that can happen to patients or drug addicts addicted to Opoid pills illegally.

The other treatments which may be tried which are considered even more radical and experimental for EM can include Ketamine cream either mixed with Amitriptyline (to reduce side effects of ketamine) or without it. They usually include the Amitriptyline in the ketamine cream mix and that will increase the strength of the Opoid pain killers and can represent a possible danger with the Opoid drugs being taken at the same time. The additive effects of Ketamine may make the Opiods work better up to 3x better than a dangerous dose of Opoids that would stop your heart and cause death. At least that was our experience. Ketamine and opiods made the fentynl pain patch act like a 250mg patch which would surely kill any patient. It was that much more effective. But other side effects kept us from using that compounded cream. If you take or try Amitriptyline either in pill form or in a cream and experience burning symptoms I’d suggest immediately stopping that and not taking it a all as some have reported it as causing their EM symptoms and it affects nerves in a similar manner as Risperdol which caused my mom to have EM in the first place. Risperdol is more dangerous in my mind and from our experience than Amitriptyline so if someone takes the latter and has any burning foot symptoms please do yourself favor and avoid Risperdol like the plague.

There is another possible treatment that works for some EM sufferers which is Mexilitine which is oral lidocaine. That is an old drug to change heart rhythms. It’s an arrhythmic drug which they don’t use anymore and is hardly every prescribed. But it helps some with EM symptoms, supposedly up to 20 percent of those who have EM that have the hereditary genetic form of the disease. Genetic mutation of the Sodium NAV 1.7 channel. This heart medication may modify your heart beat and the “low dose used for neuropathy” of that medication does not show much effectiveness according to one test study with EM patients. They had to use “cardiac doses which are higher than some test doses of this drug for other neuropathy.” this means the heart medication if that is a test route you’d take after genetic testing often would be done in a hospital setting so they can monitor your heart, perhaps for three days to make sure you get enough of a dose to work but not so much it would cause dangerous heart rhythms. You can’t take the heart medication to help your EM if you are on massive Opoid pain killers. So if you do end up on the heavy duty opoid pills they will have to weed you off them before they try the heart medication approach.

But also consider that the Oral lidocaine can also be perhaps a sign that a nerve pain blocking technique could work with is not commonly tried or officially recognized perhaps by most insurance plans or medicare. That would be the use of a pain block of senory nerves like a tibial nerve block using lidocaine injections in the nerve either the pain nerves in the ankle area or on top of the foot which is a different nerve branch. In that case one may be seeking temporary relief by numbing the foot as if it’s going to be operated on. It could be considered a diagnostic nerve block. And if doctors are billing this as a neuropathy treatment, Medicare may rule or your insurance plan may rule that as not being properly authorized for your “neuropathy”. This my be because they are not using the correct description for your disease and the way it’s written up may not explain that this is an extremely rare EM kind of burning disease and not common neuropathy.

With EM suffering patients often will use cold water immersion or ice water to begin with for severe flares and they will do this because it’ the only thing that works. This ice chiling of the feet brings relief and is one of the ways to diagnose practically that this is indeed EM. Only environmental chilling may stop a flare from a practical point of view. But doctors who have not seen this disease will fear skin infections from exposure to water or frostbite. But a person with burning foot syndrome may not have the problems with frostbite as much as a normal foot on a normal person, because their foot is having a literal warming up and it will warm up moderately cold ice water baths and the EM patient at least if their EM is like my mom’s can handle about three times more cooling load before worrying about frost bite than a normal foot, like mine would experience.

As EM patients are for all practical purposes using home remedies like ICE water to treat their feet at first, they may experience infection risks or skin problems from prolonged water immersion. One way to reduce infection risks from water is to put a small amount of peroxide in the water. Another way is to use epson salts.

My comment to my mother’s MD regarding suggesting nerve block tests was that the nerve block was essentially for all practical purposes the same thing as chilling the feet with ice water which many EM patients do. I said to my doctor EM patients are already getting relief from freezing their feet. Some might chill them almost to the point of frost bite and the feet would be numb and then they could walk on them for five or ten minutes until they warmed up without pain. So this virtual freezing of the foot, which is the way my mom would describe it, gave them relief. And a nerve block is doing the same thing. So the doctor agreed that a nerve block would be a good thing to try. My mom tried a nerve block first tibial nerve blocks with a foot doctor doing that. Foot doctors who perform foot surgery are very familiar with doing a nerve block of the foot, where normal MDs may shy away from that and not want to do it. So we had a foot doctor do some tibial nerve blocks. This is not the same as a sympathetic nerve block to the spine which didn’t help my mom at all, with her strange and possibly unique version of EM.

