Secondary EM Survival Guide (Book on Amazon)

I just downloaded the "book." Yes downloaded all 21 pages (with big print and each page is but 1/2 page)...... Obviously took but a second. It is really about an 8 page book.

My Book Review:

The solution:

1. Take fish oil and magnesium and Vitamin B.

2. Stop using all cold to keep your feet cold. Use only a fan and eventually wean yourself from the fan. Start taking warmer showers and when you drive down the road turn on the heat and place your feet under the heat. Acclimatize your feet to a hotter condition. Eventually climb in a hot tub.

3. Place Capsaicin cream on your feet. Either buy your Capsaicin in the cream form or make your own......Recipe included.

What he is saying is that this gets your feet used to higher temperature and kills off some of the nerves. He says new ones grow (I have read that nerves never grow back) and they are more in tune with your new life style. Continue doing this and it will put your feet back to "normal."

He says that people in Alaska (me) and Canada have more problems than people in California. He is indicating that it is best to keep your feet in "normal" 70 degrees and above lifestyle.

Maybe, just maybe he has something. I really need to heal my wounds and scabs before I could try. Please, please others try this and let all of us know. It may work.

As my feet are on a cold water bag, I will contemplate the book. BUT want to say....he really may have something. We do know that there are some using capsaicin in treatment....2-5 times and people have gotten better. I would NEVER use the word "cured." He used that word several times.


Thank you for letting us know about the basics involved Jim. As Nel stated in the other post there wasn’t much shared. I agree that using the word cure is really pushing it when there is no cure and especially no one cure for all. I am very happy for him that he had found a way to get some relief. As always I want to stress the importance of checking this and Any treatment with your doctor before trying. Medication type treatments are not the only types that need to be discussed with your doctor first because lifestyle changes can also effect you for better or worse. It sounds terribly painful to try if you ask me. I guess if I knew 100% it would work it would be worth it but the thought of torturing yourself for months and it not working definitely makes me think twice about it.

I hope your feet get to feeling better soon Jim.

Thanks Jim.
I was hoping someone would let us know what these stages towards recovery were! Will’s post was edited by moderators because he was asking for money in exchange for sharing his good news and because he claimed that his book could ‘cure’, giving false hope to people willing to clutch at straws. Sick people will do anything to stop the pain which is why people who produce these guides to a cure make good money out of it.
I would be interested to hear from people who have already tried elements of Will’s 'solution’
Those three supplements suit some and definitely not others. I would only be able to take one of them due to my other conditions.
I think there is something to be said for not keeping one’s feet permanently as cold as possible, especially for those of us with Raynauds but the thought of putting flaring feet under the heater in the car makes me feel ill. Or is that just a stage we will get to once we have stopped using fans? Does he say how long each stage might take?
As you say, people have used capsaicin cream with some success, others have reported that it made flares worse. I read that there is some regeneration of nerves following its use but not complete.
So nothing new there except the ordering of the process. Only time will tell.

We would like to remind all members that our community has rules, and one steadfast rule is that advertising is NOT allowed. Postings should not attempt to promote or sell products or information , including things which might be beneficial . Ben's Friends mission is to provide a safe , supportive, and informative community for erythromelalgia sufferers . All information must be gratis and imparted without discrimination. The moderator team will delete any advertising posts ,and remove all spammers from the living with erythromelalgia support network. If you have any questions ,or would like further information about our community guidelines , please message one of the moderators . Thank you.

I echo my colleagues comments, and would like to thank Jim for sharing the mysterious details .In my opinion, NO great revelation regarding supplements in terms of fish oil ,magnesium and Vitamin B ,or trying to maintain a steady atmostphere ie: acclimatisation. We have numerous posts on these topics and said practice used by majority of our community . To my knowledge the use of capsaicin has been pretty unremarkable in the management of EM pain, more often than not exacerbating flaring. I have tried it myself and it burns ! If you have scabs, sores or ulcerations please avoid . Capsaicin is a topical treatment , which we have discussed at great lengths (pros/cons) in past forum posts. Geographical statements necessitate validation via epidemiology . As as a community member , Will can most certainly share his information in the discussion forum or his profile blog - but with the proviso that it is free of charge and he makes no unsubstantiated claims. If he has gone into remission( there is no known cure) - it is a blessing. I shall look forward to hearing further news. I am sure we all wish him well.

I have talked (email) a woman that had the capsaicin treatment and was flare free for a couple of months. Then she had another treatment and was flare free for 5 months. Then believe she had it again but it was another 5 month flare free. So I have discussed the capsaicin treatment with an EM person that did have a success. Will it help everyone. Of course not. That is not the history of EM.

"if" this young man has gone into remission?????? You believe he is a liar? Why would you believe that?

The comment on unethical and unscrupulous..... I assume you mean unethical because Amazon is charging $6.99 for this book. Less than the cost of two cups of coffee. And of that amount I suspect he receives less than $1. If you want to talk unethical talk about the supplement industry. Unscrupulous????? And how did you come to that conclusion? Of course you are entitled to your opinion.

Maybe as you wrote you were experiencing the same pain I am experiencing right now???? Did you buy the hardcopy or the online copy?

it takes time but i have noticed it works i have been doing this for a few years now. i noticed that the pain is at the same level but i am able to ignore and handle it better

I can see how for some people and it depends on the pain level and type of pain can learn to ignore it but no one should have to live with pain and it should still be treated and hopefully find something that actually makes it stop or at least not hurt so much.
I certainly have pain I can ignore as I am sure most here do but there is also pain that I don’t believe possible no matter how much training and dedication to learning to live with it can be ignored or pushed through. Not to mention the swelling that accompanies the pain can cause further damage if left ignored or pushed through. I am not sure but I wouldn’t be surprised if this swelling I can get where my feet don’t fit flat on the floor anymore may be the culprit to some of my other issues. There is a reason that swelling hurts so much. It’s because it’s an indication something is wrong and it should be addressed ie stopped so it could be dangerous to just ignore it and continue to let it happen.
I would definitely talk with a doctor before trying the just ignore it trick but it is good practice to not focus on your pain if you can help it.