A query re Bob's bucket protocol. As I understand it, Bob's heat densenitisation strategy involves systematic heat exposure and then forcing the body to cool down on it's own without help. Thanks to all of you for sharing your experiences with it. We have just finished summer here, and my feet are getting hot a lot, so in the spirit of the protocol I am trying not to use cold water or direct air con blowing on them to cool them down - to be consistent with the idea behind Bob's protocol. But I still do things like elevate my feet when needed, and seek out cool rooms and have invested in air conditioning at home, and enjoy swimming. Maybe I shouldn't do all of these things either though to be consistent with making the body cool itself down? What did/do you all do? (I haven't yet started formally doing the protocol with hot buckets of water.) Thanks for any thoughts.
A query re Bob's bucket protocol...
I don’t think I’ll ever do bobs protocol, as you can be doing more damage then good. It’s great that it worked for some, but for me
So we have EM, our bodies burn due to heat, stress, and so much more, not to mention getting into a shower with warm water and my whole body flares up.
I already hate having a shower due to the pain, so why would I ever purposely dunk my feet in warm to hot water for however long, and not know the risks I’m doing to my body in the process. To me it’s nonsensical, but like I said, I’m glad it’s worked for others. To be fair though, I have Raynauds aswell, and so if I did this, I could result in more chilblains.
I felt exactly the same way you do now. I know it seems insane to do the warm water thing, and I couldn't imagine doing something like that until I started hearing of the improvements others were having. I also have Raynaud's as well. For a good number of us, we have had varying measures of success, much better than before we started, for sure. And our chillblains are a thing of the past. For me, I now need to make sure I or my feet don't get cold or I could have a rebound flare. But it does settle down on its own pretty quick, and I haven't needed fans, cold water soaks, or other desperate measures since I started the protocol. I can actually take hot showers now! Now if I'm having a flare, a short warm water soak actually helps. Nobody knows how this may help them until they try it, but it has been a miracle for me. I still can't stay on my feet long, but I'm much more heat tolerant and I actually go for weeks without any measure of flare at all. It has totally changed my existence. I don't feel like I live in total misery like I did before. But like I said, results are individual. Some have seen more results than me, others less. It's something one needs to decide to try for themselves, or not.
Ya, we just nicknamed it "Bob's protocol" so we would all know what we were referring to. ?
bethany8704 bahahahaha! You just can’t stop commenting and deleting no matter how hard you try. This is crazy. You only stalk me. I ignore you until you poke me. Then you get upset I respond to your poking. If you stop there would be no communication between us because I make it a point to not comment to you.
Then why did you delete all the comments that instigated this? Then after you deleted everything you started it back up by commenting a snide nasty comment to me about me saying I had miraculous results and started it back up. Then you deleted that comment also. Look, I am old enough to ignore you and I do. I have no desire to fight with a kid. But please know this, when you follow behind my comments and make nasty or snide remarks I will respond. Always. Even if you delete them.
Stacy S...Yes, indeed! I never would have known about this protocol if not for Bob posting it. I'm so thankful for him!
jeanne3 your so sweet!? This old lady can hold her own, even when someone stalks me. ? But seriously. I get everyone doesn’t agree, especially here lately there seem to be a few in an uproar over Bobs protocol....or even calling it Bobs protocol, but I’m more about state my opinion and move on. But when I’m poked and pushed into a debate I won’t walk away. Love you! Xoxo
Love you too, my friend ❤
glenda54577 thanks so much for asking. We got mom moved to assisted living on Monday. My body must have known I had enough the last two months and fell apart. I've been down with the flu since Monday night. Ugh.....but the feet are still cooperating, thanks to "Bobs protocol" or whatever we are allowed to call it now - lol.
Soaking as we speak.
Lots going on with SFN and overactive nerves. Been thinking of messaging you lately. How about you ?
No, I don't think so. My last mri shows protrusion in L4 and 5 ( been this way 20 years) and the middle of my back is curved so I get it there too. Going to a chiropractor now. Hoping he can help!! I agree the water helps me deal with the heat better.
"contact a professional or speak to a pain specialist" ---- Uh, no, none of them know how to deal with us at all. That's why we're here...
Yeah that's why we're trying to help each other... At least we have a clue. Gotta teach them...
Also, Bob got the idea from a woman and only said that after she commented....
rose8456 yes there were at least two others that tried a variation of hot water. The French woman from here did hot water along with cherry juice. But I had no respect for her when she wanted us to all buy her “treatment” on amazon as a book, or pamphlet. Ugh.
