I was wondering what everyone's description of pain is when they have an EM flare up? My EM has progressed and the tingling pain I have been feeling has started to include stinging burning painful feelings as well. I also tend to ache pretty bad sometimes after I have a flare up. My arms now swell up often during the day with the stinging burning tingling pain. I swell and turn beet red from just below my shoulders to my finger tips and my hands and fingers are the worst. My hands get numb often enough that I choose not to drive sometimes. Does anyone else experience anything like this? Also my legs swell from below my knees to my toes and feet with redness. my feet and toes swell but not as bad as the hands. Thanks alot and God Bless. I hope all of you know how much your posts and discussions have helped me incredibly.
I only have tingling for a millisecond before severe burning pain hits, like gasoline has been poured on the feet and a match lit to them. That's if I'm not on Magnesium and having a bad flare. Now, the progression is a bit slower so I have time to get to a cooler environment or use other methods to try to prevent it from getting to the "gasoline-fire" level of pain. They do turn blood red and swell when flaring.
I'm only recently (a year or so) had a different type of stinging with the flares. I suspected something different was going on, and was having other pain problems in feet too that were new as far as the severity of them. Saw my PCP, then my neurologist and a podiatrist about the changes. The new stuff was diagnosed as Plantar Faciitis (sp?), bilateral peroneal neuropathy and small fiber peripheral neuropathy. I think the PF was caused by years of going barefoot whenever possible and the SFPN is very common in people with EM. I'm not sure whether the peroneal neuropathy wasn't always there but milder since I've always had foot drop and tended to walk on outer edges of my feet (supination).
I think you should report these changes to your doctor. Don't just assume that there's nothing they can do. I have received help with my new problems and feel much better than I did a few months ago, although the EM is definitely still with me.
If you got a nasty sunburn on your back and someone came up and slapped your back with their open palm about 10 times in a row....that's how the soles of my feet feel when they are flaring.
If you ever went barefoot as a kid and had to walk across a wide street in the blistering summer heat, and after the first few steps you realized how hot it was on your feet but you couldn't turn back because some cars were coming...that's how it feels. But you never reach the other side of the street!
Hi. I'm new to this condition. It started a little over a year ago with just my toes turning red and getting very warm. It then spread to my hands and eventually to my scalp and face as well. Up until about a month ago, it was just very warm and no pain.
Then my skin started getting very sensitive. Things that were really just warm felt very hot to the touch for me. Running my fingers through my hair felt like I was scraping my fingernails across a sunburn. Sometimes it feels like my hands and feet are raw, chapped, and cracking and everything that touches them aggravates the feeling.
My EM is complicated because I also have Raynaud's Disease. Both of these have been diagnosed as primary (for now). The Raynaud's is almost completely opposite... I'm always cold and my fingers/toes go numb from it. I have to balance between trying to keep warm and suddenly finding myself too hot and flaring EM. This winter here in Texas has not helped. We've gone back and forth each week from 40 degree weather to 70 degree and then back since November.
The EM has been a slow progression that I fully expect to continue. The RD came on suddenly three months ago. Soon it will be warm again where I live (Houston) so I am a bit concerned about what is coming with the EM.
I'm interested to see what others experience with EM so I know what to expect.
Sounds like you're having the same kind of winter we've been having here in Virginia (originally from KY). It's really tough on my EM because my feet adjust to weather to some degree but with so much fluctuation in temperature they can't stabilize and they trigger very easily. I'm worried about this coming summer too. Overall, this winter has been much warmer than usual and I can't stand the thought of an even hotter summer than last year.
My EM progression was similar to yours. Started in my hands for the first few years, then feet started too. Now also the ears on occaision. I've had it for about 19 years. Magnesium supplements help my hands tremendously, so that's no longer the huge problem it once was. Knuckles still turn red and sting a little, but I can live with that. Unfortunately, my EM in the feet is still very bad. I'm still working on learning what triggers it, realizing some triggers are subtle. Also still experimenting with treatments and helpful products and searching for the underlying cause since I suspect mine is secondary to an undiagnosed systemic condition. I'm also diagnosed with Raynaud's, Fibromyalgia, IBS, Osteoarthritis and Glaucoma among other things. There is a very narrow temperature window where my EM or Raynaud's isn't triggered. It's difficult to juggle for sure.
I also have with the EM, Fibromyalgia, Arthritis of some kind (don't know yet), Celiac, and Raynauds. I have just started Magnesium treatments and hope things get better. I have noticed that alot of EM sufferers also have Raynauds and Fibro. I often wonder if there may be a connection between them all and maybe other ailments as well. The weather has been a horrible trigger for me for EM and Fibro. It has gotten so bad, I applied for SSD. I also think that when I do not follow my celiac diet it may trigger or make flares worse as well.
Kentuckian said:
Sounds like you're having the same kind of winter we've been having here in Virginia (originally from KY). It's really tough on my EM because my feet adjust to weather to some degree but with so much fluctuation in temperature they can't stabilize and they trigger very easily. I'm worried about this coming summer too. Overall, this winter has been much warmer than usual and I can't stand the thought of an even hotter summer than last year.
My EM progression was similar to yours. Started in my hands for the first few years, then feet started too. Now also the ears on occaision. I've had it for about 19 years. Magnesium supplements help my hands tremendously, so that's no longer the huge problem it once was. Knuckles still turn red and sting a little, but I can live with that. Unfortunately, my EM in the feet is still very bad. I'm still working on learning what triggers it, realizing some triggers are subtle. Also still experimenting with treatments and helpful products and searching for the underlying cause since I suspect mine is secondary to an undiagnosed systemic condition. I'm also diagnosed with Raynaud's, Fibromyalgia, IBS, Osteoarthritis and Glaucoma among other things. There is a very narrow temperature window where my EM or Raynaud's isn't triggered. It's difficult to juggle for sure.
