Mental expectations can play a major factor in pain response. A review of fibromyalgia drug trials found that 72 percent of people dropped out of clinical trials for severe side effects when given placebo. That is what’s called the nocebo effect.
plural: nocebos
: a harmless substance or treatment that when taken by or administered to a patient is associated with harmful side effects or worsening of symptoms due to negative expectations or the psychological condition of the patient
Pain is subjective but I’ve been told I have a high tolerance. I’ve broken my leg in 2 places, arm in both bones, 3 fingers, blew an ACL (now that hurts and post surgery demanded morphine), had major neck surgery for cancer (again morphine pump post surgery) and EM. I’d put EM up with any of them. Before Lyrica it was bite down on leather type of pain. With Lyrica there are times when it still takes my breath away. When I broke my ankle, the EM was way worse than the break pain. So if yours is a 4-5 unmedicated, not sure what you have, but it’s nothing like what I have. There is no subjectivity in that. I broke a finger that was sticking out sideway. Grabbed the finger, tapped it up myself and drove myself to the ER. That’s 4-5 pain. EM is way worse than that. Maybe it’s not a 10 if you call severe burn a 10, but it’s a solid 8 1/2. Hell, if mine were a 4-5 I wouldn’t care. I’d call it good and take some advil.
The pain level you are describing is more commonly associated with CRPS. My doctor is an anesthesiologist / pain specialist. He has experience treating both CRPS and EM. He initially thought I had CRPS. I told him, “no, I don’t think my pain level is high enough for CRPS.” He then ran a differential diagnosis. He ordered a bone scan to look for wasting associated with CRPS and a sodium channel blocker prescription for EM. (Erythromelalgia is caused by a mutation of the sodium channel NaV1.7.) The bone scan came back normal, but the sodium channel blocker turned off my symptoms within 24 hours. Thus, he concluded I had Erythromelalgia and not CRPS.
I should have been more specific. I have a good friend with CRPS so am well versed in it. This pain level is not constant for me. In fact most of my flares aren’t at this level. I can usually catch the bad ones and cool off ahead of it. Those really bad ones my toes go from red to purple and it just hurts like hell. I’m in a bad spot now because of this broken ankle, but normally my day has very little to no EM during the day unless I get out in the heat or exercise. I lift 3 days a week, go hard for 20-30 minutes and know I’ll get a flare, but than blow the car A/C on the way home and quiet it down. So my EM doesn’t bother me too much during the day. Almost every evening it’s going to flare around 10:00pm. If I keep it cool I can keep the pain manageable and cool it down before bed and it’s not too bad. Where I get the really bad pain is some nights I’ll wake in a full blown deep purple flare. Not sure why this happens. Just does. In those cases only thing that brings relief if cooling. In CRPS, the pain is usually pretty constant and cooling wouldn’t fix it. So I should have been more specific. I’m not near as bad as others on this board in that I probably average 1-2 hours a day in flair and 1-2 of those really bad flares a week. That’s not CRPS. But the pain during those really bad flares is CRPS like. Hopefully that brings more clarity. I’m just surprised you never flare above a 5 because most I’ve talked to with EM do get these really painful flares sometimes. Some have them all the time and those usually have to take heavy drugs. I’ve found hydrocodone does very little for bad flares. Lyrica is much better but still won’t knock them out. Just my experience.
Back to my ankle, has anyone ever sprained or broken an ankle and did it drive your EM into hyper drive on that side? I don’t have CPRS as it’s not constant at all, just comes on in the evenings or under exercise just like my old EM. Just normally this time of year my EM is not too bad, but with the swelling just that side is much harder to control. Driving me crazy.
I am both. I have EM and Raynauds and this protocol has worked well for me when no medication so far has not been successful for me. I do make sure that my Raynauds is not active before soaking. If it is in parts, I get that area warmed up before soaking.
It’s a word he chose but Bob still has to soak daily. He has had zero flares since this and goes out in hot weather and wears shoes and socks all the time with no flare.
I would start another post specifically on your broken ankle ankle as it might get more responses. I always thought myself that if I broke an ankle it would flare more.
But words matter. The word “cure” has a very specific meaning.
Inherent in the idea of a cure is the permanent end to the specific instance of the disease. When a person has the common cold, and then recovers from it, the person is said to be cured, even though the person might someday catch another cold. Conversely, a person that has successfully managed a disease, such as diabetes mellitus, so that it produces no undesirable symptoms for the moment, but without actually permanently ending it, is not cured.
What you’ve described are managed symptoms, not the permanent end to symptoms. A cure necessitates no further treatments. To be cured, Bob would have to demonstrate he could stop soaking and not have any symptoms of disease.
So I really want to try this in another month once my ankle is fully healed. What I’m struggling with is how long do your flares take to calm down unassisted. I’ve waited up to an hour or more and it’s never stopped. I do think they would once the night moved to day, but how do you 1) manage the pain during a 3-4 hour flare and 2) manage sleep. Also Bob you said you laid down to wait for the flare to subside. Mine tend to do better if I get up and walk around vs continue lying in bed when I wake with a flare. Wondering if that makes any difference.
