Possible new treatment for EM?

My neurologist has diagnosed me with peripheral polyneuropathy (likely a non-length-dependent small fiber neuropathy), and thinks that is the cause of my erythromelalgia-like symptoms. I was trying Namenda (memantine) for treatment of my intractable constant headache and/or my (seperate) migraines…and it has reduced my flares by 70-80%!!! I went off of the med for while because I wanted to try other things for my headaches (nothing has really worked), but once my neuro Dx’d me with the neuropathy, he said why not try the memantine again…and it is working!!! Just wanted to pass this along since one of the suspected causes of EM is small fiber neuropathy!
The weird thing I forgot to mention is that memantine isn’t even used for neuropathy…my neuro doesn’t know why it works, but it is a rather benign medication, he says, so it might be worth a try for other patients with flushing/burning symptoms. IDK if anyone’s doctor would be willing to try them on memantine from one anecdotal success story, but I figured if anyone feels desperate, they could try suggesting it to their doctor.


Yes, EM can definitely be caused by neuropathy and in particular small fibre nerve damage. Glad that the medication worked for you. They blamed mine on that for a long time and nothing worked then it was found the real cause was rheumatoid vasculitis, which is why I had no success with the medication.

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Thanks for the tip. It’s 8 pm which means my nightly EM flares taking off. I too am a migraine sufferer. All the better justification to request Namenda when I see my primary doc next week. Hope perseveres!
Will be in touch,
Elis CES

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memantine is a NMDA blocker antagonist. Like Ketamine, it may be used for advanced CRPS therapies. Ketamine cream may work for some EM suffering patients. The memantine being the same kind of treatement may also help some. It makes sense.

I wonder if you had any other symptoms that could be CRPS overlap in the symptoms and if some other EM suffering patients will have a lot of symptoms that are also in CRPS. If there is an overlap of symptoms, perhaps the same cause (glial cell overactivity) could be happening between those who suffer in the same way. Check up on youtube the “Budapest criteria” for CRPS. I wonder if many EM patients have those same symptoms. Now I’m not saying this to state EM is a form of CRPS, but the symptoms may have overlap in some cases and I wonder how many may have overlap.

What is interesting about some CRPS patients is they don’t have any damage at all in their nerves. The problem is Glial cell overactivity for some of them. And some CRPS patients have EM for a year and then it resolves and moves on to other stages of the disease. (Often worse.)

I chatted with one patient who has CRPS and he said he had burning feet a lot longer than a year, so that may only happen to some CRPS patients.

This guy I chatted with in a waiting room when we were waiting to see a doctor mentioned he wasn’t going to try Opiods, or ketamine or many drugs. He claimed he was suicidal but would “hold on” until his daughter was old enough to live life without him. I found it ironic that he was afraid of opiods, well maybe not to ironic, but also ketamine and NMDA blockers. I think if I was suicidal I’d be trying those medications and not try to tough it out. That guy I chatted with had really bad pain.

It affected him really badly, and seemed to be worse than any EM case I’ve heard of.

NMDA blocker/antagonists can help some and will likely be tried if you pursue them and opiods can’t work well enough. But you may need to go to a pain clinic to get on that kind of test.

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That info does seem to shed some light on why memantine helps! I will mention it to my neurologist since he seemed interested in figuring out why it works for my symptoms. Thanks. :slight_smile:

WOW WOW WOW. Thanks so much for sharing that info with us.
I have NOT been tested for small fibre neuropathy. The EMG/NCD does not test for that. I fail to understand just ‘why’ my Neuro hasn’t done testing for small fibre,but I shall ask him about this when I see him…not 'til Oct. 5/2017!
In the meantime I will be having MRI’s of the complete spine…lumbar/cervical & brain. So, it may be worthwhile to see what if anything turns up in the results.
I have not been diagnosed with EM…but the Neuro said in his consult note to my GP that he suggested I take 81mg of aspirin per day for “possible EM”. He did NOT say 'possible EM" to me., which has p*ssed me off a little. He DID say that possibly the vessels are opening/closing…which is when the suggestion of aspirin came about. I will not take the aspirin on a “possible”.
He does not know my history.
I too get headaches, at the back of my skull.
I have spent thousands of $ trying to find out what’s wrong with me. My feet will burn but it’s not excruciating…the bottoms will turn dark red, but the toes do not turn red. Sometimes when there is redness, there is no heat felt to the touch. I do not have swelling of any kind.
I’m at wit’s end with it all…somehow somewhere there must be an answer, & I need to find that answer.
Thanks again for sharing.

Hi Mexican rose

Are your symptoms getting worse as time goes by ?

Or just about staying about the same

Hi…My symptoms are staying much the same, but I’ve noticed over the last day or so, I’m experiencing some slightstinging sensation in my upper legs.When I see the Neuro in Oct., I’m going to ask about small fibre. I fail to understand why they seem to do EMG/NCD knowing full well it doesn’t test for small fibre. I don’t know if I mentioned this to you or not, but SOLARCAINE really calms the burning sensation. I described the burning, not as pain because to me pain is like a searing, stabbing sensation. I describe MY burning as a mild sunburn. I only use the Solarcaine when I absolutely must. The Neuro was very interested in that, & asked me to bring the bottle with me to the next appt. I suppose he never thought next time he was in the pharmacy to look for it, then he could read the label right then & there. lol lolSeriously…Solarcaine does work…at least for me. Have a good evening.Mexicanrose

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Very Interesting on the solarcaine!!