So we tried a tibial nerve block of both feet. We even tried it with one foot first to compare how it worked with one foot verses the untreated one. And mom had some relief with the nerve block. She had pain relief but still experienced a swelling of the feet with activity. She had still needed to cool them to get the flare down. So environmental chiling was required but it did result in less pain. The first nerve block test worked better than the second and third test. The foot doctor was trying different mixtures of blocking agent as well the last one being a steroid which is longer lasting but hits the person less compared to lidocaine. The three tibial nerve blocks showed good results. The Ketamine Amitriptyline tests were as effective as the nerve block but other side effects made us stop the ketamine. The MD was surprised to hear that the ketamine worked so well. He suggested we needed to try the test further and see if she could put up with the side effects. I looked up the side effects of amitriptyline.and realized many of the side effects could be from that. So I suggested we try the ketamine cream without the other agent, and it worked well also. But mom experienced gate disturbance, she was more unsteady and wasn’t showing as much muscle control in her walking. So we stopped the ketamine.

Ketamiine cream, and nerve blocks are some of the last resorts you may try. It may help you but it’s not something I’d suggest one ask their doctor to consider early on in the tests of various treatments. One has to have some patience unfortunately with this rare disease and try different drugs. We also tried some other drugs in her case. Oral Mophine seemed to work well in some early phases of her disease, but it was difficult to get that prescribed. In my mom’s case and your case will most likely be way different my mom has a very advanced and bad version of EM, so she tried different drugs and for her some of them were totally ineffective.

My mom has no small fiber neuropathy at all according to tests. Her nerve velocity tests showed she has 50 percent reduction in nerve activity meaning she has large fiber neuropathy.

In the case of the spinal stimulator, I can’t say for sure it won’t work. But it’s likely your neurologist may tell you that won’t be a good idea. There is a version of the spinal cord stimulator called THE SCRAMBLER which has been used for cancer pain patients. It uses a different waveform and is tuned by professionals to get a level that works. It masks pain signals differently and might be worth trying for EM patients. They tried this but only for CANCER patients at the Mayo clinic. It may be hard to find a location that has THE SCRAMBLER. I don’t know if any doctor would want to try using that for EM. It might be worth the a try.

For my mom’s condition we were going to try the diagnostic nerve blocks to determine if we should try a HAIL MARY Pass kind of thing to do a kind of permanent nerve block and give my mom effectively an artificial form of Diabetes or numb feet. This would in theory get rid of the pain but all the drawbacks of diabetes would exist. Although a doctor suggested we might try this, it was admittedly a completely experimental idea and risky as it would give her a different foot problem. Many doctors perhaps all doctors would not agree to do the nerve desctruction procedure and inject mom’s nerves with an alchohol solution to kill nerves or some of them. My neurologist said it’s a bad idea and there is some evidence at least as far as I can tell from his comments and medical literature of course which verfies those that a nerve block would basically cause flares to happen automatically and blook would flow to your feet if the nerves were killed to give a diabetic nerve oondition. To even consider such a risky procedure seems very unethical to some doctors because one is in effect harming the patient in one way to try to treat a different symptom. A trade for diabetic feet and possible gate disturbance for EM may seem like a good trade but many doctors would say it’s not a good idea. So that’s almost an impossible thing to try.

One may get more than one nerve block injection for pain relief over time, but multiple injections in a skin site will cause the cells to break down from more than one injection So doctors may do more than a few diagnostic nerve blocks for your EM, but may have a limit and not do to many of them. My mom thinks they help her (at least temporarily) and she has had about 20 of these which are not going to the tibial nerve but to a nerve on top of her feet.

There are likely other mediations mom has tried. The strange thing about EM is three people can seem to have the very same version of the disease and testing a medication on one may cause their symtoms to improve and another person may say no result or change happened and a third may say it made it worse. There should be an underlying way to diagnose this in detail and get a good description of what nerves are being damaged. But a neurologist may not express what they know about it or your version of the disease.

I’d type a little more but it’s really late (in the early morning) and I need to get some sleep. I hope this has helped some. It’s important to be patient and realize you may be in for a long haul. If your lucky you may find the cause and some solution or it may not be so bad that you can barely walk. My mom can barely walk 20 yards a day because of her EM.

we have some things in commin my friend I can totally relate to all the trips to different dr offices I went to a rheumatologist also he said I had something wrong but whatever it was wouldn’t kill me. He then said I should see a vascular dr well after 3 sets of different tests they said all of my test look normal but that I was having something happening they just didn’t know what and after my own google search I found the EM disease and I felt very strongly that I had this. I told the vascular guy but of course he had never heard of it. He said I should try to see a derm, the first one I saw it was total waste I was in there she came in asked what was going on and then asked to see my hands and was like well it’s not happening now, I said I know it comes and goes all day I have pic she was just so uncaring and looking at me like I was wasting her time I just said nevermind and left. after more searching I found dr nguyen she was so sweet and so nice she listened to me and looked at all my photos looked me over up and down placed my hands in warm water which set off my EM and said yes you do have EM. I to have had a fusion in my cervical spine c5, c6, c7 its been about 4 years ago now and seems like ever since my symptoms became worse and more frequent. Not sure if it’s related at all or if it just decided to become worse suddenly. I flare in my hands the worst and then my feet so if im not at work im barefoot all the time. also my face neck and ears and upper chest and upper arms now. would love to talk with you I know how hard it is to live in 117 degree heat and suffer with EM.

stay cool