I think at the end of the day it is up to the person to try it, I’d never recommend it as it’s not proven to ‘actually help’ yes your EM may show signs of improvement but you have no idea what damage you may be creating in the long run.
There’s no need to be mean about this all either, we are all here to try to help and encourage one another, Maddy is a respectable source and I value all that she says, as do I agree with it.
Now if people want to go out and try this protocol then go ahead, get as much info as you can, just be aware of what you are doing with your body as this ‘treatment’ can be temperamental.
As for health professionals it’s all about finding the right one, yes many have no idea what it is, but then that kind of comes with a ‘rare’ disease, I think it’s also common knowledge to many.
However I’ll say it again, I’m very glad it has worked for some, but when others voice their opinions on why they wouldn’t try it, there’s no need to bash them, it’s up to them
With all due respect, I would disagree about it not actually helping. It is, in fact, the only thing that has helped me. In addition, there is no cost or side effects involved, like we experience with medication which very often does not work. I have seen absolutely no damaging effects. On the contrary, I have only seen vast Improvement in every way. And I will agree with the statements that doctors often do not know how to treat this. Everything my doctors tried for me did not help. I have not heard of anyone who has done this protocol, with success and over time, indicate that it has done them any harm at all. But, I will state again that this is a very personal and individual decision as to whether to try it or not.
tracy38 I agree, it has been proven to work for many people. It’s been a miracle for me. The only negative I’ve heard is with some who have SFN it May over excite the nerves so they need to use water not quite so hot.
I’ve spent so much money on drugs and even more money on laser, but the hot water works the best and it’s free.
Nothing works for everyone and hot water may not work for some but I do not believe it’s dangerous. If it doesn’t work stop doing it. It IS painful to start. More than painful. Hideous for me. But as you said it’s a personal decision. I know I was terrified to try it.
All treatments for em are personal decisions and if it’s drugs or alternative treatments both can come with side affects and we have to weigh those decisions and what’s best for us personally.
I couldn’t agree more with all that you said Kathy, nor have put it better myself
kathy30064 I don’t think anyone has belittled other for not wanting to do hot water. There have been a few hysterics about those of us doing and endorsing bobs protocol.
As for all the list of dangerous possible side affects of doing hot water, that kind of list comes with every single drug, from Baby aspirin, Tylenol and on down the list. I would not expect a doctor to endorse any alternative treatment or supplement, including hot water. For one thing, doctors don’t like to suggest something they know nothing about, and many doctors do not know enough about supplements, that’s the truth. They no even less about alternative treatments. They do not want to ok something they can’t explain or control or quite simply, make money on. That’s the truth.
That being said, I’m not saying your statement from that doctor is wrong, but it’s not necessarily accurate as fact either. Doctors themselves have different opinions, just because a doctor says something does not make it a true fact. Clearly many doctors have said hot water treatment is ok.
As with all treatments, risks apply. The problem is either side believing only their opinion is right.
I think this is clearly a case of let’s agree to disagree.
I was speaking to Kathy.
And I was speaking to everyone
i sure must have missed something. All I can say is you have been there for so many people. Your words of encouragement and support have meant so much to me as well. I Don't understand why some people feel the need to personally attack you. If they don't like your comments, they should just move on. Personally attacking you should NOT be allowed. People need to grow up!!!!!
I didn't know one of the women who did heat desensitization was the one who was trying to sell us her book. I never got any info on what was actually in the book.
Various members of this group and others have had doctors opinions that this protocol should not do harm. But if you have some other condition besides EM, you may want to consult your doctor about any effects the protocol may have on that condition.
Good point. But Doctors so far seem to know little about EM or SFN, and ask me to share what I know with them.
My feet can handle higher temps now after actively doing the protocol so I don’t need to seek colder rooms. If I’m in a room without Ac like at this kids party yesterday (85 degrees here) and my feet are flaring I just push through as much as I can, I put my feet up in a chair a few times yesterday. I think the premise it’s that one, just try to push your body to to do its own thing. I do use AC at home but I set a normal temp of 77degrees.
