I have been following this forum for several months sharing in the struggle and frustration of this difficult to treat condition. I’ve had EM for almost 6 years, but only diagnosed 5 months ago. It’s mostly in my feet, but other areas as well. I have the typical food triggers: spicy food, chocolate, some types of alcohol. Stress and especially lack of sleep is a huge driver of my pain. For the past 5 1/2 years I was told I had Idiopathic Small Nerve Fiber Neuropathy. I do believe I have SNF, but I clearly have all the symptoms of EM. Although the Gabapentin that I have been taking during this time might have been helping a little, (I not even sure if it has), it hasn’t done much. Lots of supplements, alternative medicine with Zero results. I’m going to share what has helped me recently in the hope that it will help someone else.
The 3 things I believe are providing improvement for me are 1) Stop exposing feet to cold water/air. 2) Antihistamines, 3) LDN
For those of you who could not do Bob’s Protocol, I hope this will be encouraging to you. I had to stop BP after day 11 because of increasing pain. I was very disappointed and distressed because some of the pain continued for 1-2 months after I stopped. Hot water didn’t help, but stopping all cold exposure did. (Chilibains from the cold exposure simply added another layer of pain on top of my EM). Shortly after starting this, I was able to wear shoes more often, and my chilibains disappeared. I did my usual 2 mile walk , not in sandals, but in shoes and socks. Were my feet warm? Yes. Were they red? Yes. Was there pain? Yes, but it was bearable. When I finished, I kept my shoes on for at least 1/2 hour, forcing my feet to deal with the heat and cool down by themselves. I keep my house temp. at 70 degrees. I don’t flare near as much as I used to. It was crazy. For 5 years I was making my condition worse by cold exposure and I had no idea until I read Bob’s Protocol.
Histamines in foods were also causing problems, especially in my face. I simply take an OTC Claritin, and it clearly helps me, so that I don’t have to strictly follow the brutal low-histamine diet.
Having read about other people on this forum who got some relief from LDN, I decided to try it and I believe it might be helping. I take 4.5 mg once a day at night.
In addition to vitamins, there are some other supplements that might be helping: Liposomal Phospholipid Complex, NeuroProtek containing Luteolin, quercetin and rutin (Believed to be natural anti-histamines), and a histamine block called Diamine Oxidase.
I realize some of you cannot walk for 2 miles. I can only suggest do what you can, even if it’s only 100 yards. My improvement was slow and gradual.
I am certainly not healed of EM. I still have blood-pooling, so I continue to elevate my feet, but only periodically. The improvements I’ve made are significant in pain reduction and better quality of life. At one point I almost gave up believing that anything was ever going to help, so I am just urging people to keep fighting because there is likely something out there to help, you just haven’t found it yet.
You are a brave soul! It sounds like you’ve figured out some things that help you with the pain… and the walking with shoes and socks on is what I noticed most in your story. I finally have found some shoes that I can bear to wear… smiley face… altho I don’t think they are being made anymore… Merrell’s Treviso doesn’t have any seams and is nice and smooth inside… I found mine on Ebay and advertised as “never worn”… they are great for me… The other thing that I find helps me so much with the red hot burning pain is Frankincense and Myrrh NEUROPATHY rubbing oil, available from Amazon, cost about $20… It is amazing for me, and fades the red to almost a normal skin color almost immediately… I have talked about it on MayoConnect and have the same name of Hotfooted on that site… I did a 20 day experiment and related my experience there, so won’t go into it all again… Also, I’ve been on Cymbalta for a few years now, and while it does help me it also has caused me to have memory loss that has cost me a few friends… Some folks just don’t understand about how meds can impact a person’s life so much… sad… My story is a long one, and I won’t go into it here in my response to you… I just really wanted to say how happy and proud of you that your story made me… My “upper” for the day!
Thanks so much! I’m glad it lifted you up. I posted hoping some people would be encouraged because we all know of the frustration of this condition. Sounds like you have found some things that help as well. I’ve heard of the Frankincense and Myrrh, I may give that a try. Sorry to hear about your friends, I’ve stopped seeing my old friends as much as I used to. However on a positive note I have recently connected better with someone who I have known for awhile. We both have chronic pain so there is much to talk about! Hope you continue to find more things that help!
