hey, my EM doesn't burn after being exposed to heat althought my legs burn when i walk sometimes... does EM always occur with a burning sensation or is that the main symptom most people discover?
My EM started with pins and needles then numbness. The burning didn't start straight away.!
may i ask how old you are and how long you have had EM?
lauraflora1 said:
My EM started with pins and needles then numbness. The burning didn't start straight away.!
I am 38, was extrememly fit and active beofre I got EM about 5/6 yrs ago.! I still cycle but any other exercise is out of the question.!
oh okay, just wondering... I'm currently 16 and fears of having it progressing.
I've gone through many phases, some where it has been unbearable constantly affecting my sleep as well as all day and others phases where I've had 18 months pain free... I am currently flaring daily but it has been manageable with putting feet up, avoiding alcohol, spicy foods and using fan to keep cool. I also wear sandals most of the time.
i currently only flare when im warm like after a shower or working out.
do you ever get phases when its cold to get purple hands?
Yes I sometimes flare more in the colder weather because of going in and out of different temperatures. My feet and hands go bright red or purple from the cold, I experience pain then go into an em flare as soon as I start warming up even slightly. I have secondary em but not sure what its secondary to.
i hardly know anything about this illness been looking on the internet for 3 years not realising how rare it is... feeling relieved that i have now people to talk to although i'm probably the youngest one on this site with the condition though not sure.
There is a young girl called Lauren on here and young man called Will too and I know several people had EM from a young age. There is a couple of parents of children and teenagers too. It is a great place to come for support, understanding and information. You are never alone on here.!
Hi Jed,
My 7 year old daughter has EM, she has Vulva Erythromelalgia, sometimes its just the burning other times its burning, severe pain, swelling and redness, she has EDS Type 3 and CRPS also. If you want to know anything yell out, we are all here to help each other:):)
Jed said:
i hardly know anything about this illness been looking on the internet for 3 years not realising how rare it is... feeling relieved that i have now people to talk to although i'm probably the youngest one on this site with the condition though not sure.
oh, okay jacqui thank you, have you any idea how long you think she has had EM for?
and laura thank you for the additonal info.
Hi Jed, my 17 year old daughter has EM - or so we believe. She found this website after the doctors couldn't find anything wrong with her time after time (3+ years). She first had pain in her feet - left one, right one, both. We thought it was plantar fasciitis. She could barely walk and her feet were constantly swollen. It was a couple of years before the redness appeared and then the burning. She is always in pain. The more she walks, the more the pain. The hotter the weather, the more pain. This site is good bc there are lots of sufferers out there - and for her it helps to know that she's not alone. And you are not alone. Hang in there - you are strong and a fighter and with help, you can figure out how to control EM!
Thank you i really appreciate that, even in normal temperature i put my hands in my pocket for 10-20 seconds and they're already bright red, its seriously embarassing and im terribly self conscious about my looks.
Mooooms said:
Hi Jed, my 17 year old daughter has EM - or so we believe. She found this website after the doctors couldn't find anything wrong with her time after time (3+ years). She first had pain in her feet - left one, right one, both. We thought it was plantar fasciitis. She could barely walk and her feet were constantly swollen. It was a couple of years before the redness appeared and then the burning. She is always in pain. The more she walks, the more the pain. The hotter the weather, the more pain. This site is good bc there are lots of sufferers out there - and for her it helps to know that she's not alone. And you are not alone. Hang in there - you are strong and a fighter and with help, you can figure out how to control EM!
Hi Jed, the doctors think she may have been born with EM, we are back to hospital in 2 days for another surgery and to see more doctors.
Jed said:
oh, okay jacqui thank you, have you any idea how long you think she has had EM for?
and laura thank you for the additonal info.