19 pm

Hi,

Every evening around 19pm, I started to have cold with chills throughout the body and at the same time my feet become more red and hot.

Is it the same for you?

Hi Melodie,

Interesting that you mentioned 19pm...I believe that would be 7:00pm in the evening for me and although I don't get chills, usually right after our evening meal (aound 7:00pm) my feet turn very red, like a bad sunburn, are hot and burn like fire. I keep asking my wife, what is it about the evening time with this EM? Although the time might vary by a hour or so, it is every evening this happens to me. The redness and burning will continue until I take my Gabapintin at 10:00pm (22pm) to get ready for bed at 11:00pm). The Gabapintin eliminates most of the redness and some of the burning but at bedtime, I take three 650 mg Tylenol which eliminates all of the burning so I can sleep for 4-5 hours at which time, the burning wakes me from sleep. It's a vicious circle for me I'm afraid. I hope you get the chills and redness under control.

HI Melodie.

This is a very common problem for EM sufferers. However, few of the articles talk about the temperature regulation problems we tend to have. For me it has been 20:30pm for about 2 years. Could almost set my watch by it. Mine starts with mild chills as my feet start tingling. Then as my feet get hotter, my chills get worse. I do not plan any evening activities because of this issue. If the chills get too bad and my feet get really red and swollen, I find that misting my feet with a spray bottle and turning on a fan really helps get it under control. Or if it's extreme, I can place my feet in baggies and soak my feet in the bathtub in tepid to cool water for about 20-30 minutes and this takes care of both the chills and hot feet. However, this tends to temporarily cause greater chills and in anticipation I always have a warm hoodie available until the redness abates.

Hope this helps,

Dragica

Hello Melodie,
YES! At night time between 8and10pm, My feet and legs flare up, getting VERY red and even hotter!! Then I get the chills through the rest of my body. This used to happen off and on. Now, it’s a nightly occurrence!! I will wake up during the night and my upper body is SO cold, I feel like I’m freezing!!!
My feet and legs are still swollen and red, also!! I have had EM for 11 years now and I’m exhausted!! Maybe someone on this sight will have an answer for us!! Torie

Yes! My feet turn beet-red like sunburn between 8-9 pm every night. I don't know how my feet have any idea it is nighttime, since my windows are totally blacked out because of Migraines. While I put my feet in ice water, I'm shivering under a blanket--even in the Texas summers.

Hello..Of the others that have replied, I'm the only one that does not have chills but the other symptoms we all have in common. I.E. sunburn like redness, burning, and swelling. All of us have these flare-ups in the evening and I'm wondering why that is? Our feet certainly don't know what time of day it is or do they? I ask myself what is it about the evenings that is different than at other times during the day? For my lifestyle, it is activity in that I try to be as active as I'm able doing whatever indoor chores need to be done. So I am up and walking around a good bit of the day off-and-on. My daily activities slow down starting about 17:00 and after dinner, usually around 19:00, I am mostly seated watching T.V. or reading. It is then, that my flare-ups start and continue until I take medication to treat the redness and burning. I have had EM for about 2 years...how long have you had EM?

Hello everyone-
I forgot to mention that although I have had EM for 11 years now, I didn’t start having the chills in my upper body until 2 years ago. I have tried changing my schedule and my evening habits but, I still have a flare and chills that start between 8and10:00 each evening. The chills do not go away until breakfast. I have gone to every different type of specialist my Doctor recommends. I am so weary and tired out right now, I am taking a break from going to anymore Doctors right now. I pray for a cure or a medication that can relieve the pain. Torie-

Hi all,

Dr. Jay Cohen offered an explanation for why EM symptoms worsen at night in an article he posted online:

http://medicationsense.com/articles/2013/biorhythms.php

Best wishes ~

Nwgirl...thanks for the link to Dr. Cohen's article...some really good information.

Hi, You said " until I take medication to treat the redness and burning". what is this medication and did your flare-up stop ?

rondp43 said:

Hello..Of the others that have replied, I'm the only one that does not have chills but the other symptoms we all have in common. I.E. sunburn like redness, burning, and swelling. All of us have these flare-ups in the evening and I'm wondering why that is? Our feet certainly don't know what time of day it is or do they? I ask myself what is it about the evenings that is different than at other times during the day? For my lifestyle, it is activity in that I try to be as active as I'm able doing whatever indoor chores need to be done. So I am up and walking around a good bit of the day off-and-on. My daily activities slow down starting about 17:00 and after dinner, usually around 19:00, I am mostly seated watching T.V. or reading. It is then, that my flare-ups start and continue until I take medication to treat the redness and burning. I have had EM for about 2 years...how long have you had EM?



Melodie said:

Hi, You said " until I take medication to treat the redness and burning". what is this medication and did your flare-up stop ?

rondp43 said:

Hello..Of the others that have replied, I'm the only one that does not have chills but the other symptoms we all have in common. I.E. sunburn like redness, burning, and swelling. All of us have these flare-ups in the evening and I'm wondering why that is? Our feet certainly don't know what time of day it is or do they? I ask myself what is it about the evenings that is different than at other times during the day? For my lifestyle, it is activity in that I try to be as active as I'm able doing whatever indoor chores need to be done. So I am up and walking around a good bit of the day off-and-on. My daily activities slow down starting about 17:00 and after dinner, usually around 19:00, I am mostly seated watching T.V. or reading. It is then, that my flare-ups start and continue until I take medication to treat the redness and burning. I have had EM for about 2 years...how long have you had EM?