Desensitisation is part of CHronic reflex sympathetic pain treatment. Physics have been using touch and pressure desensitisation for years. In arthritis both heat and cold can be treatment adjuncts for years. The only concern is if the patient can’t sense heat: cold and may cause damage unknowingly. Also open wounds and some medical conditions with decreased blood flow are considered contraindications. Personally as long a the water is not burning hot I can’t see a problem and decreased flares are a sign of improvement. Of course if it doesn’t work for you within a few weeks it would be pretty pointless to continue. I have found much relief and my feet rarely flare nor do I need to elevate. Overall heat is a problem as if my whole body is exposed to temps above 27 c for lengths of time I feel ill and very tired the next few days. So I have no problem enjoying my aircon - it seems to give me the respite I need when dashing in an out. I also sleep better with it on. Do Bobs bucket had been a help and I still like the aircon. Try it in a commonsense way as I have destined and I think you find you will soon adjust, that’s the point after all. Start slow if you are nervous, you don’t need to plunge your legs into higher temps first off, creep up and it seems to work regardless.
Oops iPhone typing physiotherapists not physics. I think the other typos you can guess ??
it really helps my nightly flares. cooling agents seem to make it worse; this, ironically, brings about cooling.
I still have my AC on daily while doing bobs protocol. It’s way too hot outside not to. I still swim daily since doing bobs protocol. I still sit with my feet up in my recliner. I quit all other cooling methods however the very first week was so awful I admit I used my fan briefly a few times.
Bobs protocol is safe. If you have SFN you may not want the water as hot so it doesn’t over stimulate the nerves, but as mentioned, plenty of doctors say it’s safe. It’s hot water, nothing more. If it doesn’t help you then you stop. However it’s not without pain in the beginning. That first week was pure hell and almost all of us doing it has said so. You can use bobs protocol in the search box here in the group to read many posts on it.
Thanks Stacy. Your story i have read and is one that inspires me.
ruth239 awe, I’m glad if it encouraged you. I speak very very highly of bobs protocol but if you had been around prior to my doing it and read my posts you would have seen how very very reluctant I was to try it. It took months. It terrified me so much and I bugged everyone, including Bob, asking a million questions. I will forever be so thankful I tried it. I’m not cured but I got so many little miracles from it that it has improved my life in miraculous ways. When I think of my life before bobs protocol it makes me cry. I know it doesn’t help everyone but if my testimony helps someone have courage to try it and it helps them, I’m so very happy. Message me anytime for encouragement, I had a few friends from here that were my strength, like jeanne3, without her messages and encouragement I would have quit two days into it, the pain was so bad.
Thanks Stacy, I really appreciate that. My situation is nowhere near as bad as yours was, but still is disabling and terrible and seems to be getting worse. So I must be at the asking the questions stage.
My granddaughter hasn't been diagnosed, yet; but, her symptoms match. We started her on Bob's protocol as soon as we realized what she might have. If this protocol will keep her from getting flares; keep her from getting worse; and, keep her off of all those medications, I am all for giving it a try. A soak, nightly, is a small price to pay to keep EM at bay. Think about this. Most people seem to start mildly; then, it gets worse. It escalates until the slightest issue sets off a flare. Cooling helps for immediate relief. But, it causes a rebound effect. The more you cool the flares, the more frequent; and, intense they become. The more you try to stay cool, the sicker you get, until you can't leave you air conditioned house; nor, move away from the fan. You have to do the opposite as he suggests. It is like allergy desensitizing. The more you try to stay away from an allergen, the more easier, swifter, more intense your next reaction becomes. Allergy desensitizing involves exposure to very, very small amounts of the allergen. It is, then, slowly, increased. As long as you take the desensitizing agent, allergy flareups decrease substantially; or, do not flare at all. If you read his protocol, he soaked in just warm water for months before he even worked up to the hot bath. I do not suggest going straight to hot water; or, going to hot water too quickly. I believe he said no more than 110 degrees. And, I can see why cooling a flare defeats the whole desensitizing plan. Just as if you missed an allergy shot. I do not have EM; but, I do understand, totally, what sufferers go through. It is a living horror. To me, though, isn't it worth giving this protocol a try? Isn't it worth a chance to get your life back? But, do it so slowly as he suggests; and, plow through that week of hell. Make your house warmer, stop using the fans, don't cool a flare, if you can. Some people can't; and, try to do as minimal intervention in a short amount if time as possible. Don't rush this protocol. The secret seems to be a slow, slow, slow with gradual increases, just like allergy desensitizing.
Thanks. I hope this works for your granddaughter. I get trying not to cool a flare. But is putting my feet up " cooling a flare" I wonder?
You hit the nail right on the head, Patti!
