I cured my EM-health

I cured my EM. 

You'll find below a description of how I did it, but in the interest of being thorough, allow me to disclose that I'm 39 and in perfect health otherwise. For most of my adult life I have eaten a natural, whole foods diet and have exercised multiple days per week. My body fat is under 10% and my resting heart rate is in the 40s. My blood work is so good that it makes my doctor's toes curl. I don't say this to discourage those with other conditions from trying what I describe below, but only to temper feelings of despair if the treatment described here doesn't work for you in the presence of multiple health problems causing or otherwise attending your EM. I'm probably the ideal subject for such a treatment, but I have definitely heard of cases of similar plans working for those with EM secondary to some other condition. That said, I sincerely think everyone should try this as it seems to me to be safe, without any likely long term negative consequences. I think we can all agree that it is infinitely safer than the polypharmacy approach of which the medical establishment is so fond.

What I did:

  1. On March 2nd, I stopped putting my feet under fans and/or in cool water to stop flares. Instead, every night before taking a hot shower, I put my feet in two buckets of warm water for thirty minutes, after which I took a hot shower. For the first month of treatment, I used water around 97-100 degrees; after the first month, I gradually raised the temperature weekly until the water in the buckets was 109-110.

  2. After the hot shower, making sure my apartment was at around 76-80 degrees, I forced my body to recover on its own without any aid whatsoever. I lied down on the bed until the flare was gone and then applied copious amounts of lotion. At first, the flares took hours to subside; now, I don't flare any more than a "normal" person.

  3. At about the 7 week mark, I added 30-40 minute walks midday with socks and tennis shoes on. After the walks, I kept my socks on and forced my feet to recover.

I still do this protocol and am about to transition to a maintenance dose, which I believe will simply be a hot shower every night. I no longer flare, and I can wear normal footwear in all conditions. Recently, I took a 40 minute walk in 93 degree heat and didn't flare at all. My EM was mostly on my feet, but I had a mild form on hands and ears, too. No part of my body flares anymore (I don't do anything for the ears except run them under hot water in the shower every night, and for the hands I always make sure to wash them (and dishes) in hot water).

Don't get discouraged if you don't see results after the first few treatments--give it a week before quitting. Slowly, day after day, if you're like me, you'll see improvement.

There are likely many "right" ways to do this sort of heat desensitization, so feel free to "make it your own."

I take a few supplements, but let's not obsess over that--the heat is the thing.

Feel free to ask me questions you may have, but don't be too neurotic--try this, and report your results. Or don't. I'll be thrilled if this helps you.

(No, the color of the buckets doesn't matter.)?

Thank you! My daughter isn't mobile but I'll see what we can incorporate and see if it helps. I'd love to no longer freeze because my house is so cold and yet still never cold enough for her.

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Thanks for sharing Bob. My EM has improved a lot also by using similar methodsI keep my house very warm and seldom use fans. I also take hot showers. I will have to try the buckets to see if I get more improvement. I still flare occasionally but it is so much better. Thanks again.

I think you should add the buckets, and use water temps around 108. At least 30 minutes.

Thanks Bob. I will try it.

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Did you take anything for the EM before trying this protocol? Do you take anything at all now?

Nothing really works except for heat.

I am keeping my mostly at bay with aspirin per my Hematologist and Dermatologist. I have been afraid to stop taking it.. I have thought of trying it then I chicken out, mainly I do not want to be awake all night with flaring feet.

bob548 Heat is the key, for me also...

bob548 - I don't feel like Glenda's question was actually answered. Sorry to be pedantic, but her question was "Did you take anything..." which meant she is asking about meds you took prior to attempting this method.

marsha3901 Apologies. No, I only took ALA and phosphatidylcholine. Their benefit was negligible.

bob548 - you took the lecithin for EM? Was it practitioner-prescribed or self-prescribed? Of course, in my gym-rat days it was a staple, but I don't recall seeing it mentioned around here before. Safe to presume you took the alpha-lipoic acid for nerve damage (surely not diabetes, as you said you're ridiculously heslthy)?

Marsha Kinzer I only took those two supplements because Dr. Cohen said they worked for him. The PC didn't do much, but the ALA helped. But even at that, the ALA wasn't a game-changer.

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So thrilled for you! I believe the best thing my kids and I did for our em right from the start was avoiding artificial cooling. We rode out the flares with only occasional cooling when pain was unbearable. I do believe it helped us build up a tolerance. We found cooling caused rebound flaring and made the pain unbearable when it wads away from the source of cooling.

I agree, I don't do any cooling either, no fans, etc. But that's just what works for me.

Do ya'll sleep with feet out from under the covers?

I don't. Mine are covered, no longer wearing socks to bed, but still under blankets.

I sleep with mine under the cover most all of the night, I do keep a bed fan on, running on low, and at times during the night I have to poke my feet out from under the cover.

Don't just avoid cooling--ADD HEAT!

It is hard at the beginning but now I can also walk outside with tennis shoes.

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Don't take this the wrong way. This seem very much like going on and ignoring EM, which I mostly do. And mine is only getting worse. But then again, I am also an autoimmune mess, so maybe it's not going to get better. I take the hot shower I want whether I flare or not. I wear tennis shoes and socks, albeit light socks, if that's what I want to wear. And still they persist and still the get worse. I am truly happy yours has improved. I don't mean at all to detract from your joy!! Congrats!

Every case is so individual, as we know. What works for some, doesn't for others, and vice versa.

I am a person who has never cooled and still have multiple daily flares, and progression. i don't have the gene variation. i do have other autoimmune problems.

I have also auto-immune condition (lupus) and applying heat have been a god saver for me.

My myasthenia gravis doesn't like heat as it slows down transmissions in the neuromuscular junction. But then raynauds and RA like the heat. My entire body is a big catch 22!?

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I think there is a lot of truth in this! I had the most awful facial flares past 2 winters and spent days and night infront of a fan with ice packs against my face or in the car mid winter with full aircon and water spray at my face. Relief was only temporary and as soon as I stepped away the rebound flushing was like an iron being pressed against my skin. This winter I've shielded my face using hats, scarves and hoods, 'allowed' heating on in the house and avoided the fan as much as possible. The difference is huge! Also taking 75mg of Aspirin x3 each night. x

I take 325mg aspirin with 1/2 benadryl and 250 mg vit c three times a day.. it is helping me

Don't just avoid cooling--ADD HEAT!

Do you still cool when you need to?

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I am SO happy to read this! I, too, have been powering through; the heat, that is? I have not cooled my feet for a while and am just keeping on-keeping on when I flare. My areas of flare have drastically reduced and I, too, am healing! SO VERY HAPPY FOR YOU!!! ?

Don't just avoid cooling--ADD HEAT!

Yes! Like socks under the covers at night, lol!

colleen2 girl I've been taking very hot baths right before bed!

Good job, girl! XO

colleen2 I wore tennis shoes all day!!! All day!!!! I went by to quantum neurology today and counselor yesterday and my anxiety is so much better!!!

Hallelujah!

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Bob, happy for you. Tell me did you ever loose the ability to sweat? Yes or no, if you stopped sweating before the desentization, are you now able to sweat. Thanks for pioneering. let me know please

I have always been able to sweat.

I do not sweat at all!

bob548 I lost ability to sweat 9 years ago with EM started. Not been able to sweat. So that is a factor, just Sunday, planted our vegetable garden temps low, but sun over heated me, no sweat, vessels bulged and had to do fans and elevation. Heat stroke, dehydration territory. But I just stay out of sun and summer heat. Thinking for healthy people young and that can still sweat, with otherwise healthy body could try carefully

christy797 you don't sweat anywhere? Or is it only your feet that don't sweat?

christy797 I do not sweat anywhere either, mine stopped when this became a full blown thing.

bob548 I can not sweat anywhere, started to notice no body sweat with in the year I took up EM symptoms. So I can not loose trapped heat.

Just had more blood work, normal except ESR elevated, and my RBC platelet count is high normal, just under 400. Been elevated for few years, but higher this year. The aspirin helps, ( too me thinking with so many platelets crowding for space, the aspirin; could be helping the aggregation or less sticky to move around in the microvessels) at least it helps.

I don't sweat either. It was a side effect of a medication that never went away when I tapered off. I was just telling my husband tonight "if I could just start sweating again I think I'd be just fine"

I do talk sweat either

I am not sweating.

I don't sweat at all no matter what--EM started about the same time that I stopped being able to sweat. Feel that the two are connected.

christy797 You sound like me. I no longer sweat. I do sweat abnormally. If I get cold i sweat under my armpits. Neuro said those with lack of or abnormal sweat will sweat first where normal people sweat first.

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What did your feet look like when they would flare? Did yours turn purple when you let your feet dangle while not flaring?

Occasionally.

Did you flare anywhere else on your body? Face or hands?

amanda31 hands and ears, but that has gone away too.

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I'm so happy for you Bob!! I want to cry because I'm mid flare right now and even a glimmer of hope for me is something. Thank-you so much for sharing your story ?

TRY IT!

