Hi guys,
I posted here before about my use of mexiletine. Unfortunately after 4 months of mexiletine, even when increasing my dose to 600mg per day, I got no relief. However, I had minimal side effects so I was happy that I tried it.
My dermatologist has now prescribed me capsaicin cream. I have to apply once a day for one week, twice for one week, increasing to four times daily, Then I am to start using lidocaine patches once a day also.
Has anyone here tried capsaicin? Any advice?
I use it all the time and think it’s one of the best things for my EM. I’m on my feet 10+ hours a day and it still holds. Some tips: use gloves when putting it on, be active when it’s on. It will burn but it if you aren’t active and use capsaicin cream, it’s useless. The cream will desensitize your nerves but you need to establish a new active baseline when using the cream. It will burn at first but over time your feet adjust.
The Mexiletine does not work for me either. The creams have never helped much either, but everyone is different. I do get a lot of relief, enough so I can get some sleep with the lidocaine patches. Good luck to you.
Hey, thanks for the reply and tips.
Firstly, my hands are actually my main affected area so no point in gloves!
I use it on my hands and feet. I’m actually get a surgery on my foot from a running injury so being super active is quite hard atm! However, I will use it before I take my dogs off for a walk every morning and I’ll try to be generally more active.
Can I ask, when did you start to notice that it was working?
My feet couldn’t tolerate capsaicin, irritated and made them worse. Topical that helps is voltaren (diclofenac gel).
I noticed it after a week or so. My feet would burn a lot from the cream initially but one day I noticed after a long walk (on a hot summer day) that my feet burned from the cream but looked perfectly normal. It seems like the cream distracts my feet from over reacting to heat and other stimuli. Sweat makes the cream burn more which also helps desensitize the nerves. There are a few different mechanisms of action of capsaicin cream and I’m not sure which one helps me but it is the most helpful thing I’ve ever discovered, more so than the mexiletine. I started using it during the Summer and forced myself to walk, run, and hike. The burning at first was tough to handle which is what so many others say but the long-term benefits have been absolutely astonishing for me. I think too many people stop treatment too early and don’t really give it a chance. It is meant to burn and the nerve desensitization is done through the burning of free end small C pain fibers. Capsaicin isn’t a pain relieving treatment but a method of attacking the problem, kind of like fighting fire with fire. My mindset was that I’m totally fine with dealing with the short-term pain of the cream it if provided long-term relief and let me get my life back. It did just that. I’ve done a marathon since then and am training for an ironman currently and still put the cream on before I go for a long-run as crazy as that sounds.
My mom could not use that kind of cream on her feet. I guess it’s dependent on the type of EM one has. Results can vary. My mom gets some relief from Lanacaine cream on her feet, or so she claims. The main thing for her is chilling of the feet. She mixes her cream with a non-greasy and non-gel cream as well. Gels will often retain heat so finding a good base cream if you looking for more than just a cream will be essential perhaps if retaining heat will make it worse. For mom a Gel like a gel cooling cream retains heat and won’t work. For mom a lanacaine gel will not work she needs to use a lanacaine cream. For mom a cream that retains humidity and heat will make her flares worse because it’s like putting an insulating blanket via cream on the feet. This is how her’s reacts, you’re reaction may vary. Lanacaine has numbing agents so it’s likely working on calming down the nerves. It has the same basic ingrediants and action as a lidocaine patch. A lidocaine patch will retain heat however where-ever a patch is put on the body. Mom also had someone try to wrap her feet with a “zinc Ointment” and that resulted in an extremely bad flare and hot reaction and the wrap had to come off. That was a foot doctor who just didn’t know any better and who knows? Perhaps a zinc ointment works for other patients who have some foot ailments, when they tried that on mom. So for my mom having the feet be able to breath and not add heat is an important consideration for her version of EM.
Lidocaine topically may act much differently of course from interveneous Lidocaine which is being used to change heart rhythms. Lidocaine applied to the surface should have an effect of reducing nerve ending activity. I would speculate and guess if the nerve activity and pain is from the nervous system or autonomic system reacting to some other nerve imbalance away from the site, that the application of creams directly to the area, might not be treating the nerves or chain of events and they might have less effect. As some have stated in medical literature EM can be caused by damage in the nerves anywhere along the pathway from the feet to the brain. The nerves in the feet can be perfectly normal and small fiber nerves may be completely without fault or flaws and you still might have burning foot syndrome symptoms. This would be due to other problems and applying cream or some kind of numbing agent to the feet in those cases, might do little to solve the problem. This is from my own observations and from what I have read on these boards. I’m not a doctor or medical professional and only a caregiver for my mom’s version. So don’t take my comments as firm medical advice of course. . . the usual disclaimer applies. This is just my opinion from what I’ve seen in one case (my mom’s) and some stuff I’ve read.
Topical lidocaine has the same mechanism as IV lidocaine and the oral tablet Mexiletine. They are sodium channel blockers. Obviously topical lidocaine isn’t going to reach the systemic circulation so it will just block sodium channels on the small fiber free nerve endings. Mexiletine and IV lidocaine reach systemic circulation and thus can act as a class IB anti-arrhythmic on cardiac nerve tissue but also systemically on the nervous system which is what makes it useful in genetic sodium channel mutations.
Capsaicin cream also has weak sodium channel blocking activity through the non-selective TRPV1 channel it blocks but most notably depletes nerve endings of substance P, one of the primary neuropeptides in charge of pain. The heat of the cream also burns free nerve endings. When they regenerate, symptoms typically return. However, if the feet are trained to develop a baseline of high activity and higher temperatures while the nerves are regenerating, there is room for retraining of the area being treated. This and the combination of depletion of substance P and TRPV1 blockade are what make it useful. It is also very well absorbed in the skin and is not detectable after 30-60 minutes or drying so it wouldn’t cause any greasiness (I can vouch for this, I’ve been using it for two years now). Capsaicin cream is actually very widely used in the medical field and I had a question one of my licensing exams about it It is a very underrated, safe thing to try, if one can deal with the “heat” from the chili peppers. And it’s cheap, easily obtainable, and is sourced from natural products aka chili peppers.