Ruth Ragless from what I have read, some people have put their feet up to help them get through that horrible first week; and, as short of a time as possible. I am sorry. I have no personal experience to fall back on. Everyone has to do what feels right for themselves. I keep my fingers crossed as my granddaughter hasn't had another of her vulva flares since doing this protocol. It is going to be so hard not to ease her pain. I, honestly, do not know how I will do. It will tear me apart to see her suffer, knowing that I can help her pain in the short run. I just will have to keep my eyes on the long road.
I did the cruise too! Small world! ?
I love Star Trek! I loved the Star Trek at Hilton hotel in Las Vegas! And the ride. Was so sad to see it go. Went during a Star Trek convention by accident one year and it was amazing.
I would have loved to have done the Star Trek Experience but I was too broke back then. ?
Violet Harskamp if I get a flare and it won’t go away or seems to intensify, I will actually soak in hot water now. It will make both feet red and hot, some swelling, but it’s like a reset button and it gets better and stays good. It use to take an hour or two to reset or calm after the hot water but now after doing hot water for so many mo the it can be less. 30 min to an hour now, and less painful now.
Me too, Stacy. When a flare starts up, it usually doesn't last long and is not bad anymore, but if it seems more persistent I can make it go away with a warm water soak. Who woulda thought it? ?
it’s crazy I use to run to cold water now I run to hot. Oxymoron ?
Wow I am so interested that you both are using hot water to calm flares now. Thanks for sharing.
Tracy Brown me, too. I missed it. (The Star Trek Experience). Very disappointing.
I never thought I’d do it but I’ve been doing it and I am noticing less flares. At least now I’m resistant to cooling techniques rather than going to them right away. It’s winter here so it’ll be interesting to see what happens when my world heats up. Still sleeping with the windows open and a couple of top sheets—no blankets—it’s in the 30s/40s at night, though. And I have so much damage that the color and circulation and my skin and nails are pretty terrorized. Still experiencing flares and burning but way reduced. Time will tell me more...
Thanks. So what happens to your skin colour and toenails?
I experienced an improvement in skin condition, too. My feet were in terrible shape, with chillblains, blisters, and very dry with deep cracks. After doing the protocol for a while I noticed my feet are looking normal again, with no chillblains or blisters, and no more deep dry cracks. So this was an added bonus. ?
Ruth Ragless mottled on my shins and my feet go from red to purple—dark—and my toes are always always very bright red no matter how they’re feeling. The nails are just weak and not clear, kinda dark a little yellowed, not great to look at. I file and pedicure them all the time so they’re sorta presentable to the world.
I am wondering if anyone with neuropathy and Raynauds have done this with success? I have been way to nervous to do this.
Me too. ?
Yep. It's not as severe as others on this group though. Just be quick to not let your feet get cold right after the water and do not enter the wter while flaring. Like the shower. I have sfn too so I get a little lost between the 3.
I'm not recovered but I'm not as miserable when my feet flare.
For those looking for Stacy, she has been blocked from the group. If you want to contact her, let me know and I'll get in touch with her.
bethany8704 and your return of dialog was nicely done? I don't think so. Yet you were nasty then deleted your comments before admins could see them. Well some of us did. You succeeded in getting her banned. I'm glad you're happy. I'm done with this conversation.
Is that forever?
WEll maybe someone should start a new page for this group! Nothing says they cannot! I read the nasty comments too! I mean really?
Seems there is another page called EM Warriors
i feel your comment is "rude behavior". Who put you in charge of telling people they can leave the group? Some of us have been here for years supporting others in this group.
jeanne3 I agree 100%! I have learned a lot from her as she was always more than willing to share her thoughts, experiences..etc.. she has helped many here including myself and to see this crap unfold like this is wrong..she’s not even here to defend herself and still the comments keep coming!
I learned a lot from Stacy, I read her posts and shared her ideas. She was a big help to me when I first found this group. And just so you know, screen shots are life saver, I do have the screen shot of the nasty post by Bethany telling me " feel free going to another group"
Yes, she posted all her remarks then deleted them
Time to make deleting a post (unless it's an obvious accident) to make yourself look better a banable offense.
For the record, I deleted my posts because I was done with the conversation, one woman in this convo thought it was ok to start calling me names but thought it hilarious to block me so that I didn’t see it
I can still see all of Stacy's comments I do not see her calling anyone names. I see Stacy's comments but, do not see Bethany's because they were deleted. All but the one where she was rude to me. I have that screen shot.
Which is exactly why many groups do not allow dirty deletes. He said she said is hard enough for admins when they can see it. Once something is deleted no one can tell.