Definitely - I'm on it!!

melissa1 Let us know what happens!?

bob548 for sure - will keep you guys posted ?

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Do you think it matters if you soak your feet and take a hot shower in the morning? Or did you purposely do it at night because that is when you flared the most?

I did it at night because initially it took forever for the flares to subside, so I figured I had the whole night to return to normal if I needed the time.

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Why do you add lotion after shower?

Hot water dries the skin.

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This is amazing! Thanks for sharing it.

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The only thing I do when my feet flare is to elevate them and take shoes off. So, you'd walk in shoes and socks until you recovered? How long did that take? Did you just keep walking or did you sit and raise feet?

I only started keeping shoes on during flares after doing the heat treatment for several weeks. Once you've healed yourself partly, you'll be able to just go about your day without interruption. When I started the walks, I was partially recovered and good enough to recover without mechanical aids.

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This is great. I'm so glad it has worked for you. I'm sure it can work for others too. Last year someone also posted on the group about how they cured their EM through heat by using hot water bottles. Absolutely amazing. Gives hope to so many of us. Thank you so much for sharing your progress and trying to help us all xx

I tried water bottles, but they don't provide the degree of heat I wanted ultimately. But they could work as a starting point.

My daughter is in the middle of her examinations. Once done, we're definitely going to try your method.

Hi siera5405, it was me with my hot water bottle, and it is still working?

We are now 3 people with a good result with heat: Will prowse, me and bob548.

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Hi Bob!!! You are the man!!!/><img height=

I sent you a message...

I think I first heard about it from Carine, but I do water instead of water bottles, and only once per day whereas she did it often throughout the day.

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Bob a question for you since you are the pro at this? I plan to start your way and see what happens. I don't do many cooling measures as it is. My questions for you right now I still walk and go to the gym, but I usually will come home after and take off the shoes and socks to get rid of the pain and redness, sometimes elevate sometimes not....In your opinion along with the hot soaking when I have these natural flares just stay as is and try to power through it?? THANKS IN ADVANCE

Good question!!

liliana669... Thanks. I think I will start this in a day or too... I know it won't be easy

Take shoes and socks off after the gym until the hot water treatment has at least partially healed you; then, live normally even during flares. So once partially cured, keep socks on until workout flares resolve.

tammi9 Do it today!?

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Were you working during this transition? My job can't allow for me to just tough through it and wait out the flares for hours at a time. I am also hopeful with your results but scared to try inducing even more pain, possibly making it to where I can't do my job as a physical therapist

I'm an English professor, so I do have some control over my movements at work. But I do it at night so I have the whole night to recover if I need it.

So I can get my mind around the principle of desensitizing to triggers so your brain doesn't perceive it as the same amount of pain, but wouldn't the vascular response occur regardless? Afterall, it's a neurovascular problem, our brain is the thing that processes these environmental triggers (or what our brain wills perceive as a trigger!) as pain.

Here's one way to frame it: You are basically giving your body a thermoregulatory workout. You are challenging it and thereby prompting it to get better in this area. Kind of like pumping iron at the gym.

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Heck ya, glad someone beat it. A month ago I posted somebody has beat this just need to know who and how. I don't believe I can't win. Crap is going down one way or another!!!

That was my attitude too. Try this today!

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Fantastic! I did the same thing with my shoes and socks on all day and didn't take them off when they felt hot. I plan on wearing these tennis shoes every day all day during the summer to not only desensitize to heat but touch too. I was having pain just putting the shoes on! Your post makes me so hopeful! Thank you bob548 for your report!

Do the hot water, too. Keeping shoes on only worked after first partly curing myself via hot water.

Sounds like you eased into it...it's a process....takes patience and time. Haven't been on FB for a while and I was asking about "Bob's Protocol " a while back..so glad you responded. I have achieved somewhat similar improvement with avoiding extremes...aiming for balance between the vasoconstriction and vasodilation states. I have acrocyanosis during the day and put on the heavy socks to dilate the blood flow and warm my feet. By afternoon I switch to lighter socks etc. I also do a lot of calf pumps...toe flexing and pointing to encourage steady blood flow. The hot water is tough for those of us who don't sweat. I did however regain balance there as well with infrared saunas..slow and steady....increasing the time.What a relief when I started to sweat. Thanks Bob!

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Congratulation Bob!

I have to say you are like the 4th person to use heat and other things with it, to cure your em. With 4 people saying heat is the main ingredient there must be something to it.

I'll be honest and say the thought of putting my feet in hot water makes me want to cry already. I mean, my feet have never been able to cool down from a flare on their own. 10 hours is the longest I made it and gave in and used water in tears. I'm so conflicted about trying this. Every time I have read it my thoughts are conflicted with a gripping fear. Now after 4 people it's even scarier because I really want to try it. I just don't know if I have the strength to do it. But I'm going to pray about it for sure.

I'm very very happy for you. Keep us updated.

I have the exact same thoughts & feelings Stacy! ??

tammi9 I can't tell you how scared I am of trying this. Like fear that immobilizes me. It's crazy I know. In my head. Logically I know it's crazy. But the thought of putting my feet in hot water literally strikes terror in me.

Let me know how it goes for you. I keep thinking with each person who does it maybe I will be able to try it.

I guess just focus on the possibility that this might change your life for the better, despite pain and suffering on the front end? Praying for you...

Or it might make things worse like when I took a vasodilator that sent me on a horrid downward spiral. But thank you!

That's my fear considering my other diseases and how bad my flares get (and I do NOT cool).

  • pretty much my thoughts/feelings exactly.❤️

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This is amazing Bob, good for you! I can imagine that it must have difficult to sleep when the flares were lasting hours. I do all I can to keep my feet cool, including having a fan on all day under my desk at work. Maybe I won't turn it on tmrw and try your method. Thanks for sharing?

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So happy for you! Might try it out. Tell me, is there any theory that you based this experiment off of? My curious mind really wants to know

About 4 people have used heat to desensitize and reset the thermostat so to speak. Two people actually wrote books. The French girls book is on Amazon. The theory for all is the same with a little differences with other aspects to the protocol.

Thanks!

if you can go back far enough there is many posts from the French girls and her theory. I wish we could search topics in this group.

Awesome! Good to know!

Perfectly said. Same theory with slight modifications to the practice. Basically, show your body what real heat looks like so that it reacts less violently to moderate/warm temperatures.

The other book is from Will prowse. He used capsaicin before heat. For me it was awful with capsaicin.

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Good for you. My neuro suggested desensitization before the em was em but just warm. This water bucket thing was similar. I tried it for two weeks and thinkniy got worse. By maybe I didn't do it right.

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dorit0 read how he treated em!

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Tried that years ago before it even got really bad but didn't help me a lick, glad it works for you and hoping it will help someone here too!! as always.....always praying!

Same here before I knew what it was, I feel like I only made matters worse

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Do you also have raynauds? Just curious. Also, I'm finding that exercise (light running in my case) is actually helping me. I can't easily use a stair climber or elliptical. A little biking is ok. But running has been amazing. My totally unfounded hypothesis is that is helps the lymphatic system and nervous system. Glad you are doing so much better! My doc at mayo recommended retraining temperature sensors in feet but never knew how. I'll try this.

No, I don't have Raynaud's. I noticed a similar thing with exercise. I think the exercise helps increase heat and so in some small way helps to get your body used to heat. Try the buckets of hot water and let me know how it goes for you.

Bob do you take any medications for EM? When you started the heat therapy were you wearing regular shoes? I work from home, do not have to wear any shoes. I cannot exercise at the moment, I have injured my knee, in the process of getting in to see an ortho doc.

glenda54577 No medications. Wore regular shoes before starting these heat treatments but it was awful wearing them until over a month into doing the heat treatments.

bob548 I suspect the impact of exercise (running ninny case) is from more than just heat desensitization. Otherwise, the different forms of exercise I tried would have affected me somewhat similarly (relatively same effort). I think lymphatic flow helps both circulation and the nervous system, so it's creating a kind of preventative positive feedback loop. I find myself less susceptible to attacks now but I have to watch my effort levels and not go overboard. Waking actually causes me to flare worse than running. For me, I think running offers an angle at my feet that promotes a very even circulatory flow whereas walking did not. Hmmm. Maybe we using totally different mechanisms here. I do have severe raynauds on top of the em.

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I'm glad this has worked for you Bob. Congrats!! I'm wary of trying it as I have Raynauds and probably SFN (although not tested yet). Really hope others have success with this too. I'm staying tuned for sure!

I think I have exactly what you have but I'm trying this!

I also have Raynauds for the past 20+ years. I have peripheral neuropathy. That area still gets flares, but MUCH milder since I began to keep my foot warm instead of cool. It is not gone, but it is about 15% of what it used to be, which was unbearable.

colleen2 Try the water and see if that finishes curing it.

bob548colleen2 if we can cure em with hot water and vecttor then eventually I could increase intensity in vecttor and cure the raynauds! I know you were successful with vecttor fir raynauds!

colleen2 can I pm you? I have Raynauds and peripheral neuropathy as well

adit99 of course!

colleen2 I sent you pm.

