My mom has had EM since 2002. She has had more than one flare every day since her onset of her disease. She didn’t have Small Fiber Neuropathy but has large fiber neuropathy. She developed EM as a side effect of taking Risperdal. She also had minor EM like flares which were not painful back in the middle 1990’s when taking another drug called Xanex (supposedly for “anxiety”) Her minor burning foot symptoms resolved back in the mid 1990’s when she stopped taking that other nerve medication.
People who have EM often have some kind of Nerve damage. It’s a pain that can be from nerve damage not even close to the site of the pain.
Vascular, auto-immune, and nerve tests can be done. My mom has small fiber neuropathy like symptoms which include exited and very sensitive nerves which are like typical SFN patients which may experience great pain from a relatively small touch. Her condition might be sort of like a condition where many nerves are affected and numb and the brain may be “making up for” (my term) lost nerve connections kind of like a short circuited audio knob which goes from level 2 sound to level 8 abruptly. She has a small area of temperature where her feet feel comfortable. She can have a flare and have skin look hot and red but pain is accompanied with it, where a normal person might feel normal skin temps she will feel great pain. So the sensitivity she feels especially during a flare is much like over-sensitive sensations that some SFN patients say they have.
I read a long time ago, but I haven’t verified it lately. I read this on some old forum like thread that Em is often caused by the destruction of the AXIOM or core of the nerves dying and it’s exactly opposite of what happens to people when the nerve sheath dies (which causes Multiple Sclerosis).
I don’t know if that is the case for most or just some of those who have EM. It may be the case that Axiom nerve damage is related to some cases of EM. There may be finer granularity definitions for diagnostics and nerve damage (like SFN, Large fiber Neuropathy and autoimmune, as well as subsets of them) which cause EM.
Some early comments I read a long time ago are not valid anymore. Some used to say nerve density tests showing SFN and loss of small fiber nerves in the bottom of the feet is the only way to diagnose EM. That is not the case. That used to be a way mentioned (I think I read it on an old UK site somewhere.)
I even have an old doctors note from one intern which thought that was the way to diagnose EM, and a negative result for SFN was his reason to think my mom didn’t have EM. But that was only one doctors opinion in notes from an old visit to a hospital complex in Detroit. And there were notes from many other doctors and actually different departments were debating in a meeting what her diagnosis was at that time. That was quite a long time ago back in 2005. I think it’s interesting to note at that time at least some studies were trying to say SFN is the only cause of EM. That is not the case anymore.
I have recently been dx with SFN confirmed by skin biopsy and I also have EM. My symptoms started in 2010 three months after having neck surgery for cervical stenosis. I diagnosed myself with the EM 2 years ago when my hands begin to flare like my legs had been doing for 7 years. I am still trying to find someone who is willing to invest time in helping me get my pain under control. What is sad is I am a nurse practitioner and the lack of motivation from primary care providers is unbelievable. I also have some form of raynauds or maybe it is just neuropathy but the cold hurts as bad if not worse then the heat.
Hey Kelly,
I’m sorry to say this but, I agree.
PCP’s maybe great for your common ‘run of the mill’ medical situations, but anything outside of the norm and we end up having great difficulties.
I’m in Australia, here we have General Practitioners (GP’s) then we have physicians, then specialists. A physicians role is more of an investigatory role to establish a diagnosis before being referred onto the designated speciality. For many of us with rare conditions we can often be referred on to specialists by our GP’s only to be told that the specialist we’ve been referred to is the wrong one, resulting in us having to start the whole process over and over again. For those of us with multiple and seemingly unrelated symptoms this can be an ever revolving door until we find that specific specialist we need.
To lessen that merry-go-round I would recommend you try and find an investigatory physician or a medical advocate. Someone to do all of those tests and diagnostics prior to being referred onto the specialist you need.
I hope it helps.
Merl from the Moderator Support Team
Our conditions are similiar… I was diagnosed with Fibromyalgia many years ago, then hot burning feet began followed by neuropathy… and now I am recently diagnosed with Diabetes type2… but after seeing the nutritionist 3 weeks ago and having an awful burning flare, she had me try some Frankincense and Myrrh NEUROPATHY drops mixed with a small amount of lotion… the relief was immediate for me… She said many of her patients swear by it and won’t be without it… Until trying those drops that day I had been unable to use ANY kind of lotion on my feet… Believe they were awful to look at, too… Now I use 12 drops with about a tablespoon of lotion on my feet every morning and am able to walk off and on in my house all day… I’m sleeping through the nights and my feet only begin to flare up some by the next morning… I put the stuff on my feet while I’m still in bed, lie there a while to give them some time, then get up and have coffee and toast… It’s available by ordering from Amazon, Walmart, even on Ebay… cost is about $20… It doesn’t work for everything, but it’s definitely helping me return to an almost normal life… I hope it does this for you, too…
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I have lost the hair on my calves from neuropathy and EM… and the skin has become smooth and shiny on feet and lower legs…
Wow, thank you. I will definitely check it out. Does it have a brand name or is it just Frankincense and Myrrh neuropathy drops?
Kelly03, check it out on Amazon… and that seems to be the brand name, since it’s in bold letters across the front of the box…
Frankincense and Myrrh NEUROPATHY
I hope it helps with your small fiber neuropathy pain and erythromelalgia… It has made a dramatic difference for me…
Also, my doctor just told me about a couple of other topical meds that I can try if this doesn’t continue to do the job… I’ll have to look up just what those are and will post them later…
I had biopsies done that showed small fiber neuropathy in my left leg. I developed Erythromelalgia in my left foot. This all seemed to happen after a fall at work where I fractured my left hip. It can be unbearable at times; normally at night. My foot will burn and itch with tiny blisters. My skin peels off and feels very tight. I take gabapentin 100 mg x3 dly. I’ve tried prescription lotions, Vaseline and many over the counter lotions.
I keep getting a negative genetic test result but I have a postive skin biopsy! And all the symptoms of the genetic mutation!