I work a pretty stressful job and I’m already not getting enough sleep. If Bob is watching, how did you manage loss of sleep while you waited for your flares to subside on their own and at about what time in the night did they subside? I do realize sometimes what makes the least amount of sense is the thing that works. Life is just like that sometimes. But I’ll be honest this scares the crap out of me. I’m thinking I need to be in a mental state that says… OK this could really work vs holy crap… I’m going to suffer so. I see a specialist at a teaching hospital locally in Dallas 1st week in April. I’m going to ask his opinion and then probably give it a shot. Thinking I might need to take like 2 weeks vacation to get some sleep during the day and not have the pressure of work. Thanks for your courage to try something so out there.
And sorry to be a bother, but do the people that have tried this also have any underlying issues like SFN. I haven’t been tested in a decade, but back then I had 1/4 the nerves at my ankle as I do at my hip. Sure it’s worse now as I get shock zaps from time to time from my feet and ankles. Just wondering if SFN would have any effect on this protocol.
I can tell you that I too was very, very scared to try this. I was in a
flare 24/7, using cooling packs and fans all day and night and elevating. I
read so many success stories with this and life being better, I told myself
try it ! I dedicated one week and told my husband to not expect much from
me, maybe I’ll cry, be up all night, etc. etc. The first four days were
the hardest for me. Everyone told me stick me out and give it one week. So
I decided what if this works? I won’t know until I give it a week. Can I do
that ? Yes for a better life as I was already suffering badly and confined
to my house with elevation. I am so glad I did. I cheated with the fan a
few times the first four days. What I found out was the elevation was
making it worse. So I reclined instead. The first week I was in full flare
but I always was anyway. Everyone is different as far as how long the flare
will calm down. Bob and others do the soaking at night. I do it in the
afternoon or mornings. It depends on your schedule. After the first week,
the soaking became easier, less painful and less time to calm down. You can
talk to your doctor first about SFN and ask his/her opinions. I know others
have tried it with this. You can start at a luke warm temp like I did. Then
gradually increase when you feel comfortable doing that. I don’t know of
anyone else who turned their heat up in their house. I did not. I only do
the soaks. I was able to wear boots driving ! I was never able to do that
for about 2 years now. I drove with ac blowing on my feet and barefoot,
even in the winter time. You can always join the facebook private groups
and read the stories on there and talk to others with SFN that have tried
it or are doing it. Bob does belong to those forums but I do not believe he
has joined this one. I hope this helps. Wishing you well.
gwadley - If your doctor gives you the okay, I highly encourage you to give this a shot. I have been doing this protocol for a month now and have experienced tremendous improvement. For example, since my EM began 4 years ago, every time I exercised my feet would swell, turn bright red, burn, and get pins/needles. Now when I work out my shoes feel loose because my feet are no longer swelling. The burning and pins/needles have stopped. At most, I get a little tingling or a fuzzy feeling - nothing painful. When I get home from the gym and remove my socks and shoes, my feet are a fairly normal color and I can actually see my bones!
Last Saturday I was out and about for 6 hours in socks and shoes and did not have a single flare. Last night I had an evening meeting - same story.
I actually wear socks around the house now when my feet start feeling cool.
Like Paula, I have found that elevating tends to provoke flaring now. My feet are much more stable when they are down. That is the complete opposite of how it was before I began the desensitization. I did increase the temperature of our house by 8 degrees and have tolerated that just fine.
As Paula mentioned, the soaking becomes easier over time and the recovery happens more quickly. It really helped me to read all of the posts on the private facebook group to get up my courage. I am so, so glad I did. I am sleeping great - no flares at all. It really is amazing and I am so thankful.
Paula, 1st thanks for the reply. I’m upping my Lyrica from 400 to 600 a day which is max dose so going to let that kick in 1st. I don’t flare all the time and really have 2 types. One just is red/hot/painful toes/fingers. Those I can manage. Other is when it really blows up to purple toes and it hurts like the dickens. These I get at night and I just have to cool to not jump off a bridge. Before Lyrica I was in a really bad place. Those I’m not sure how to push through. I don’t get them every night. And I’m not sure they would relent until the morning. Did you get those type of flares? Did you just use distraction to deal with the pain, or take harder drugs.
Actually, no drug has helped me whatsoever yet. I do get the red hot painful burning and I do also get the purple/black mostly for me toes and feet. I also have Raynauds and I always just assume that black and purple is from that or it is from the EM becoming less active in that spot. I’m not really sure which one. The nights were the worst for me until I did the protocol now they are not as bad and actually sleep a little better too. I do use distractions. When I do the soak I listed to Charles Stanley for his twenty minute radio sermon. Then I know my twenty minutes is up I shower in a hot steaming shower and I sing. Yup I sing two songs and know that my time is up. Distraction always helps if you are able to do it. It does take practice. It is all very debilitating and painful. I too felt like I wanted to jump off the bridge. Like my foot was literally on fire and I had to hurry and put it on something cool and during that time I could not concentrate at all. It was aweful.
I cant seem to find the protocol outlined in this forum… Is it just what you wrote - “hot soaks twice a day - morning and evening - for 30 min each time. Currently, I have the water temp around 110F. I follow the soaks with a 3 min hot shower.”
Can you pls prompt me in the right direction? Thnx:-)