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Bob. Your cery specific about buckets and shower. I alresdynsit on a pain machine twice a day so I hate to take too much more time away from family. I am wondering if I just took a really hot bath 30 min each night if that would work. I did this last night and wore shoes and socks all day!

I think that is good too. You might start with the bath and then find that over time you need to escalate, in which case you can always add in the buckets.

bob548 sounds like a plan!

So happy for you!

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I will definitely try it. I have tried various desensitization methods but not like that one. I had tried alternating cold water and hot water for 2 minutes on and 30 seconds for cold water. You do it 6 times in a row a few times a day. It sent my nervous system in chaos. I had pinching burning sensations all over my body after doing this for a few days. The best way to describe this, it felt like black flies bitting me. I will still try this. I believe desensitization is key against this. Thanks for the info and the hope.

I haven't tried the alternating method, but that seems overly stressful. I really think it's all about adding heat.

Thanks again for the info.

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Congrats.

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Si glad for you!

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Robert so happy for your results! I have autonomic dysnomia. This treatment would kill me. Have had two heat strokes. My body temperature goes up to 101 to 102 in a warm shower. Heat also makes my BP skyrocket, heart rate, bladder problems, numbness etc. Diagnosed 5 to 6 months ago with gastroparesis. Many of my symptoms outside of the EM mimic MS. Again! Happy for you. ❤❤

Thanks for your kind words! Praying for you…

It stinks that you can't try it out. I have similar problems with heat. Just curious, do you have the sodium channel mutation causing EM? My heart rate goes crazy, my body temp rises (fevers), and I get dizzy and light headed. I feel like I have a bad flu for an hour or so after a warm shower. Even so, it's good to hear that other people can try it out and are having success.?

Yes I do Nicole. Mine is a genetic mutation. Mom had EM. It is wonderful some are finding relief with this protocol! ?

nicole43375, I don't know if I have this mutation.

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Has anyone with an SCN9a mutation tried this? What were the results? Bob, do you know whether you have a mutation or if any of the other success stories had it?? Curious...

I haven't had any genetic testing.

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I am very happy for you, having said that I wouldn't even know where to start with this, I have had raynaunds for many years, all year round I would have 2 or 3 pair's of socks on and winter boots. I also have idiopathic neuropathy. My EM started about a year and a half ago. I literally go back and forth between burning cold and burning hot all day long? It changes on dime. I wouldn't even know where to start?

That's complicated, but trying it may be the best bet. I seriously doubt that any long term negative consequences would result.

So, try keeping them warm? I am just not sure, I also have electric shocks from my lower back on down? I don't want or need to be more miserable than I am? I will have to discuss with my rheumatologist?

denise73 It is hard for me to advise as each case is so singular. But you can always discuss with your doctor if you need peace of mind.

Denise i too have both EM and raynauds EM started 3 years ago and Raynauds about a year ago I have both all the time don't know which is worse lately 90 degree weather here in New England dr gave me nifedipine meds but it seemed to fight with EM and didn't help but you might try it.

Thank you, but I am done with medications! Side effects are just more than I can handle.?

bob548 has anyone lost some vision mine much more blurred since EM diagnosis

camilla68094 I have double vision especially when I overhead. My autonomic mimics MS. I can not have a MRI "definitive test for MS" as I have a magnetic drill bit behind my cheekbone. Had LP to check for Oligoclonal bands. The radiologist hit my sciatica nerve due to scar tissue from previous lumbar surgeries. Had a 6 month bout of sciatica. When she hit the nerve my leg involuntarily about kicked her. They found humor in this. ? That was years ago. Right now have stocking and glove numbness. So is my vision from my EM/autonomic problems or in-diagnosed MS. ? Our bodies are so complex.

camilla68094 Not sure, but I seem to remember someone remarking on that a year or so ago. My vision is fine.

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So your feet don't turn red at all?

My feet sweat so much. During a flare and without. It's awful! I will try this but I do still take baths and hot saunas which I can cope with.

No redness. They get pink when I do the treatments, but that's normal. No flares during the day or elsewise.

My feet go freezing cold. Do yours? If so what do you do in this case?

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Following

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Heat doesn't always spark a flare in me it is caused by anything even in the Scottish winter I can flare. There isn't always a reason for it

My main and equal triggers are heat and stress. Friction is often a problem, but not as often as the other two, and on the rare occasion when I have a beer, I might or might not flare. Then again, I can be sitting in a mild room, barefoot, feeling no stress at all and have not a beer in sight, yet still flare. I'm not sure, then, if this treatment would work for people like you and me. On a side note, I've been to Scotland only once, but it was the most beautiful country I've seen in all my travels. I hope to get back again some day.

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I am glad you managed to find a cure for yourself though x

Same with me. I'm in UK too. Heat is factor but then so is friction and who knows what. Just happens. I still might give this a go though.

barbara2 Heat and friction were both triggers for me.

Thanks Bob - and for sharing your experiences.

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Congrats. Been curious about this, but if feels way too unthinkable to me. My dad has wanted to try; his isn't as severe, but we both have Raynaud's too...

Me too! It's secondary Raynaud's from the erthromalgia

It's already so unbearable and "toughing it out" sounds completely impossible. Like i feel like i would literally suffocate and die, painfully. So much damage has already been done from my body constantly being and switching between freezing and burning all the time. I just can't imagine it would work for me. I feel like it actually couuuuld be dangerous for us.

Me too! I switch back and forth between raynauds and EM often. And I go from being cold to a full on EM flare in a a split second...drives me nuts. And as bad as my hands hurt when they flare, I just can't imagine forcing them to get worse. They are already getting worse, almost daily, it seems. I am constantly amazed at the new thing that made my hands flare.

???? indeed! I feel like avoiding temps remotely extreme either way is best. I don't have any faith my body would know to "reset." I'm usually freezing and burning at the same time these days, like almost always both to some degree.

I did used to basically take warm showers with my feet soaking in the warm water before my drain was fixed when i was younger, which was super painful...i realized baths are much easier on me... I do feel like warm showers and baths tend to cause more pain but then generally cold more all over after cooling off from that if i manage to. But i can't see that ever fixing it...fascinating though.

rose8456 I do not think this would be good for you. You have em in so many locations and so severe. You couldn't possible even do it for all your locations. As Bob said he has no other conditions and is healthy.

Yeah what i figure ?

I never had Raynaud's, but often when not flaring my toes were cold.

Yeah and I'm like Petunia! My EM is in my hands and arms, face, neck and chest, feet and legs to my knees, and very rarely my thighs (if I try to cover with a blanket in the couch then my thighs will flare). I think I found my twin! ?

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See with Raynaud's too it's an even bigger battle for neutrality... And both hot and cold temps and switching between the two constantly are dangerous, cause more damage and pain...

Buuut also, i can often take very warm or hot temps of water, if I'm submerged... I'm just a defective mermaid, sigh

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Hi, happy to read that. Same for me: I live very well with my EM since I apply my protocol ( https://www.facebook.com/Erythromelalgia-érythermalgie-201987153535039/)

Just curious, so you still have flares?

is your protocol similar to what Bob has said. And yours is primary or secondary?

This was one of the things that inspired me to do this. Thanks !

liliana669, yes, I still have flare, but no pain. And the flare are much much less frequent.

I flare with much higher temperature than before my protocol.

bob548 Really?? I was so disappointed to see that no one have tried my protocol after reading my book. I am so happy that you have tried it and that it is working:) Great job!!

tammi9, My em is primary. That is probably why it has not completly disappeared, but I am pain free now.

I made some changes to it to fit my needs, but I doubt I would have tried it (or thought of it) without having read your book first.

Thanks a lot bob548. Glad to have helped you?

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Yes

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Hiya big I'm so happy for you.your EM was it primary =genetic mutation.or was your EM secondary=due to another cause Many thanks xXx

I'm not sure the cause--I can only say that I have no other health conditions.

That's what has me so curious. I wonder if it only works or is more effective if your EM is primary. (Mine is believed to be) Where a primary mutation increases your perception of pain or increases pain signals... it just makes me wonder.

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Bob sorry not big predicted text xXx

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THANK YOU BOB

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I will certainly try this bob as meds only bring me a wrath of other problems. Thakyou for this info and well done. I hope others can benefit from this?

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Thank you for this info Bob!

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What about children? Hot showers is a lot for children to take.

Bob's protocol may or may not work for everyone, child or not. It's a decision we will each have to make on our own to see what type of reaction we get. I've been considering desensitization for some time now, just wasn't sure how I was going to go about it.

Not sure about children (I don't think I have any, though).?

Yeah i dunno, but i would only do it if the kid was 100% on board, no coxing...and do it more gradually...another thing that might be a good idea, if they want to do it, is start with only one foot and see how it goes?

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While I think this theory works, as Bob said, he has no other diseases. I would caution that this can be very painful. Another member here, jeanne3 tried the hot water and had disastrous results.

I do believe in this theory of desensitizing but after discussing the bad results with Jeanne, she is still trying to desensitize but in a less severe way than hot water. She is dong gradual upgrades in environment temperatures.