Hi Melodie...at bedtime, I take two 300mg Gabapentin and 3 Tylenol. I also started taking Magnesium about a week ago but I haven't seen any benefits yet. I'm not sure how much I should be taking of the Magnesium so I am doing more research. Also, as a practice, I sleep with a fan blowing directly on my feet and that seems to help a lot.

Hi rondp43 My English is not good but when I read the SDL translation, it is incomprehensible ! I have to find a very good translator !!!

I started taking Magnesium about two week ago but, as you, I haven't seen any benefits yet.

My bedroom is climatised to 64.40 °F : if I sleep with a fan : my feet become like Ice, as with Raynaud's desease ...

Do you know Phytotherapy ? I started taking Witch Hazel capsules about a week ago and it seems to be a good medication

At bedtime, I take two 30 mg Cymbalta and 1/4 Clonazepan. During nignt, when I have burnings, I take one Paracetamol with codeïne which is very effective during three hours.

I hope you will understand my bad English !!! ...

Hello Melodie...You have been diagnosed with EM is that correct? I have been to two doctors and neither one has ever heard of EM. I am 100% certain I have EM but I until I am actually diagnosed, I can't get any prescription medications for treatment. I am taking Gabapentin for nerve pain as a result of a spine injury about two years ago and it just by chance helps my EM also. I am not familiar with Phytotherapy at all. I have not heard of anyone taking Witch Hazel capsules for treating EM but I'm open to trying things that others find as a good treatment. I have also not heard of anyone taking Clonazepan for EM. Do you know what 1/4 Clonazepan would be in milligrams? My bedroom temperature is set at 71 degrees and the ceiling fan helps me a lot and my feet do not become too cold.

It's definitely the same for me. So i have to put a blanket on the rest of my body but keep my feet exposed, but they're still too hot still. I try tor refrain from icing them because I know it damages the skin, but nevertheless YOU ARE NOT ALONE MELODIE! <3

Melodie...I sometimes feel like I'm all alone in this struggle. I am in much pain 24x7 from my spine injury and get little relief at all. I have just a few good days and unfortunately the bad days are becoming more frequent. Until the EM started, I had only the back pain but now the EM is getting worse and I have no relief except to take Gabapentin and Tylenol. These do not stop the pain but give me enough relief to sleep for a few hours. My struggle is to find a doctor that knows about EM. I would very much like to know if the Witch Hazel capsules help your EM. Please keep me informed as you move forward...thank you so much for your information. God Bless......

I just figured I'd chime in here because I've had success lately and am finally seeing a doctor experienced with treating EM. Last month I was told by a dermatologist (who had treated EM once before) to try a SSRI or SNRI (like Cymbalta). My new doc (with more EM experience) vetoed that. He flat out said, "we're not trying that first." He put me on a sodium channel blocker instead (Mexiletine). Its worked well. It's the first prescription I can say without question has alleviated my symptoms.

The doc is still doing a differential diagnosis between EM and CRPS. My nuclear medicine bone scan showed no evidence to support CRPS. He said that didn't rule it out and just made CRPS less likely. I would think the fact I have responded to the sodium channel blocker probably means I have EM, but the doc has yet to say that.

It's important to find a physician who is experienced with every possible condition you might have, so that they can do a differential diagnosis and reach an educated conclusion. Initially I was seeing doctors who knew no more than I did. That did not work. It was really good to finally be evaluated by a physician who could speak with authority and knew more than I did from reading the internet.

The doc also prescribed a compounded cream that includes ketamine, gabapentin, clonidine, and ketoprofen. I think the cream is beneficial, but I am less certain on that.

Hi CarterDK...thanks for "chiming in" :-) My problem now is finding a doctor that knows something about EM. I have been to see my primary doctor and one foot specialist and neither one knew anything about EM. I'm not sure where to go from here. I have been searching for any doctor within 25 miles and now I'm going to send their office a email asking if they can treat EM. I will be sending out over 150 emails so this could get interesting. LOL

HI folks.

I just wanted to respond to CarterDK's post. Carter, I am so pleased that you have found a medication that helps your EM--that's great!

I just wanted to clarify that one of the reasons that doctors are unwilling to prescribe Mexiletine right away is because of its potentially dangerous side effects. This is why other drugs with less serious side effects are tried first. Also Mexiletine is useful for only some people with EM--it depends a lot on the location of the defect(s) causing EM symptoms. And I believe that I have read that for others this drug has made their symptoms worse. EM is a mixed bag--we're all very different--this is why one drug combo works for some and not for others.

Cheers,

Dragica



rondp43 said:

Melodie ... Je me sens parfois comme je suis tout seul dans cette lutte. Je suis dans une grande partie de la douleur 24x7 de ma blessure de la colonne vertébrale et reçois peu de soulagement à tous. Je dois seulement quelques bons jours et des mauvais jours, malheureusement, les deviennent plus fréquentes. Jusqu'à l'EM a commencé, je devais seulement le mal de dos mais maintenant l'EM fait qu'empirer et je dois sans relief, sauf à prendre la gabapentine et le Tylenol. Ceux-ci ne cessent pas la douleur, mais me donnent assez de relief pour dormir quelques heures. Mon combat est de trouver un médecin qui connaît EM. Je voudrais bien savoir si les capsules Noisette Witch aider votre EM. S'il vous plaît me tenir informé que vous avancez ... je vous remercie beaucoup pour votre information. Dieu bénisse......