Hi,
I have extremely bad Erythromelalgia. It’s warming up here in Australia now, and of course the heat puts me in excruciating pain. I’m just wondering how you all deal with the heat when your feet are burning. 
Thank you kindly. Michelle
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Hi Michelle, I have neuropathy in my right foot, mostly. I have found that a TENS device , with electrodes placed in the most painful location helps a lot. You have to test various intensities and pulse rate, but you should get some relief.
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Hi,
EM is more severe , and they don’t work, but thanks anyway
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Hi Marie ,
I tried them all too and nothing worked for me either. It was really nice of you to email me. I can’t sleep cause of the burning feet. It’s almost 3am Monday morning here in Australia. Thank you though. I’m sure we can keep in contact if you would like too. I’m so sorry nothing has worked for you either. I really don’t know how I’m going to live the rest of my life like this . It’s not a life really.
Michelle.
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Hi Marie ,
Do you find that some foods trigger burning? I’m finding that.
Hugs ,
Michelle
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Ong, you are the sweetest and most lovely person ever. I have it in my face and hands too but my feet are exactly like yours. I knew about spicy foods. I’ve been trying different foods to see what triggers me. Bananas trigger me for some reason. My diet is bland too, I hear you girlfriend. Thank you for your kind words to me. I am more than happy to be your friend too. I wish I could hug you. I didn’t know all that info about the stomach and the actual name . It’s such a horrible disease. I suffer too everyday.
I feel for your friend. I have not heard of it being all through the body. Will that happen to us too?
How do I privately email you? I’m not good at that.
I’m 55 years old, but feel 80. My dad just passed away a month ago. I miss him terribly. I am alone. Been on my own for 16 years now. I have two daughters. My eldest daughter passed away 4 and half years ago. My youngest daughter ran away from home 7 years ago and hates me. I had my daughter who’s in heaven ( Jessica ), in icu, and I said terrible things to her. She got married 3 weeks ago, and didn’t invite me to her wedding. I’m so devastated. All I can do is pray for her to come home. Well. Back into my life. My mum lives about 45 minutes from me. I haven’t been able to drive for the past 2 and half years now. I miss driving so much. Everything you say is exactly me pretty much. I pray to Jesus asking him to heal me and to stop the burning and pain, but nothing happens. Why do we suffer so badly. I said something similar to my doctor, that if I had cancer, then they would help me with the pain, but they let us suffer. I just don’t understand why? It is really great to have someone to talk to. I’m here for you also Marie my friend. 
. We can support each other .
Love Michelle 
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Hey,
I’m worried about you. Please contact me.
Michelle you are not alone what you’re going through is absolute hell bring up alive and not having family to lean on. Please reach out to me. I’m sorry I’ve been warning the loss of my dog on Tuesday. Had to put her down after 17 years and I’ve been a mess since crying and I can’t stop crying. Please accept my apologies my dear friend. Please reach out to me on email. I’m here for you. Just because your family isn’t there doesn’t mean your friends can’t be there for you. Consider me your friend my heart breaks for you and your pain and you’re suffering and all your loss you’ve been through just know that you have friends that care I care even though I’ve been going through a lot. I can be there for you. It’s just been a really long week with very little sleep on top of my disease, losing my dog and trying to take care of my mom. You’ve had extreme loss Extreme trauma as am. I just know that you’re not alone. Hang in there my friend.
Hugs and LOVE 
to you Michelle
You’re a Survivor and you’re a warrior and I want you to hang in there because I know that there’s not a lot of people that respond. Sometimes there’s not a lot of people that are active on this site but there’s other sites that are active for people with chronic disease. best friends is awesome. It’s a great place to find people but a lot of people sometimes aren’t active for a while but just know that you can reach out to me on email. OK hang in there my friend sending you hugs and love.
Hi Michelle55,
I’ve had EM for over 25 years. About 8 years ago I was reading here about how Venlafaxine was helping some people. That’s the generic name for Effexor XR. I had been burning 24/7 with no relief. Especially, my feet although it affects my hands, face, head, and chest. So, since Venlafaxine is an antidepressant I thought it wouldn’t hurt to try it. I had a wonderful doctor who would do almost anything to help me. So he started me on a low dose and from there he would add more after a certain amount of time. Then I noticed my burning was doing better. So, I ended up at 225 mg and it took the burning away. The 24/7 stopped. And I have been on the same amount for 8 years. When I’m in my home you would never know I had EM. But, I don’t have carpeting either. I still can’t walk very much outside my home or they will start burning. And now in the winter I have to wear the little socks that go below my ankles or I will get blisters on my toes because they get too cold. The blisters are called Pernio. A dermatologist gave me an RX for an ointment to put just on the blisters and they go away. I live where it gets really cold in the winter but hot in the summer. For the last 8 years I have been the most comfortable I have ever been. I know it doesn’t work for everyone but I just thought I would tell you of my experience. I hope you can find relief.
Thank you so much. I’ll look into this. I’m in Australia. It’s coming up to our summer. I getting scared . I’ll show my doctor.
Michelle