Fortunately, the docs checked me for celiac and said I don't have it. My GI issues are odd. The safest things for me to eat are complex carbs or grains. My body does not like most fruits and veggies which trigger the IbS, and my EM gets triggered sometimes by some fruits.
GI tests showed all my "valves" throughout the GI track are "incompetant". They stretch too much so don't function properly. I have a suspicion that the same kind of thing in blood vessels may be part of what causes my EM. If the vessels stretch too much, too much blood ends up in the feet maybe. I'm to be evaluated to see if it's caused by a Heritable Disorder of Connective Tissue such as Ehlers-Danlos or something similar.
Some of those with the combination of EM, FM, Arthritis and GI issues end up diagnosed with an autoimmune disease, but I've been tested for those for so many years that it's unlikely my underlying disorder is autoimmune.
I hope all goes well with your SSD application. Be ready to appeal if necessary (and it usually is).
cgerula said:
Hello Kentuckian,
I also have with the EM, Fibromyalgia, Arthritis of some kind (don't know yet), Celiac, and Raynauds. I have just started Magnesium treatments and hope things get better. I have noticed that alot of EM sufferers also have Raynauds and Fibro. I often wonder if there may be a connection between them all and maybe other ailments as well. The weather has been a horrible trigger for me for EM and Fibro. It has gotten so bad, I applied for SSD. I also think that when I do not follow my celiac diet it may trigger or make flares worse as well.
Here's a funny one, my feet turn purple not red. And not kinda purple, it's "OMG Barry, your feet are purple" purple. the stinging has subsided and is at a lower level when it comes. The burning is pretty text book I guess. But sometimes when the feet swell bad during a flair, it feels like I'm walking on bruises. I cried when I got my wheelchair but I would go someplace and get stranded cause I couldn't walk, and no way to predict how long I needed. I do way more now. EM is my constant companion and the chair is my safety net.
Sounds like me, my veins will first start to swell in my arms or feet and then suddenly my skin becomes flushed and bright red. Then very swollen and very tingly. The pooling and swelling causes the horrible pain for me. Sometimes I have no pain though. At night my thumbs tingle. No pain. Just red tingling.
If i have an intense, severe flare my feet are beet red & very hot with burning pain. If it is a mild one it is only stinging, pins & needles. My feet get swollen and it is mostly the tops of my feet that feel the worst. It usually starts with one foot and then the other. Sometimes my knees get red & painful before having a bad flare in my feet. It's like a warning of what's ahead for me. I am sensitive to gluten (but wasn't diagnosed with ciliacs) so I do better without it. I have much less flares when I stay strictly on a gluten-free vegan diet. I am reading a good book right now to keep me motivated. It's "The Gerson Therapy". It is the Proven Nutritional Program For Cancer & Other Illnesses. Ever heard of it? I want to WIPE OUT my EM!
I have progressed to stinging and burning also, not constant, definitely when it's at its peak, it correlates pretty well with how long my legs have been down as well as amount of redness. I also have Raynaud's, weird to have hot and cold extremities simultaneously.
Walking on bruises was exactly my description to my hubby when my feet get so swollen during a flare up. Can't put my foot down and if I do I don't want to lift it again because the pain is even worse as the blood flows back in.
My feet are purple at times too but that's when they are cold. Right now left foot on fire and swollen, right foot purple and cold and toes on both look like chipolata sausages.
Barry C said:
Here's a funny one, my feet turn purple not red. And not kinda purple, it's "OMG Barry, your feet are purple" purple. the stinging has subsided and is at a lower level when it comes. The burning is pretty text book I guess. But sometimes when the feet swell bad during a flair, it feels like I'm walking on bruises. I cried when I got my wheelchair but I would go someplace and get stranded cause I couldn't walk, and no way to predict how long I needed. I do way more now. EM is my constant companion and the chair is my safety net.
I liken the tingling to how it feels when you have touched stinging nettles except it is much worse and doesn't fade away and the burning heat, redness and swelling just add to the misery. As Barry C said it is like walking on bruises when feet swell up.
I am fortunate in that it is only my feet that are affected so far but it has progressed from halfway up my feet a few months ago to past my ankles today.
Since I posted in February, I'm experiencing new things. The weather has started to warm up here in Houston and I have been flaring at night. My hands, feet, and ears get very hot... but more importantly, they get extremely sensitive to touch. I feel like they are extremely chapped and everything that touches them (sheets, blankets, pillow) is scraping across a sunburn. (Makes it hard to sleep and I've been pretty tired because of it.)
When my feet are flaring I am in such excruciating pain I don't feel like moving untill it subsides. I can sometimes hardly even walk to the freezer to get cold packs. Luckily mine only last between 10 to 30 minutes. My feet get very bright red, swollen and I start looking for everything that constricts blood vessels like which hazel.
Gosh, it's so hard to explain the feeling to people who haven't experienced it, but people here might "get it".
My feet permanently have that feeling like when you first discover you have pins and needles. That feeling when you put your foot to the floor and it feels like you have sensitive springs under the skin which send shock waves up your leg. This is how they are 24/7. Added to that (as if that wasn't enough) they get so hot when laying in bed. The hot feeling gradually builds to an excruciating burning sensation. I live in almost constant fear of someone treading on my toes, or even touching them. When I am sitting in my recliner watching TV and my wife walks past I quickly retract my feet just in case she may accidentally brush against them.
I know how you feel Ken. we have dogs that trample over my feet if I'm not careful. Also I have to take little shoes off one & two year olds so they don't step on my toes. When I see the dogs coming I put my feet up & guard them.
Do you keep your feet elevated when you lay in bed & uncovered?