Has anybody try this,if you did any results?
Capsaicin
Capsaicin cream (Zostrix) has been reported to relieve EM symptoms.[28]
Based on these reports, some doctors treat EM with an 8% capsaicin
patch (Qutenza).[29] The patch is administered with anesthesia for sixty to
ninety minutes and helps desensitize the skin’s heat receptors, which may be
over-sensitized in some cases of EM.[30] This treatment may provide lasting
relief for months or longer.
Lidocaine and menthol
Some people with EM have found relief using lidocaine patches
(Lidoderm).[31] Another option is a menthol product like Biofreeze gel or
spray, which can induce a sensation of cooling.
Please see my previous post, I have seen great results with the regular pharmacy high potency cream and applying it everyday. Serotonin (5-HT), TRPV1, and Thermal Hyperalgesia - #14 by Machel
See the end of this thread as well:
I cannot speak to the other treatments mentioned, I can only say that Biofreeze made mine more painful!
It did nothing for me except aggravate my skin.
I could not tolerate it on my feet. I have found a soothing CBD salve that works to calm the nerve and burning pain.
It is amazing stuff!!
For those saying that capsaicin cream caused skin irritation and increased burning, it is supposed to do this. The use of capsaicin cream for the treatment of erythromelalgia involves desensitizing TRPV1 thermo-gated pain receptor channels. There will be an increased period of burning regardless of whether capsaicin cream is beneficial to your EM. I had an increased burning sensation for about 3-4 weeks when I started using the cream, with the first week causing very intense, near constant burning. After a month of continuous daily use, the burning stopped and so did my flares. During these burning weeks you will be uncomfortable but the idea is to desensitize these TRPV1 channels with a combination of applying the cream and exposing your affected areas to heat, walking, exercise, hot showers, etc. It is very similar to Bob’s protocol in that it leads to an increase in symptoms temporarily but has been proven in many scientific papers and journals to desensitize these channels by temporarily over activating them and then eventually permanently desensitizing them.
With that being said, if you are looking for a cream to provide instant pain relief, looking into lidocaine, CBD, and the many other pain relieving creams might be worthwhile. Capsaicin cream is an intense treatment but can be beneficial if you stick with it and will not serve as one of those immediate relieving creams, but rather it will potentially decrease or eradicate your flares in the long-run, posing as more of a treatment based cream rather than a symptom based cream.
6 weeks of hell and 0 relief. But we are all different, as you know.
Exactly and now you know that it doesn’t work. Finding stuff that doesn’t work is just as important as finding stuff that does work. It narrows it down over time.
I wonder if - in cases where the “problem” is more proximal than TRPV1 eg - topical capsaicin would be less effective and possibly hurtful. For example, someone with a sodium channel mutation - I don’t know if they would get benefit.
I do think every treatment is a risk, esp. if there is some sensitization that is necessary (intention for desensitization).
I have a compounded topical with benzocaine 20% , lidocaine 8%, tetracaine 4% that on avg lasts around 3 hrs. My derm said I could apply 3x /day. For me it is the strongest out of all the topicals I’ve tried (ketamine made me worse). I can actually feel cold after applying - my doc says it shuts down the thinnest population of nerve fibers (heat sensing) so other populations of nerves (I’m guessing cold sensing) might feel overemphasized.
I agree that it can make someone worse but that goes away (in nearly all cases). I have tried at least 5 things that made me worse, they all got better after I stopped those treatments. I’m not sure as to what you mean by proximal. Proximal would mean that it affects you away from your extremities, ex having EM on the chest. Do you mean systemic? TRPV mutations are systemic, not localized. Capsaicin does not fix the mutation just as lidocaine does not fix a sodium channel mutation. They both merely suppress the overactivity that is being caused by the mutation, putting it back into the dormant state that it was in prior to being symptomatic.
I meant downstream (in the pain pathway), sorry. So if someone calms trpv1 and / or depletes substance p, someone with an inherently overactive sodium channel might still be getting pain signals to cns
If someone has overactive trpv1, then blocking sodium channels would (in theory) still block the pain signal.
I’m glad none of your treatments made you permanently worse. I appreciate your viewpoint but unless there are more data points would still categorize topical capsaicin as one of the riskier treatments for em
Yes, I completely agree that sodium channel blocking is a more broad way to alleviate pain.
I did, however, preface more than once that capsaicin is an extreme treatment by mentioning the intense burning that it will cause and by ending with this [quote=“joeshmoe, post:6, topic:4140”]
Capsaicin cream is an intense treatment but can be beneficial
[/quote].
The reason why capsaicin works could very well be a similar mechanism to Bob’s protocol, which has helped many, so I do believe that it is a worthy treatment, especially since it is topical and not systemic and has published articles on its mechanism while bob’s protocol does not. Trying a strong systemic medication, like mexiletine or gabapentin, poses more of a risk than any topical cream. I did put quite a bit of research into it prior to starting and saved them in my EM bookmarks folder.
https://pmj.bmj.com/content/postgradmedj/70/829/841.full.pdf
Monkey -
I’m curious if you or doctors had any idea why capsaicin topical for 6 wks wasn’t helpful for you? The only ideas I have are: a different dose/application schedule would have been better (eg qutenza), centralized pain, or sodium channel mutation.
Thanks!
I wanted to come back to this thread - I tried topical OTC capsaicin one side for several wks and it was sort of promising for external heat tolerance but the night flaring continued to be worse on the treated side. In theory - it seems like something that should work! Mexiletine helped me tolerate the capsaicin-induced flaring much better (I gave capsaicin a try at the start before oral medication). I had asked my derm: would capsaicin work even if the problem is too much inflammation irritating the small fibers? or if the problem was not in the axon ends, but more proximal eg in the nerve roots (eg C2/C3 in cervical spine for ears)? He said he didn’t think it would matter, in the end.