We all know about rebound flares and I think we tend to go over board on cooling to prevent flares and then we get use to always being cold. So desensitization can be done in more gradual ways. I know I use to use ice water. Then water. Then no water. I use to keep my house much colder. So maybe taking more steps to up temps slowly for those who have trouble with jumping in hot water so to speak. I know for me this is my plan. A more gradual route.

But it clearly does work for some people.

Mentally, I think I would have to try this approach first. My brain & feet cringe with thoughts of such heat.

Gradually sounds like a great idea, and doing environmental temp seems much less risky.

I used to not keep it as cold and have gone periods of time with only ac units not central air, and i can sometimes survive that way and is better for the Raynaud's, but it makes it much harder to exist and simply move around at all if the room temps aren't colder... Le sigh

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I'm glad it worked for you. Some people have it more severe and have to be on major pain meds. They don't just flare now and then. They flare 24/7.

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bob548 how bad was your EM? This is my situation today.

Pam is this a normal flare for you? Random or from activity?

Mine was a lot worse with swelling and redness over the whole foot.

bob548 thanks for your reply.

tammi9 normal flare. No activity. Just can't get rid of all these chilblains ?

That was mine before...

So for me it has worked A LOT!!

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Good for you I have pretty bad Reynolds every day and taking a shower for me is so painful with tepid water I simply couldn't imagine it with hot water and the temperatures that you used I think it's a great idea I've never used ice of any kind but do sleep with cold friends on either side of my lower legs and feet and that at least allows me a few hours of sleep my flayers her 24 seven I'm never without burning or freezing and the combination is really excruciating wish there was some help for this combination in the meantime good luck did you have any blistering? Camilla jones

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Did you take time off work to follow this. Current I tuff out the days, not sure how coaxing a flare will work for me, but what the hell at some points I can't walk as it is.

A good day, lol

michael96 OMG how painful. Your prone to ulcers and skin breakdown. Very worried about the pressure redness and pressure areas that could become infected and the swelling makes the skin thin, more breakdown. I hope your doctor can see this.

It's from shoes all day. They swell till they blister, boil, or split. Pretty much daily.

michael96 this is not good, I am so so sorry you have to work. This is very dangerous. They are pressure sores, that can turn into ulcers, and then infection, if you get a MRSA infection its really serious. Oh, I am so sorry for your pain, I am guessing you have to wear shoes at work, and can take weeks to months to heal

christy797 Good point Christy! Bless you Michael! Prayers!

Heck, I've only known what it was for a month now. Been fighting this since last July

I didn't take time off work--I noticed positive benefits the next day, so work became easier.

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I'm so happy for you, Bob! Congratulations!

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Interesting. I can't imagine how you tolerated the pain at first after the hot water soaks. Without a 5-min cool water soak before bed during my flares, I would never get to sleep all night - the pain is just so excruciating. I probably can't tolerate what you described anyway. Anyone with Orthostatic Intolerance (OI) including POTS, as many here have since it is also a condition of autonomic nervous system & vascular dysfunction, will cause their OI to get much worse with heat or hot water soaks (especially on the feet) because the heat causes blood vessels to dilate, thereby making it even harder to circulate blood adequately to heart & brain. My EM is in remission now, as it always is once the outdoor weather gets warm, so I have some time to think about this before next winter. Thanks for sharing your experiences.

I sure wish my EM went into remission as the weather warms. Mine gets even worse, which means intolerable. I'm glad for you, but wish it for myself—and everyone else, too!

Same situation here Sue have autonomic dysnomia. My body overheats in internal and external temperatures. Have had two heat strokes. It has erred on low side at 94 degrees after a surgery. I have the opposite of POTS as my BP and heart rate go extremely high. I do not sweat or abnormal swearing when it's cold then where most people who sweat would sweat first. Underarms, palm of hands. Now have gastroparesis from the autonomic dysnomia.

Marsha Kinzer I know - it seems to be unusual but no unheard of - there are others here whose EM is also seasonal in the same way. It makes no logical sense to me, but I'm not complaining!

prentha8335 HR going high is POTS. BP also going high is less common but is still a type of OI. I have POTS and NMH (where BP goes low), as does my son. Have you tried low-dose beta blockers? They would help to reduce your Bp and HR to more normal levels...and treating OI would likely help your EM, too. I think that is one reason my EM seems less extreme than many others here. Just FYI, here is a blog post I wrote on our experiences with beta blockers. You are an even better candidate for them with your high BP. They were life-changing for us, allowing us to live active lives! https://livewithcfs.blogspot.com/2012/11/switching-to-long-acting-beta-blockers.html

sue514 Lately my when walking around my Diastolic will go real low but the Systolic is real high. Once I sit a bit it recovers.

prentha8335 Well our BP drops when we are upright, but the beta blockers helped to stabilize BP and lowered HR. Sorry you have this, too - OI can really make you feel awful!!

Sorry you do too Sue. My autonomic is progressing. Now have gastroparesis from autonomic. ?

prentha8335 Ugh - so sorry! Definitely try treating OI - it can help with a LOT. See the Files section for Dr. Rowe's OI Summary Brochure 2013 - an excellent article about OI and how to treat it. It's written for ME/CFS patients but applies equally well to anyone with any kind of OI conditions.

Reading this now! Very informative and interesting. My cortisone runs low which is also one of the flight or fight hormones. This article mentions the the norepinephrine and epinephrine. Was at a funeral for a nephew who wa killed in a car accident. I could not go to the casket. He looked like my son from across the room. It upset me. The next day due to the heat I stayed in the car at the funeral. I was sitting in the sun. When Jim got back to the car. I told please take me to a bathroom. Was shaking, stuttering, problems breathing and incontinince. I was wiped out for a few days. Thank you for this article. I get the brain fog after doing any reading, singing, paying bills, talking on phone taking care of finances, healthcare etc. I have to call my husband to help me as my brain shuts down. I have always been a hard headed independent Woman. I worked over 30 years as System Analyst/Hardware Engineer. Quit was never in my vocabulary. Now my body and mind dictate I quit. ? Still reading. Thank you!!!

Same here - my EM is only in my feet and only flares in Ohio winters. Summer is just fine, though sometimes I might have mild discomfort like my toes are a little swollen or itchy. In winter, mine will flare from coming in from the cold, so I wonder how one would modify the "add heat" recommendation for us seasonal sufferers? I don't have a problem with hot showers at all. I have been on beta blocker medication every winter for the past 17 years, so when I get my first flare of the year I simply ride it out, but before I was diagnosed and had medication, I could "flare" once and have it not go away for weeks.

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This such good news, very happy for you Bob I'm trying your protocol right now!! Thanks for sharing!

Let me know how it goes!!

Will do Bob, feet do feel quite good after first one, their warmer, normally freezing cold in between flares! Have been pushing thru walking in my sand-shoes lately and socks to bed! This will be good to add to it!

kerry8 do it every day and see what happens.

Try it before bed so you have the night time to recover.

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Thanks for sharing the info bob548. So happy for you!

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Bob, is there a reason why you took your showers at night? Were you also taking a shower in the mornings?

What supplements are you taking?

I only take ALA. I only shower at night. I've showered at night for decades--it's just what works for me schedule-wise.

Ok I was just curious. I appreciate your response. Love ya, Bob!

I'm a Curley gurl!?

I'm a Bob lover. Haha

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CUTE!!!!

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I'm very happy for you, truly. But please do not dismiss pharmaceuticals when they are, for me and others like me, sometimes the only thing keeping us alive. I'm sure it wasn't your intention to be callous and dismissive, but that's exactly how everyone who thinks they've found The Cure Without Drugs sounds to those of us who rely on them to survive.

I've never seen Bob callous or dismissive. He is sharing a protocol that worked for him. He didn't dismiss drugs. He simply said if this protocol works it would be better than drugs and all their side affects. Which is true.

I agree with Bob, the worst thing we can do is sit around hoping some drug or doctor is going to fix us or ease the pain. I take drugs to ease the pain too, but that won't be the only thing I try. I want off these pills as fast as I can.

As I said, it might not have been his intention, but that's how it sounds. He did most certainly dismiss drugs, saying, "I think we can all agree that it is infinitely safer than the polypharmacy approach of which the medical establishment is so fond." It's not just the medical establishment that is fond of the approach, but also the patients who are well-served by it. ~~~ I have never "[sat] around hoping some drug or doctor is going to fix [me]," but rather have spect the last 20 years pursuing information and advocating for myself, trying myriad possibilities from acupuncture to chiropractic to medications to ease my suffering. I rarely, rarely take pain meds but I certainly don't dismiss them for all, because I'm empathetic enough to know they're what works best for some people. My point is that a holier-than-thou attitude helps no one, and makes some feel worse than they already do when battling a demon like EM and even worse (try living with trigeminal neuralgia, the "suicide headache"). Taking into account others' needs and feelings is paramount here.

marsha3901 maybe you are just sensitive. As we all are when we feel hopeless at times. Nobody can tell you how to feel. How you feel is how you feel. But I can say Bob is someone I respect who has only ever posted with a sincere heart to help and he was simply saying if this protocol works it is safer than drugs. That's not dismissive. It's hopeful. And accurate.

