Lions Mane

General
1

Has anyone here tried Lions Mane? It is a supplement made from the “ Lions Mane” mushroom. There is a blog from a fello EM sufferer. I don’t know is she is a member but if you Google “Erythromelalgia Recovery “ you will see her posts from her blog. Everyone’s case of EM is different. My doctor tells me it is a syndrome and it seems to express differently in each if us. Some similarities but in a way unique. This woman has adopted a special vegan plant based diet but she says that the addition of the Lions Mane has perhaps made a big difference. She posts photos of her feet after the same 3 mile walk under the same conditions from April 2019 and from July 2020 and her improvement is remarkable. The same for the photos after her shower.

I have also had the EM for the same 7 years as she has and my “ progress” is not really much. If there has been any, maybe the burning seems more to the surface of the skin and not as deep in the tissue but on the flip side, the skin on my lower legs looks all different and I have weird red patches that we attribute broken blood vessels from when I force myself to keep my shoes and socks on from 10-3 each day. I am working from home now because of COVID-19 and it is much harder working from home because my room where I have to put the computer set up is my living room/ dining room and I cannot regulate the temperature.

Anyway, I am thinking of trying the Lions Mane it is effective in some studies with nerve growth or regeneration.

Have any of you heard about Lions Mane and. WHat do you think.

2

Is there any basis for why it would be an effective treatment for EM?

3

Sorry, I just saw this from you. My EM is due to Nutritional Neuropathy because I damaged or ate through the nerves in my feet. This woman was told about lions mane because it has nerve growth promoting possibilities. Her improvement has been astounding. My doctor feels that since it is a supplement and has no known side effects that trying it is a no lose situation. I just wanted to know if anyone else had heard of this supplement.

Thank you for the work that you do moderating this site!

Best,
Jordy

1 Like
4

If you try it and find it helpful, definitely let us know. I think my EM may have resulted from nerve damage as well.

5

I tried lion’s mane and it didn’t help. I’ve tried all sorts of supplements. Doc has me on 500mcg B-12/day, though I haven’t noticed any change. What seems to help pain somewhat is noni juice. I also use voltaren (diclofenac gel) as a topical.

6

I’ve been taking lions mane supplements for 1.5 weeks now, and I have also started microdosing psilcybin. It definitely seems to be helping with the pain and I can keep my feet under the covers at night now more or less.
I am still flaring though, perhaps not as much, but still flaring - however, I am grateful that the pain has reduced from what it was before.