I still have screenshots of all that I said, I’m not one to deny what I commented and would gladly say yes I said that or no I didn’t, no ones hiding... as I said, I deleted my comments because I was done with all the bickering, Stacey’s gone, she’s not coming back, there’s no point arguing over it... Move on already
Moving on also means coming up with a solution to prevent the same from happening again. I don't know either of you, or have an opinion on either of you. I do have an opinion on the easiest way to avoid this in the future, without depending on trying to decide who's lying. Everyone is protected.
There won’t be another event like this in the future, I’m done with it all, I’ve turned a new leaf, it seems they have to aswell, there’s no need for this to continue. Have a great day
You make the assumption that this could only happen with you few people. I'm not talking about you guys, obviously.
Swimming is great exercise for you. I wouldn't stop doing that. But maybe you can start slowly turning up the temp in your home while using warm water and trying to build up heat tolerance.
Is this protocol something I can show my neuro on Monday? Or will a doc just dismiss it?
Violet Harskamp Will do!
It wirked for quite awhile for me, It recently stopped working and now is worsening my flareups.
Sorry to hear that, Corey ☹ were you soaking every night? Do you have sfn?
Small fiber neuropathy? Its suspected along with this that and everything.
I think this is why it’s labelled unpredictable but also not very safe. Are you on any meds Corey..? Or anything changed in your life since it’s started going bad..? In my opinion I think you should stop the protocol as there are other things that are scientifically proven to help. If you want more information feel free to contact the em warriors page ☺
corey5 i don't know if I agree that it was labeled (or by who) "not very safe" - you did get some relief from it. I guess making notes of changes in your life like weather, stress, diet, and see if that made a difference. I know many reach a plateau where it stops helping - sorry it's made things worse. Anything you can pinpoint?
it's not that it made things wors, hell it staved EM off for almost 10 years, I guess the Ery just did what ery does best.
my doc(s) never heard of this approach but also didn't caution me against it. they did suggest mild cooling which makes mine worse when the cooling agent is removed. it's almost like the vessels are overreacting to heat back to normal, but of course, get very hot instead. thermostats gone bad...if only it was as easy to replace as a furnace thermostat.
I think it all depends on the person, I have heard from a respectable source that this isn’t good for the body. Yes it may help some but you have no idea how it could affect your body 1,5, even 10 years for, now.
I’m glad it worked for you and many others for so long, it’s a shame that it suddenly has stopped. Epsom salt has been known to really help EM aswell as many other illnesses.
I agree with you Suzanne about the thermostat thing, I tend to say my bodies thermostat doesn’t exist having both Raynauds and EM lol
Suzanne and Corey o hope you find something soon that helps your EM and continues to help it in many years to come
I’ve never heard of anything negative about Epsom salt, it seems to be a multi tool for so much. I’d have to do more research on it, but as much as I have researched it has no horrible side effects (as far as I’m aware) and has helped so many. Obviously it depends on person to person as each of us are different, however if it was helping you and you found comfort in it I’d carry on as it also can depend on how you perceive it, the brain is a powerful thing and can sway your bodies reaction based on thoughts alone
Suzanne Barger Brach Epsom salts made mine worse. Use caution when using them - they are vasodilators. That's why some people do well with oral magnesium and others don't
There are many articles about this, however none specialise in that of helping EM pain (which differs from person to person), which is why I personally wouldn’t trust them.
Have you contacted the em warriors page..? They’re amazing in helping people out, giving advice where needed. If I was you I’d give them a shout, no harm in trying ☺
bethany8704 yep. Thx. On multiple help pages. Need it all. Right now I signed on with a neuropathy program with California doc. Since. Have autoimmune issues as well, he’s taking a customized approach to it all. Will certainly let everyone know if it works.
I hope you get the help that you need
And btw, I can bear any one of them individually, but em flare with small fiber is the worst.
I can’t even begin to imagine what it feels like, my thoughts and prayers are with you ?
ruth239 on behalf of the admins I have to say I am so sorry for what this post has become in our group with the bickering. That is not what this group is for and that is not what our group is about. We will turn off commenting on this post until tomorrow (Monday 3/5/18)
I am sure some have seen the added stress in this group and again if you dont like something please dont attack another for their beliefs. We are ALL in this TOGETHER and we have to get through this together but surely we do not all believe in the same things and thats OK!
As admins we appreciate people being our eyes and when there are inappropriate things being commented between anyone its best not to engage and contact an admin ASAP. The screen shots were very helpful in address the last situation and we are ready to move on and move forward and we ask that you all do that also. Thank you in advance, - Heather, kellie872 and tammy89514