I understand when someone comes along and says they are cured our first instinct is jealousy. I sure am jealous. Every. Single. Time. But we have to take this for what it is. A person who is excited and sharing his protocol because he wants that for all of us. He is the fourth person to use heat with success that I personally have witnessed so at some point you have to say hey maybe this is something that might work.

Taking into account others needs and feelings IS paramount here. As I see your side and understand, I am now asking you to step back take a breath and see his side. Maybe take another look at it after a little bit and see his heart and true intentions.

Honestly, if I can keep my feet cold. I don't need any pain meds at all. I'm on amitriptline, Topiramate, and Mexiletine. They the don't subside the flare at all. They help me sleep. I hope they work for some people, but I suspect that most are like me in the fact that cold treatment works better than any med. If it hurts our feelings to keep fighting and looking for answers, Good!!!

I agree!

I'm as entitled to my feelings and opinions as anyone else here. "See his heart and true intentions"? I did just that, and acknowledged that although being dismissive might not have been his intention, it was the end result. I'm sure I'm not the only one here who feels this way, but I might be the only person brave enough to acknowledge it publically. I am a strong person, not cowed by anyone. "Step back"? Should I also sit in the back of the bus and keep to the kitchen? Wow. No, thank you. I am neither jealous nor sensitive, and calling me that is insensitive in itself. Maybe YOU need to step back and join the Dismissive Club. I've never felt unsupportedd, dismissed, or attacked here before but I'm sure feeling those things now, simply because I expressed my feelings. Over and out; I have no desire to fight any further.

Marsha, ok clearly this escalated too far and I'm sorry you feel attacked by me and dismissed by Bob. I said above that you were entitled to how you feel so I can't change the fact that you somehow feel I implied you were not. I understand perfectly how you feel. I even get it. I asked you to step back away from the moment and try to see Bobs side. Clearly you are very hurt and I'm sorry for that, though I can't take back anything I said, nor would I, I can only hope after you have time to step away you may reconsider that I was not attacking you.

Bob is a big boy and he can speak for himself. My point here was twofold. One, to help you try and see Bobs side and his intentions. Two, to support Bob because this is not the first time a person who has been cured and wanted to share the protocol has been attacked or made to feel like crap for doing it.

When the French lady posted her cure with heat we attacked her for selling her book and she left. I was included in that because I think it's pretty despicable to sell a protocol of basically heat to make a buck off hurting people. Had she not done that she would have been fine for me personally.

The point is, the people who get cured end up leaving and I think that's a shame. People who claim diet alone has been a cure are often slammed because frankly it doesn't work for everyone and people think they come off holier than thou. I get it. I did strict diet for 3 years. It didn't heal me. But it has healed others.

I don't think these people mean to come off holier than thou. I think they are excited beyond belief and want to share. They want everyone to be healed.

It's so hard to see others cured while we suffer. I get it. Been there. Done that. Go there often. But what I would hate even more is for people who find a cure to watch what happened to others and decide NOT TO SHARE. We need these people. And while nothing works for everyone, who knows when your number comes up and it works for you.

If you know in your heart it wasn't Bobs intention to dismiss you or drugs, why make him feel like crap? While it's not my place to speak for him, I would lay money that I KNOW it was not his intent to dismiss drugs or people using drugs. Would lay money down.

I also understand why you felt that way.

Clearly enough has been said but maybe others reading all this will gleam something positive out of our words.

Hugs and apologies to you Marsha.

Well said!

Marsha: I apologize if I came across at all insensitive or dismissive. I merely offer up this protocol so that others can consider adding it to their list of things to try. I figure if it helps only one other person, then at least that gives a little something back to a support group that has offered me much.

Marsha Kinzer, your feelings are valid and agree trying to be considerate and sensitive with stuff like this is very important.

The rest kinda made up for it, but saying "maybe you're just sensitive" is vety unhelpful thing to say...people can't help being sensitive, especially people like us, and she wasn't being unreasonable stating her feelings. There's literally no way she'd know his "true intentions" from text on the internet so i think it's totally warranted to mention what she did, in hopes of making him more aware of how such a thing could come off, to be more sensitive in the future...not to make him feel bad, just to think more about things he's saying.

This seems pretty settled now, just wanted to lend some empathetic words. ?

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michael96 I do take drugs as well and I also eant of them as soon as possible!

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Thanks for sharing! So I guessing you still eat very healthy? Besides heat.. many things I consume make my EM worse... not sure if I should try this if other things flare it too... thoughts?

I eat healthy, but that's always been my nature. I've always been kind of a health nut.

Eating healthy is pretty relative, especially when food effects pain flares. Like fruit is thought to be healthy, but certain fruits and literally any food can hurt an individual.

It is best to try to only try one thing at a time, for the most conclusive results...so I'd suggest trying food elimination thing first or vice versa so the reults are perhaps at least slightly more clear.

Thanks I agree.. one at a time. I've already done the food. Just not sure if I will try the best or not

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Bob, for the past two nights we've put my daughter in the shower. Since she's in bed full time and sitting up makes her much worse, we didn't soak her feet before but we used the basin I wash her feet in while she was in the shower for her feet. She went to the shower both times with hot feet and legs and didn't cool down so we will keep trying. She has noticed that if a knee is hot when she showers that it cools. She takes zero medication and is on a whole food plant based diet with no sugar or processed foods. Her em started with crps and goes from her thighs to the bottom of her feet and her arms, hands, and face, but mostly legs and feet. She also shakes very badly when she tries to walk on her crutches. I'm told it is a pain response. Thank you for letting us know what works for you.

Her heat can be all over or it moves to a foot, knee, leg, face, arms, or hands. It's never in the same spot for more than a couple of days but it's constant, 24/7. Sometimes she has 30 minutes in a day when she's cool. That's a good day but then she turns blue from crps.

I'm so sorry to hear about her case. Her situation sounds more complicated than mine, so proceed with caution.

Does it seem to be working at all? You did mention something about her knee cooling?

Thank you. It's complicated but I have no doubt we can heal her naturally. She's currently enrolled in the Institute of integrative nutrition to be a health coach so that she can help others become healthy once she heals. We bought vecttor and frequency specific microcurrent for her, but she's usually too hot to use them. She uses oils, hydrosol sprays, and cool cloths for pain.

Her knees seem to cool after a shower but her feet often stay or get hot.

How long until the feet subside after showering?

She sits in a shower chair and her feet aren't used to hanging down.

They haven't. She hasn't cooled down in several days.

jody1 Wow. I don't know what to say other than to proceed with caution.

Thank you. Yeah, we haven't found a case similar to Chelsi's yet.

She hasn't had a day without crps or erythromelalgia symptoms since April 2016. She fell in March.

Jody my heart breaks for her. And for you. My heartfelt prayers for you both.

Thank you!!

?????

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I don't want to add to any disagreements here on this post. I do, however want to add my two cents about my take on Bobs post. I have been following Bob ( I'm not a stalker) and have been friends with him on Facebook for a while. I have reached out to him several times on his protocol to see how he was doing with it. I truly believe that his post was just a way to reach out and share what has worked for him. I have NEVER seen him try to make light of anyones situation or belittle their treatment. He has a pure and kind heart.

I see many people listing all the medications they take that has helped them and because I can't tolerate meds I have never turned on them. I do agree with Bob - all natural treatments are probably SAFER than putting drugs into our bodies. But I know that some people need the meds. I think that as a member of a support group we are happy to share what works for us with the hope that it will help someone else. I hope this post doesn't discourage others from sharing what works for them. I am envious that others can take meds to help - I can't. It seems people now want to "dismiss" what is working for him.

bob548, thank you for taking the time to share with us. I hope your protocol continues to keep you symptom free. Please keep in touch and let us know how you're doing. Love and hugs to you.

I am with you 100% can't tolerate meds either and anything that is easy and natural to try- I'm willing. I have a few other things going on such as face burning with no redness, cold burning feet and a vibration in my body. So here is what I'm doing naturally to try and help. Vecttor therapy, to help heal nerves and nervous system. Meditation, Motivation youtube videos, counseling and these are just self help for anxiety etc. I am trying bob's hot water protocol and not cooling feet when they are in a flair. I am wearing tennis shoes no matter how painful to try and desensitze them from the feeling of shoes. If I wear flip flops or just socks around the house that comes with other painful feelings so will try the tennis shoes in the house. I am trying capsazin cream on my face where it burns. I read article where it may create something called substance p and make the burning stop. I don't know if it will work and it actually burns when i put it on but it subsides. I will do this for a few weeks and see how it goes. good luck to all and for those of us who can't take meds please post things that help bc these natural things aren't given by doctors!!!

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I agree with you jeanne3!

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That's incredible News!!! I'm so happy and excited for you!

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You know what I would like to know is how to desentitize my feet from cold and hot- I know how to try the heat but how would one go about for the cold? I guess for now I will work on one issue at a time- so em it is!