Hello again… Finally got back on here and read your story again… so glad that I did… You told about your chilblains, so I tried doing something different, too… Now I spray my feet with lukewarm water when they’re flaring, then slip on huge, loose wool socks that come halfway up my calves… This has made such a difference in my comfort… I even sleep part of the night in them, until I wake up with burning feet again… then back into the shower for a few minutes til they cool back down… sometimes I rub them with the F&M again, but not always… If I read my kindle a bit to get my mind off the feet, I can get back to sleep for the rest of the night… It’s summer now, but I’m still using the wool socks and my feet can still be icy cold… I know that winter time will require either thicker warmer socks or maybe wearing several pair at once… Heck, I don’t care! Whatever it takes, right?!! Thank you once more for your posting your experience… You helped me a whole lot…
I saw your story on Mayo Clinic Connect. Are there foods that set your pain off? You mentioned coffee. It seems when I go from 1 cup to 2 cups, after about two weeks, my pain increases. I’m stubborn, I won’t let go of my coffee. I given up so much in terms of diet. Plus, coffee improves my mood dramatically, so it’s a trade off, mood enhancement, which I really need with this condition, for a little more pain. My feet are in 80 degree standing water when I take a shower, would like to try warmer, but a little wary after my episode with the hot water treatment. My feet get cold too, but I don’t have Raynaud’s. My feet are under the covers for part of the night, but can’t seem to make it all night. I get blood pooling when my feet are down. Most of the opinions on these forums is that it is too much dilation. My doctor thinks it’s too much constriction?? Glad the warm water is helping, I know I improved when I went from cold to lukewarm. Good that your sleeping somewhat well- so important. Wish I could help you more. I’m doing reasonably well, but always looking for more improvement…aren’t we all…
Hi Jim G.,
Please excuse typos…
I logged on to post something about my recent “ improvement “ and saw your post. I have had EM also for six years since July 10, 2013. I have found improvement the exact same way as you have! On May 20 th I decided to go back to NOT taking off my shoes and socks at work and Not using the fan on my feet (my hands turn red but I have absolutely no pain in my hands -my extreme pain is only in my feet). Anyway, I also found that I can force my feet to fight through the burning and after a certain amount of time, the feet feel more numb than burning. I can still feel them swelling or bubbling as I call it but I can find short periods when the burning changes.
I notice test mornings are the worst because the feet have been shoeless all night and I do keep a fan on and now the AC at night but I never let the fan blow directly at my feet anymore. So mornings are hard as I travel to work and sit in the overheated New York City subway. But then as the day wears on, I keep the shoes and divjs on and find that I can fight through the pain and it changes.
Also, the skin on my feet were very bad over the winter. My EM doc said I had developed a chemical dermatitis from the compound creams I have used. He prescribed a cream called Biafine you can see it on Amazon but that’s nit the Rex version. It is used for people who get damaged skin from radiation. The Biafine hashelpedtoo because when I touch the soles of my feet, they feel normal. I used to not feel myself touching them if rather the feet hurt so much that touching them was painful but now I can massage the soles of my feet and it is amazing to me. I couldn’t even conceive of putting cream on to soothe them but this Biafine feels wonderful.
My doc said that he never thought the Biafine would help the EM but he now noted that with chemical dermatitis, there is the damage to the skin on the surface but there is also something that happens to vascular dilation on lower levels if the skin. He wonders if this us why the Biafine has helped. I feel like the pressure in my toes has released.
I was so surprised to see that you have also experienced improvement by doing similar things. This is very hopeful news.
I don’t remember how to email someone through the site here but if you can message me that way I would npbe hapoy to share more details with you or anyone else who is interested.
By the way, the Biafine is not covered by insurance but costs about $77.00 per tube. The tube is like a tube of toothpaste and since the EMis localized on my feet I use the cream once or twice a day and I can make it last 2 weeks. It is an emulsion not a cream.
Best,
Jordy
One more thing! I just noticed that you posted your post on May 20th, the exact day I first felt my improvement!
Jordy
That is good news! The Biafine sounds interesting. I’ve been thinking about adding another medication because although I’ve had improvement, my pain level and lifestyle is still not as good as I would like. Effexor would be my doctor’s 1st recommendation. Someone on this forum said that it addresses the dilation/constriction problem better than others, but I’m hesitant because I don’t want to be on multiple meds. I would like to go on a mission trip to Haiti, but don’t think that would be wise, since there would be no way to escape the heat. I wish someone made a shoe that had cooling mechanism. I can walk in the heat, but I need at least 45 minutes with my feet elevated with a fan to get them to cool down afterwards. I was hoping that stem cells at some point would be able to help this condition. Seeing other people improve is encouraging. I’m confident this will continue as everybody learns more about this condition.