I've only recently been told that EM is what I have, so up until now I've really had no idea what are the right things to try to do for it. I've been kind of making things up as I go.
So I was wondering are there any particular dos and don'ts? Anything that might be harmful, or anything that might help.
The first thing I tried when my feet started to burn was to put them in cold water (I've read now that that's a bad thing to do). After a few days my feet started to swell up huge. I was alarmed so I stopped putting them in cold water and tried elevating them instead. That helped a lot, it reduced the burning and they did return to normal size after few days.
I kept them elevated around the clock for a very difficult few weeks, after which they'd improved enough that I could move around the house on the floor.
And that's pretty much how I've been for the last six months. I have to keep them up most of the time, but I can tolerate moving around on the floor for short periods and can stand up long enough to get on a stool in the kitchen for example, then I bring my feet up on the counter so they're elevated again.
I'd be interested to know if it sounds like I'm doing the right things or should be doing something different.
I find elevating helps immensely. As soon as I try and lower my feet to the floor you can feel them swelling up so fast it seems as if they will explode! I put them back up and they still burn but the exploding sensation goes away. Yes I too have heard cold water is bad as is ice. I found these things called chilli pads online. You wet them,ring them out , then wrap them somewhat snugly on the burning area. I don’t know if these are harmful at all but I have only had great relief from them and no worsening of my symptoms. I would ask others if they have tried chilli pads and how it works for them. It works through evaporation. Imitating sweat to cool your skin. It’s not like cold water because it feels cold but really you soak them in slightly warm or room temp water and it’s not very wet so it won’t break down your skin (to my knowledge and experience) like soaking in water does. The other thing I do and I do this the most is simply making my house colder. I can’t work because of this so I am home all of the time. I keep it at 63 unless I am going to try do do some housework then I set it to 60. At that temp I can usually do light housework for about a half hour or so before I have to rest. I find it is always easier to add clothes if I am too cold than to try to get my house colder when I burn. Sometimes I might have I light jacket on but my feet bare. Sometimes my knees get it so bad I have to keep it cold and drape a blanket over me below and another above the knees. It depends on what part of my body is acting up at the time. I hope this helps. Please let me know if you find anything that really helps you too. I am always looking for more and better ways to handle this than making my husband freeze! Take care.
When my feet are at their worst I use a cool flannel to slightly down them then direct a dan on them. The fan is a lifesaver, I have also been known to use a spray bottle of cold water and the fan to cool them. Elevating them is also helpful as is sleeping with your feet out of the covers with the dan directed on them but away from your body. I can’t get too cold either so have to keep my room at a stable temp and just cool my feet when they flare.
Thanks very much for all those tips. I like the sound of chilly pads, I'll definitely try to get hold of some. I'm keeping the room that I spend most of my time in at a low temp, thank goodness it's winter here. I just put socks on when I'm with other people, I think seeing my feet makes them worry.
I'm really sorry to hear to get it lots of other places, must be very difficult to know what to do with yourself when that happens.
It makes me wonder about some problems I had before my feet. I had heat in various parts of my body, mainly my back and my lower legs. My back and knees froze up, so my doc told me it was a kind of arthritis. I think he's probably right, and the erythromelalgia is secondary to that. I mean EM can't make joints freeze up can it?
Isn’t it though? Brilliant to be able to talk to others that are going through the same thing. I don’t know why it took so long but I didn’t find this site until I had been suffering for well over a year! Then you come here and there are so many tips and tricks that really do make your life easier. I’m glad you found us sooner than later. Let me know if you try the chilli pads and how you like them if you get a chance. Take care
Are you still following up with a rheumatologist for your other medical issues? I have a non specific connective tissue disorder that my EM may be secondary to. I keep hoping if we can get my rheumatologist issues under control maybe my EM will follow. I know there is no proof of a connection between EM and connective tissue disorders but I believe there are quite a few of us that have both. My doctor says it could still be a fluke but there is no evidence either way. I just keep hoping they are related because it tends to give me more hope that I can at least control the EM via controlling the connective tissue disorder. I’m keeping my fingers crossed! Take care and stay cool!
Yes and the rhumatologist has a treatment in mind, though he hasn't started with it yet, he's just trying to treat the EM at the moment. So what you say, that treating the arthritis might treat the EM, is an interesting thought.
I think they must be connected somehow for me too. The arthritis started suddenly and went on for a few months then just when I thought it was getting better it suddenly changed into this EM foot problem.
Me too ! I had the same thing. I started with unexplained joint pains then I got a blood clot In my leg then gastrointestinal problems. That whole span was 3-4 months. 3-4 months into the beginning of my other problems the burning started. Very interesting that your arthritis pain started a few months before your burning too. Funny we are doing the opposite focusing on the autoimmune and the EM treatment is secondary. My EM pain is do much worse but maybe she is choosing to focus on the autoimmune because it stands a better chance for successful treatment. They can’t try to treat everything at once with meds then they won’t know what is and isn’t working. I understand. Do you mind letting me know what your doctor starts you on? Thanks. Take care
Thank you Mick. I sure hope so. And you as well. Just when I want to feel bad for myself I read about someone else that seems to have it even harder. I just saw there is a new mom Here with a 3 year old with this!and another mom with a 10 year old suffering too! Could you imagine? Well I like most of us just figure out the best ways of dealing with things and you get a system down of do’s and don’ts. Even if you can’t cure all going on just getting a system down helps to cope immensely. I haven’t seen too many responses here with tips for you. Have you found tips on other posts? I try to only post on my experiences but I would be happy to look through some other posts to see if I can find some more advice. Maybe I will find something new for me to try! I can’t work from this so I have plenty of time to research. I will let you know if I find anything good!
The tips I've had have been great, and I'm reassured nobody's told me I'm doing anything that'll make it worse. I've been following the new threads, and gradually working back over older ones. So no need for you to look back for me, though it's very kind of you to offer. It's been quite an education, EM is a terrible thing.
My name is Sean, I've had EM for a little over two years and would be happy to share some dos and donts. I tend to focus on the positive so lets talk do's.
1) For starters, if you aren't aware, Dr. Cohen is a rockstar when it comes to EM advise and I would encourage you to check out his page of info on EM - http://www.jaycohenmd.com/erythromelalgia.html (also, these documents help educate family and friends who are trying to understand)
2) Medications & Supplements- keep at at, trail and error till you find some assistance
3) Compression Socks- These thing are outstanding when it comes to EM. Basically they are tight socks that promote circulation and minimize swelling. That said, I am able to go out at night because I know the EM socks will prevent major flare ups. I dont wear them 24/7 just during times I know I will likely get a flare up and will have to push through it. I purchase 30-40mmgh from Jobst - http://tinyurl.com/jvj8s65
4)Cooling techniques - elevation is good (90 degree angle for my feet) however to cool I typically keep my compression socks on and use frozen bags of corn. Also I have cold towels as previously mentioned. For showering, I stand in a lg plastic bucket with slightly cool water.