Yeah, the cold would be more dangerous to try to desensitize...

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How would I go about doing this for my face

I would stand under hot water in the shower. That's all I can think of. There's the whole breathing thing...

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If we could all find what helps us wouldn't we want to share? I know I would.... People are entirely to sensitive these days and jump to their own conclusion because it fits their agenda.... Relax and find joy that one of us found their cure or help.....

Amen sista ?

Word.

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I'm so afraid to try this.. sometimes after a shower or a long walk in closed shoes, the heat in my feet is so bad I feel like there is a huge weight on my chest and I can't breathe right, like I'm going crazy. I immediately rush to the bathroom to rinse my feet in cool water. I'm not quite brave enough yet to purposely put my feet in a bucket of warm water before a hot shower, or to keep my shoes on after getting home.. but this week I've started not rinsing in cool water and just waiting it out. When I at least get myself used to that I'll take it up a notch. Thanks Bob for inspiring and encouraging us all to give this a try!

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Interesting. Thank you for sharing a positive and hope filled post! bob548, Do you know the cause of your EM? When/how did it start?

I was "fine" 3.5 years ago. Then I got hit with sfpn and EM. I have Ehlers Danlos syndrome and POTS that became very symptomatic after the onset of sfn and then EM. I now have dozens of dislocations daily and multiple daily EM flares. I never knew I had anything until a few years ago.

Stared 18 months ago but no discernible cause.

Same for me, no cause found. Primary very severe EM started at 39 years old, and desensitization hav worked very well. I have auto immune disease but not related with EM apparently.

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Bob Thanks for sharing ??? I will also try this. I have reacted with allergy to the med I tried so far ?

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I'm so pleased you've found some relief. Well done this can't have been easy.

I don't shy away from heat and that may be why my flares are a little more controlled or predictable. I take hot showers, go for long walks or runs with trainers and socks and I never use cooling methods. But I still flare, my showers go up to 42 degrees (Celsius) and I will flare afterwards. I guess I just don't understand how this method works?

I also have Hashimoto's, supra-ventricular tachycardia and peripheral nerve hyper-excitability. I currently take thyroxine and labetalol. But in the grand scheme of things I'm pretty fit and healthy.

This may not work in your case, at least not fully. It's all so individual. Sounds like there are a few things at play. But I'm glad you have it somewhat under control.

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I'm wondering if anyone else is like me when it comes to water... I adapt SO much better to water than to air.

Touching water (like washing hands) with purely cold or too hot of water are both very painful to me.

But if I am submerged in water, like a bath or pool, I can take and like and need warm water...and i can go in a hot tub if the air around it is cold...it takes longer to adjust to that, but i do.

I just need gill to fulfill my mermaid life.

But really...anyone else similar when it comes to water?

I recently read an article (jody1) do you have that one saved? in which a lady discussed the water therapy pool helping because of the pressure on our veins? I will try to find it. I think I saved it somewhere!

No but that makes sense!

Ye. Oh wish how i had the access and ability to swim here. It is the best. I got to go night swimming every night for a couple months couple years ago in California...didn't see improvement with pain but made me feel better mentally and best, least painful exercise i can do... Unfortunately a pharmaceutical drug ruined everything, too much pain to even do that...and I'm back stuck in Michigan.

You sure are a Trooper, rose8456!! Big Pharma is ruining our lives in this country.

I was pretty lucky when it came to side effects up till then, but now I'm scared. They can cause major and permanent damage. You literally never know...nothing is harmless...

Big pharma and medical industry as a whole is full of money grubbing bs... It's disgusting

Girl, don't get me started! Aside from animal abuse and irresponsible breeding, THAT is my biggest "soapbox"!

And my experiences with "holistic" medicine is the same pretty much...but almost worse, but it's hard to say...whether they really believe the bs they try to sell to desperate people or not..... Sigh

Good help is hard to find. That is for sure!

colleen2, when I was taking her to the pool it made her worse each time, but she hasn't been in months.

colleen2 thank you for the neutral therapy pool. At my indoor gym the water is 5 feet deep and I get in to submerge. The water temp is 88 and not to cold. It did reset my adohynia and I am 364 days x 8 y ears without it I am a mess. It is the most therapeutic physically and i move with a noodle bilateral and do not touch the bottom. I am in the pool daily at 4-5pm and then home to couch for evening. Thanks for the article, i have printed it to read. I had this idea from why the slight compression garment also calms my skin. (PT from Burn unit says it helps the burn patients to have slight compression) plus I pool fluids in lower leg and feet in summer. So this is my other stand by oversized capri length Spanx

Pools make me worse!! I think it's the pressure or chlorine. I'm ok in my bath.0

colleen2 You had me at "Girl."

All great comments? I spent 2 years going to an indoor pool at a local hotel, this was before the Em, diagnosis? I didn't understand at the time, by the way the pool was at a constant 76 degrees, when I would get out within minutes my feet would swell up? Some people here know what is primary, secondary? How do I know? I was diagnosed with raynaunds then neuropathy and now Em much later? How do I go about treatment that will benefit all my symptoms? Is it even possible? I have become accustomed to treating the symptoms at hand? When I say my feet are burning cold, the cold and pain are unbelievable!!! The last ten years I worked I look back and wonder what if I hadn't ignored my symptoms, what if anything could I have done different or maybe not? Again how does a person know what is primary, secondary?

denise73 The only way to know for sure that it is secondary is to have a diagnosed condition that precedes and is causing the EM.

I have been to so many doctors? Where would I even start?

If you live near a teaching hospital, I'd look for an academic doctor.

I know I have peripheral neuropathy. EM developed when that occurred with a disc herniation.. However, I have had Raynauds for 20+ years, which is auto-immune. Therefore, I think, as does my GP and my Integrative MD that my EM is auto-immune.

I live in the boonies Bob, most of doctors I have seen are clueless?

Unfortunately doctors everywhere are mostly or entirely clueless about EM but having even less options is even worse?

There's a patient pamphlet you can download/print from the TEA website to help you and doctors find your way, eliminating things and hopefully diagnosis

amy28, that sucks. What pressure? What about just floating? Or the temp makes you swell? I was getting to swim in a salt water pool when i was in California...

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Bob's treatment protocol is intriguing. NASA after being in space for a prolonge period do breathing and other things "wish I had the article" to reset their autonomic nervous system. Makes me wonder in secondary EM if Bob's treatment is doing some kind of reset or reboot. Not all medical terminology here. Sorry.

My Em is primary, I have the mutated Gene but, I am trying this to see if it will work.

I dont think bob has secondary em to any other disease. He said em is all he has. But that does not mean he has the genetic gene for em either.

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Ok Bob Bartholomew, given it a shot tonight. Initial thoughts is WTF was going through your mind to try to antagonize a flare. Cause instant pain and swelling with my foot hitting the hot water, but going to give it a shot nothing to loose. Lol

Let me know what happens. Is EM all you have?

Keep us updated. How long did it take for the flare to end? I could never do it without a fan.

No, I have type 2 Diabetes, but this didn't show up until after I corrected my A1C from 12.9 to 6.5 in 1.5 months just by eating healthy. Now I can't walk, go figure.

Been a hour, flare still ragging in my feet

michael96 Took me hours to recover the first few times I did it.

Yeah, thinking Sunday was a bad day to start since I have to work tomorrow at 6AM.

michael96 Full speed ahead!

It would never go away for me. A flare that bad has never gone away on its own for me. Even have to use water sometimes. This is why I'm so scared to do it. Sitting in pain for days... I would never do it. I would break down and use cool water.

Are you sure the flares are gone or you have an adjusted pain tolerance, LMAO!!!

I Have been following this post from the beginning? While I am intrigued by it, most of us have other issues? Plea care of yourselves.se everyone ta

Please take care of yourself? Stupid autocorrect!

michael96 Totally gone. But I have no other issues, so proceed with caution.

Well Bob, honestly if this don't work I'm going back to Mt. Dew. Never had this problem with my sugar at 490 and A1C at 12.9.

Michael Givan I seriously doubt becoming a diabetic will help your em. Just because the em appeared after your A1C changed doesn't mean it caused it.

On ?, lol. Actually the left foot is calming down.

michael96 Brutal!!!!

michael96 keep me posted. I want the blow by blow.

Flare ended at 2:30 ish. Fell asleep.

michael96 Let me know if the day at work is easier, if you're noticing a difference.

Kinda normal EM day for me. Starting to rear it's ugly head about 2:00 as usual. Hopefully this will pay off in a few weeks.

I'm praying for you Michael! That looks painful

Tonight after hot water treatment and shower. Not as red today.

Wow, I can see the difference!

michael96 EXCELLENT! Take the long view and monitor it day by day. At some point, your days should be better. Your nights should be better, too, said Air Supply.

Bout the same today - Day 3

michael96 I'm more interested in how your day was--it'll be awhile before the hot water stops giving you trouble. Did you have the same intensity of flare today at 2pm? Eventually, the days should get better.

I really didn't have a flare until about 4 today which was interesting.

michael96 Sounds like a move in the right direction. Stick with this and hopefully the trend will continue!