Definitely will try it :grinning:

Yes, my original Neuro was rather surprised that something OTC like that would help with the burning. As mentioned in a previous email, the current Neuro was very interested which is why he asked me to bring the bottle to the next appt. He wants to see the ingredients. If you’re going to try it, don’t slather it on for the first application. Try a little at first, then put on more if you need it. Straight away, I felt a cooling sensation, then the burning subsided. By the way, on an article on the internet (sorry I can’t remember just where) it mentioned a compound cream made up of 1% amitriptyline hydrochloride @ 0.5% Ketamine hydrochloride, which is applied 2-4 times/daily. According to the study, 75% of the people experienced approximately 90% improvement, including a 17yr old girl who experiences excruciating pain, redness like you wouldn’t believe, & she was missing a lot of school because of her condition. When using the cream, she is able to participate in the sports events at school & do most things she couldn’t do before using the cream. If I understood the article correctly, this compound was created by the Mayo Clinic. I’ve made note of the compound, & will discuss this with my Neuro, but I don’t believe I’m at the stage of needing this just yet. Very deep down, I don’t think I actually have EM, but do believe there is something irritating my nerves.Have a great day!!!Mexican Rose

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I had one neurologist give me a prescription for that compound creme you mentioned
It’s a handmade special thing

You can’t just get it at any pharmacy
But I was so scared to try it
Lol :joy:


I was in so much pain when I saw him I couldn’t bare trying something else and the creme increasing the pain

I should try it!!
I think there was lindocane in it as well
And I’ve had horrible experiences with lindocane patches previously suggested by doctors

The best and most valid way to diagnosis small fiber neuropathy is with a skin biopsy . Some large neurology practices can do this but it is usually done at a University hospital. This test is relatively painless and definitive for diagnosis of small fiber.
I was told if you have small fiber neuropathy than the red burning of feet etc. is NOT EM but small fiber neuropathy.

I don’t think it is true that if you have SFN then the burning is not SFN. My neurologist, physiatrist, hematologist, and rheumy all say they are often comorbid. While they are often related, they are not necessarily the same thing.

Wanted to give a kind of quick update. Mom tried the pain blocks in her tibial nerve area only a few blocks a few weeks apart. She also tried ketamine cream with the amitriptyline. That mixture gave her bad side effects but the amitriptyline seems to be related to the activity we saw with Risperdol in the way they both antagonist serotonin.

We know in my moms case Risperdol caused my moms burning foot syndrome and some testers reported with the cream mix like those in the mayo clinic they experienced a mild warming feeling possibly from the amitriptyline in the mix until the ketamine kicked in. So we tried just low level ketamine as in the care of my moms condition the Amitriptyline may be bad for her like Risperdol was. If you get burning symptoms from a medication by all means stop it as soon as possible and call your doctor. Please don’t mess to much with medications if they start to cause your feet to burn because some of them may trigger permanent decline or damage of some sort. Just my friendly opinion but it’s not a medical doctor opinion so seek more guidance and don’t take my advice as medical advise but do more research and find doctors you can trust. As far as doctors I have to say most of the ones probably all of them we could trust if they knew they were over their head or could not help they would say so and we’d move on.

Now we stopped the ketamine cream after a for days testing it as well. It was super effective for mom pain going down from level 7 constant and 10 flares down to 2 or 3 so low she didn’t notice the pain. But the ketamine caused her to be less steady in her walking and gate and it seemed to cause her more problems with mobility so ironically we had to stop that. And this was low dose cream 0.5 percent.

Now lately that is to say the past few months mom has been getting nerve blocks in her feet because she wanted to try then again and we had anothe foot doctor come in but he gave the injections on the top of her foot instead of beer the tibial nerves. Results were supposedly better for mom and she liked having the shots and wanted more. But she is still having flares and doesn’t really get out much more she nah be doing things more when she has to because of fatigue i can’t keep up with her needs and demands. So she will do more but ironically she seems to not notice the pain and do more but when on her feet more she has worse flares. It’s hard to say if the temporary injections are helping or not. She has a few open thin spots where she bleed from her toes and the foot doctor doesn’t like to see that and is afraid of infection.

Now recently another kind of bloody patten that looks like a pimple or bleeding spot appeared but it wasn’t on her foot or toes where is where those things usually are before she heads up. Now this was a bit of a concern for me and mom thought it might be a sign of infection. She’s old and the polls and age may cloud her self diagnostic judgment so who knows what caused that and it’s rather minor.

Sometimes people with CRPS develop sores over parts of their bodies in response to possible nerve damage. And I don’t recall the details but those CRPS folks with type 2 are in a very bad way with their disease. I don’t know if new small pimple like wounds are an issue but it may be enough to stop the injections of the numbing tests in her feet. Long term numbing could be an issue and her old neurologist thought permanent numbing was a bad thing as it could cause all sorts of bad side effects.