Day 5: No pain in the left foot at all. Really weird. Right foot was as bad as normal, but I can at least hop around on one foot no problem. I will have to say as a diabetic I committed a cardinal sin and drank an entire bottle of Mt. Dew because May 24th, 2016 was the last time I had one (Used to drink two 2L a day). Made it a year and a day. Boy was it good, so with that being said. Either the medicine, Bob's heat treatment, or the Mt Dew helped today, lol. I'll take it. Oh, had a EMG yesterday, holy crap that is painfull!!!!!

michael96 I live for these updates!!

Well had to stop for past couple days. Was in the ER, thought I was having a heart attack. Released now, but have some follow up testing to do. Good news was the left foot has not flared with pain in several days and Seems to be healing up. Right foot still lagging behind, but has not been as bad.

Michael Givan are you sure this hot water is helping? I mean, we tend to think something helped us or hurt us based on timing but coincidence is involved in a lot of this stuff. They look so very painful. Hope your feet and other conditions heal for you.

The left foot has not really had any pain since day 2. Right foot really is about the same. The bottom of the left foot which you cant see is completely healed up. The heat rash is still on top, but it's clearing up. I am using bags now, not just putting my bare feet in water.

I'm sorry to hear about your trip to the ER but I'm glad to hear that your feet are getting better!

Thanks, nitrogycerine cleared up the chest pain, which could mean I have a blockage or even gall bladder issue. Holliday weekend so the hospital is short on staff. Have a stress test tomorrow and maybe a angiogram depending upon those results. It's funny chest hurting like heck, the ER doctor says what's going on with your feet. The right one was flaring at that time, lol

Will you be able to continue the hot water treatments?

Going to hold off till the testing is done. Causes pain and stress, lol. Don't want to take a chance, yet. They ruled out a heart attack, so that's good.

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My EM is resolved. My feet were the problem. Essentially. However you do it. The KEY is the more normal you treat your body the more normal it will begin to behave. It is a slow process but it is the answer

can you share how your EM is resolved please?

Erin Sanford Fitzgerald, I agree totally. It gets easier as you begin to get better. Then you can do normal things again with less discomfort! So glad you have found comfort, as well❤️

No redness. No pain. Able to wear shoes and walk up to 5 miles

How did you resolve yours?

Did you use similar method as Bob?

We all want to hear this

No. Just slowly started treating my feet normal. And key is thinking about them as normal. Using cold treatment of any kind is detrimental. It feels good but it encourages the rebound red hot reaction

Anxiety plays a huge role in this problem

If you have hot feet. Face. Ears. Start with tapes of progressive muscle relaxation and do it 10 times a day if you can

Then begin focusing on warming your hands

This is treatment for migraines. Think about it. This is like a migraine in your feet or whever your symptoms are

In Fitzgerald I trust!

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erin3898- did you do something similar to what Bob did. Was your EM also primary?

Would also like to know what you did how long you had EM primary secondary etc thanks

Primary. Since very young but worst age 16 to 24

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You can't beat a genetic mutation in my eyes x

He isn't curing em he is resetting the environment to it it by heat tolerance.

that's an interesting description. I'm not sure what I'm doing, but it's working. That's all I care about. That's a very interesting description.

I doubt that I have the genetic mutation.

bob548 I don't consider it a cure personally though I see why you may. A cure would be fixing the autonomic nervous system that is dysfunctional which I don't believe you have done. But you have changed the environment. Something like a reset button, in my opinion.

But as you say, whatever you call it, you have no pain, and that is what matters.

It's a lot of semantics, but I appreciate the argument you are making. Many theories that sound right turn out to be wrong, including my own. So we do what works and tune out the rest. I actually do think for me this is a cure because before EM I spent a lot of time in way too cool environments running from the heat. I think I may have triggered the EM in the first place. In fact, I used to run cold water on myself after a hot shower to cool myself down (before EM), which was a mistake. All that said, my case was milder than many on here.

Mine was very severe, and it has worked also with my protocol, I still have little flares sometimes, but no pain.

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I think the nervous system can be re trained

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Biofeedback totally helped me reset my nervous system

I was told nerve pain can take 6 mo to reset with pos thoughts, deep breathing, amongst other natural methods. Didn't help my burning but helped with sharp nerve pain.

How did you do biofeedback? Did you go to some kind of specialist for it? Can you do it on your own at home?

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So glad to hear this for you, bob548. Are you still using any EM products/meds? I wish this was my case. Going to PM you.?

I take ALA, but that's it.

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I am so happy for you Bob.

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bob548, I think you win the award for the most comments to a post ?? Thanks for your encouragement to everyone - you're the man!

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colleen2, isn't this the same concept as Vecttor? Chelsi hasn't used her Vecttor since May 9th because she hasn't had a cool moment, but she used it last night, though warm, with this in mind, adding heat. She's blazing again today but we're going to try upper body anyway.

Vecttor creates warmth, but that is not the point of Vecttor. The point of vecttor is production of neurotransmitters

Gotcha!! I haven't had the chance to explore the why or how of Chelsi's machines.

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Bob I'm happy for you, I hope it last for ever, As you know EM can go in remission and return unexpectedly. ?.

It won't be back. I may have to continue the heat treatments (or not), but it won't be back.

Wow you are very sure of yourself. Good for you ?

mia56 I think I triggered the problem a few years ago by running from heat and taking cool showers after warm ones. Now I'm resetting things. For me (and I can only speak for myself), the key is retraining my thermoregulatory infrastructure to cool itself like a normal person's would without rushing to aid it with mechanical cooling means.

Happy for you. ? My thermometer is broke. ☹

it won't be back...this is all about classical conditioning

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Thank you Bob for taking the Time to explain how you did it, a step by step breakdown. hopefully MANY will be able to experience the same results!!!? I hope you are enjoying​ your new found FREEDOM

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Should this work for patients with genetic erythromelalgia?

This is all trial and error. Who knows who it will help or what kind of em.

Try it and see!

bob548 I will!

bavo0 Let us know how it goes.

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Everyone should try it,,what do you have to Loose??

It might not be in the best interest of those of us that have it wide spread across our bodies, and other autoimmune conditions. Not to mention heat is also bad for my myasthenia gravis, a neuromuscular disease that causes grave muscle weakness.

For those who do not have additional issue's,, this just addresses​ those with EM,,:) hope you find something that will help you in your situation.keep on fighting

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I am wondering if this method would work for those who are vasodilators. Hot water would cause the blood vessels to expand even further wouldn't it? I have had some eye surgery so if someone has already asked this please forgive me.

Yes hot water is a huge vasodilator. The hypothesis of this theory is that you are desensitizing and resetting the temperature control so to speak.

This is a painful trial for sure. I mean putting your feet in hot water is going to cause pain and vasodilation as Bob and those who are trying it have stated. It brings on a flare. It's about resetting pain and temp tolerance. Not curing.

It's only officially a "cure" if the faulty temp and pain tolerance was the only issue attending the EM.

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becky8 I'd clear it with your doctor First unfortunately no one here is a doctor ir eye specialist who can tell you..I wouldn't​ risk it if you have any doubt,, better safe than sorry?

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Congrats bob548, I am so happy for you that you are pain free and I pray and hope this helps others as well. I have made several changes in my life (location, diet, exercise etc.) in the last one and a half years and I have seen significant improvement in my condition. One of changes has been living without air conditioning (not by choice) or any artificial cooling and taking a hot shower everyday so I can relate to your protocol. I still have to wear open shoes when the temperature is above 28 degrees Celsius but my heat tolerance has increased and I sleep better. Besides this, I have also been eating a 100% gluten free, organic and whole food diet for the last two years which has helped me a lot especially with the achy muscle/joint pain feeling that I used to experience earlier whenever I flared. I don’t consume or use any chemicals, food additives, make up etc. anymore and I am not on any medicines.

Sounds like you are doing all the right stuff.

Bob did your feet flare in direct sun? If so has this also stopped. My feet sweat like mad during a flare many times. It's disgusting. How long have you had EM for and how many treatments did you say it took before you noticed no more flaring?

claudine24113 It was a couple months before being cured, but to answer your questions, yes, they used to flare in the sun. I had EM for over a year, with the earliest pre-signs a couple years before that.

That's funny, my feet did not sweat at all during a flare but just swell until they crack and bleed unless I cooled, but now the swelling has limited using the hot water. Once I get my health back on track I will start again.

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I'm so happy for you, bob548!? The idea of this is equally tempting and terrifying! Just the thought of hot water makes me shudder. We're gearing up for a cross-country move to TN, but once we get settled there I might have to brave this. I do have a couple of questions, though, for both you and . Did you use cooling methods before? What was a typical EM day like for you as far as flares and how you treated them? For example, I wake up in the morning and my feet are tingly, but usually not too painful right away. I can't tolerate socks or shoes, so I only wear flip flops. I try to get most of my errands/house work done in the morning because my pain ramps up in the afternoons/evenings. Being on my feet for any length of time or being in a warm environment cause them to get red, hot, painful, and they will sometimes swell. Right now I usually treat the flares by elevating them in my recliner with my feet above hip level, and turning a fan on them on high. If the flare is really bad, I'll spray them with cold water in the shower and then put them in front of the fan. After a while of this, the flare subsides and I'm in little to no pain if I stay in my chair with my fan. But if I get up and start moving around, exercising, turn off the fan, etc, I flare again. I also sleep with my feet uncovered and a fan blowing on them all night. In the car, I blast them with AC, but then they'll start to flare if they get too cold, so then I turn the AC off and they calm down again, then get too warm and flare, so the AC goes back on, and the cycle repeats.

So I guess I'm just wondering what a normal day looked like for you guys before the heat therapy helped. How often did you flare? How bad were the flares? At my worst, I was hospitalized for 8 days and the pain was unbearable even with a full epidural, and IV lidocaine and hydromorphone. I couldn't even tolerate air blowing across my feet without screaming, was in a wheel chair, and pretty much wanted to die. So I'm a far way from that (thankfully!), but my current level of pain hasn't improved or worsened for the last few years.

Do your feet still get red? I'm curious if the redness has also gone away or if they still get red but the pain is not there? What about heat and/or swelling? Again, thank you for sharing your experience! I truly believe that ultimately there's more knowledge to be gained from each other than from the average doctor's office.❤️

Be careful, I saw a lady post somewhere that she tried this a couple years ago and it made her worst.

And that's exactly why it terrifies me.

I'm to the point now where it rarely gets unbearable. It's painful, frustrating, depressing, and limiting, but it's livable. But the possibility of trying to make it better, especially without more drugs, is tempting!

My days were a lot like yours, but it never got so bad that I ended up in the hospital. But I went through the cycle of cooling just like you did. Proceed with caution. Do you have any other conditions?

Before 2012, I was completely healthy. Thyroid cancer in 2012. Then I took Cipro (Ciprofloxacin - antibiotic) for a bladder infection and my EM symptoms started about a week later. Nobody knew what it was, and after all the tests known to man came back normal, my doctors figured it was just a strange autoimmune reaction to the cancer or stress of diagnosis. Nobody (including myself) thought twice about the Cipro. My symptoms gradually got better and by the end of 2013 they were gone and I was back to normal/healthy. Then I took Cipro again in late January 2014 and the EM symptoms came back worse than ever the beginning of February. I was hospitalized in April of 2014 because the pain had gotten so bad that I was soaking my feet in ice water because it was the only thing that provided any relief and by that point I was borderline suicidal. I hadn't been able to sleep for more than 20 minutes at a time in months, and I seriously think I was on the brink of a complete mental breakdown. Anyway, once I was in the hospital, they were able to get my feet out of the ice water, but only with the epidural and IV meds, and even then it was EXCRUCIATING. But before then, if I even took my feet out of the ice water for a minute, the pain was unbearable. So I think I definitely made my symptoms worse with the extreme cooling I was doing. Now I use cooling to stay comfortable, but your experience makes me wonder if I'm hindering my ability to heal by doing so. Since then, I've been diagnosed with type 2 diabetes (I had gestational diabetes with my last two pregnancies, and when my last daughter was born in 2015, it didn't go away), but it's controlled with diet (ketogenic), and my blood sugars are now in the normal range without meds. So I take thyroid supplementation and am still on a low dose of Cymbalta for EM, but that's it.

heather53 your case and history is certainly a lot more complicated than mine. It's hard for me to advise. Run it by your doctor and if he thinks it won't do any harm then try it. In the meantime, I'll be praying for you.

Thanks, Bob. I realize you're not a doctor, and we all react so differently to drugs/therapies. I definitely don't expect you to know how the hot water would affect me, and my doctor would be just as lost. That's the scary part about trying ANYTHING new when you've gone through EM, especially a severe case. I'll still probably try it at some point, though, and I appreciate your willingness to share. And I'll take the prayers! I'm praying for all of us!?

Heather Briggs Demars, I was hospitalized 6 days for my flares before my protocol, with tramadol, amytriptiline, ketamine infusions. Without great success... I have taken neurontin, lyrica, no effect on may pain. I had pain when I waked on in the morning, in the night, when I walked 5 minutes, When I took a shower, when I was eating, when I was standing more than 10 minutes on my feet. And it was a awful pain. I was thinking of suicide because of the pain and disability. My protocol was hard at the beginning, because put hot on my feet was very painful of course, but the pain was so awful and my em quicky progressive that it was for me my last chance to try something...And it has worked. My feet are still red and hot, but less, and not painful (just a little sometimes if I have not put them on my hot bottle.) If I stop my protocol, em and pain quickly goes up. So for me I can say that I am not cured but with my protocol it is controlled with really great success (95% painfree ).

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I tried this a few years ago and and had no success with it. ? I'm glad it worked for you though. ?

There are many reasons why Ppl experience EM,if you don't fix or remove the cause this won't work for you.. Identifying the cause is 1/2 the problem

natascha672 I totally agree. I can't avoid all of the triggers that I know of like heat for example (I live in the Central Valley of California). I avoid alcohol though.

I can't imagine living a very hot climate ugh,,I also avoid Suger​

natascha672 it's awful from mid April through November. I can't wait to retire and live by the coast. (Many years away right now.?

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julie135 read the post by bob548

Thank you

Dated 5/18.

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Here it is maria

GRAZIEEE thank you

may be it will not work but make sense if in my case is an injury to spinal cord I may... english... to difficult for me....desensibilize my nerves

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Wondering if anyone with small fiber neuropathy and EM have tried this or are in the process of trying this?

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I have EM & feel SFN too but still waiting skin punch results I am still doing this protocol Seeing improvement in constant temperature of my feet, not so freezing by day & it's winter here

Thanks Kerry! That's encouraging news!

I have been putting my feet into very warm water but nothing hot (yet)

Hope you find some relief too!

kerry8 you too Kerry

Kerry Sheffield I see you are in Adelaide Australia? I am in Canberra. I have SFN and maybe ethythromelagia developing. May I ask where you got the skin biopsy done? It is not avail here or in Sydney.

Sorry to hear you may have this too, skin biopsy done at clinpath but only few branches did it.

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Has anyone with EM as a result of Lyme disease tried this healing protocol?

My EM is a result to Lyme disease

adit99 My son's, too. How are you treating it?

lois5700 I am taking 3 types of antibiotics right now.. Hope to feel better.. What about your son..?

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It may have been asked if you just flush on the face & ear, I have SFN also wondering if this will do anything body wise or just help the feet? Haven't been confirmed for EM just my internist saying I have symptoms but neurologist says it's SFN.

I'm like you Judy...my dx is SFN however I have clear signs of EM..are you on meds? (Sorry if this is intrusive on my part)..trying to see what others do who have SFn?

cathy11397 not intrusive at all, given everything a try, no answers unfortunately. I've quit most supplements use topical & mostly just deal with it. Wish I had better info for you been dealing with this for 29 years. Thinking I've had EM most of this time thinking back to as red as I used to get exercising & just life. Nobody knew what SFN was until 21 years later been a vicious cycle. I do believe I went into remission had many good years so hoping that happens again. How long have you had it? What do you do?

SFN can cause EM?

Just like there are MANY causes for cancer!

judy51456 wow I hope you go into remission also..I think I have had it since my SFN started last October... I take low dose naltrexone 4.5 mg..plus a ton of supplements... I had the burning and pain throughout my body and that has cleared up...however my feet are still not improved as much as I would like them to be..so now I am looking for further solutions...

cathy11397 can you share what supplements you take that helped you with the burning & before the low dose naltrexone did you take anything else. You can PM me if you would rather. My internist wants me to try Nicotinamide Riboside I'm at that point of questioning everything since it's all trial & error. Thanks.

Judy Schnair Watt Shapiro I have been taking the following supplements/vitamins since January 2, 2017 ( I learned about these supplements from another group called Solutions to PN): am: 2/300 mg RALA 1 500 mg acetyl carnitine; 1 5000 Vit d3; 2 magnesium; 2 brewers yeast tablets; liquid b12 afternoon. Biotin and K2 pm: 2 more R alpha lipoid acid 1 acetyl carnitine; d3; 2 magnesium tablets and hemp oil, fish oil as well...the group called Solutions to PN is a closed group and I have learned some useful information about SFN. You should join the group!...I also take Berberine, ubiquinol and a prescription Methyl folate called Deplin. SOme of these supplements are vasodilators which could aggravate EM...Dr Cohen lists the supplements that could do this,,anyway I hope this helps...pm me any time

You may have both. And if the biopsy is negative, that doesn't mean you don't have it my neurolovist told me. SFN is constant pain.

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cathy11397 I know of the protocol was on the group but only tried a few things & didn't work for me. Glad your getting some relief. I read threw Dr Cohens lists learned a lot. I was taking prescription L-Methyl Folate made me burn more I'll check out the others you mentioned. Thanks

Ok Judy. I know the berberine was doctor recommended and it is supposed to help with inflammation. If my doctor suggests anything else I will gladly share it with you and others

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