Basically this started 5+ years ago. One day I put my foot in my sneaker and it felt like my sock at my big toe, there was nothing there. As time went on this weird numbness feeling spread to both feet, mostly in the toes, then the pain slowly crept in and the burning, this was over the course of 6 months or more. In the last 5 years I went to a foot doctor, neurologist, chiropractor, acupuncturist, numerologist etc, non had a clue. I found this erythromelalgia while doing research and it seems to be what I have. I will be seeing my doctor shortly to discuss it.
For the last 5 years I have been suffering great pain in my feet. Heres is the weird part, when I wake up in the morning my feet are cold to the touch and they dont hurt, as the day wears on they start to burn from the balls of my feet up to my toes, every day is different as to when the pain kicks in in the afternoon but every morning my feet are cool to the touch and dont hurt. My toes get red and swell up when its really bad. I put my feet in ice water to take some pain away, I also take tramodol because I thought it was some form of neuropathy. This is it for now, I have to run. Just trying to find a cure or something to deal with the pain, it really has a big effect on my lifestyle, I rarely wear shoes(morning time only) because it hurts to much, I wear sandals most of the time.
Hi jimm
This sounds oh so familiar, especially the waking up cool and out of pain only to have a gradual build up from mid afternoon onward into the night. I call them the witching hours, from about 3.30 pm until around 3.30 am. I have to sleep with no bedclothes or covers on my legs/feet but when I wake and find that 3.30 has passed I can pull up a sheet and thin blanket and sleep until morning. My feet used to swell with every flare but taking aspirin has reduced the swelling. If you feel you must put your feet in cold water please put them in a water tight plastic bag first. You will seriously damage the skin if you put hot swollen feet directly in cold water. Better to use a fan to cool them.
There is a wealth of information to find among discussions and blogs when you have time to look around and I hope you find some answers.
Nel
Hi Jimm, sorry to hear that you may be one of us with EM. The symptoms sure sound like it. There is a Dr. Jay S. Cohen, who had started having EM about 20 years ago. He wrote some articles about it that may help you understand what's going on. Most doctors either never heard about it or know very little. http//:medicationsense.com/articles/2012/emwhatis.html
Since I became aware of EM (one year ago) I have bought a lot of items to help keep my feet and hands cool - cool gel packs, bean bags etc. - most of it can be found on Amazon. There are also anti-itch lotions like Sarna or Eucerin to help and soothe the skin - I keep the lotions in the fridge to add to the cooling process.
Unfortunately everybody reacts different to medications like anti-depressants, aspirin or almost everything - so for most of us it's trial and error to find something that gives relief. I am not on any medications - the possible side effects scare me too much. If you are using Facebook, there are also some support groups you may want to join - like *Erythromelalgia - A helping hand* and others.
The pain can be off the chart, tonight is one of those nights. I took 5 tramadol and still feel the burn. I tried Nuerotin for a few weeks and it did nothing. I know they say not to put your feet in ice water but its the only thing that gives relief, I only put them in for 15-20 second at a time. I keep a bucket full of ice and water next to my bed because I sometimes wake up in the middle of the night and have to put them in for a few to get back to sleep, I also use a fan pointing at my feet at night and keep the A/C on low. Here is a pic of one of my feet, they both hurt and get red, sometimes the left one will get worse, tonight they are both equally bad. Now, I did go 2 days in a row where they weren't that bad, that is super rare and you start think did I eat something different? How come they didn't hurt nearly as bad as they usually do? I know one article mentioned Magnesium Citrate as something that may help.
Hi jimm This sounds oh so familiar, especially the waking up cool and out of pain only to have a gradual build up from mid afternoon onward into the night. I call them the witching hours, from about 3.30 pm until around 3.30 am. I have to sleep with no bedclothes or covers on my legs/feet but when I wake and find that 3.30 has passed I can pull up a sheet and thin blanket and sleep until morning. My feet used to swell with every flare but taking aspirin has reduced the swelling. If you feel you must put your feet in cold water please put them in a water tight plastic bag first. You will seriously damage the skin if you put hot swollen feet directly in cold water. Better to use a fan to cool them. There is a wealth of information to find among discussions and blogs when you have time to look around and I hope you find some answers. Nel
Tizzy, you are talking about *safe pain relief* - may I ask what that could possibly be? I assume you are not talking about long-term meds to reduce flares, but immediate pain relief. If doctors and nurses in the ER have no idea what EM is (and that's most likely the case) I wonder what they would dare to give somebody with the EM flare symptoms. Have you had any experience with that?
I tried all that stuff over the years, NSAID / aspirin had zero effect.. Ive been taking the tramadol less than a year, it takes the edge off but does not take the pain away totally, it will get me through going out somewhere in the afternoon/evening if need be. The good thing is it does not mess my head up, I dont even feel like Im on anything, I tried percocet a few times but I dont do well on those, you would have to take more than your head can handle to get pain relief and your like a zombie so those type of meds are no good., before the tramadol I tried a variety of things thinking I had a form of neuropathy or fibromyalgia, all sorts of vitamins/herbs etc. Like some of you I have kids, my youngets is 11 and its sux when you cant do things you want to do with them. Again, morning time is good for me, my feet are cool to the touch right now and look normal. Some days are better than others meaning some days I will get through a good part of the afternoon without any major issues. once or twice I actually made it into the evenings, its rare but it does happen. I wish I knew what the heck causes this, unlike neouropathy which causes nerve damage this seems like if its cured your feet will be back to normal unlike those with nerve damage. I just need something better than tramodol to live a more productive life until there is a cure.
Tizzy said:
Oooops - that looks pretty much like every picture on this site , thinking your self diagnosis is right. Thinking your self treatment is possibly not so right- 5 tramadol !! Please don't do this its really very dangerous, particularly seratonin syndrome, which can cause death. You are on the right track to diagnosis - great photo to take to doctor. read the discussions for some treatment suggestions to take to him , I started on 50g of Effexor and am now up to 225g with good relief. I also take 2x75g lyrica daily and high dose magnesium . It is hard to get used to these medications but the pain in my feet motivated me to persist. In the short term maybe you could try some lignocaine cream to numb your feet ,also have you tried elevating your feet above the level of your heart to bring down the flare. The reason for the Witching Hour as Nel puts it is that the bodies own cortisl levels are lowest at - you guessed it 3.00am . Cortisol is the bodies own natural cortisone and is vital in controlling pain and inflammation . You may find that a NSAID taken at bedtime or at the time of the flare may take the edge off better than Tramadol or as Nel suggests asprin . i am sure you will get some good help here - also beware of alcohol which makes flares viciously worse in most people. Be safe - try some of these ideas for a start.( go to an emergency room if you get too bad , they wont be able to help with the EM diagnosis but they can give you safe pain relief)
My husband was prescribed Palexia (Tapentadol one of the opioids) twice a day at the pain clinic here in Perth, Australia and he reports that his feet still hurt but the pain or the perception of pain is different and it is bearable. He will be having a Lignocaine infusion in May.
His EM is the other way he is better in the evening, after cooling his feet and massaging them in the way of lymphatic drainage. Every morning his feet are very swollen, red and very, very painful.
I think what Tizzy had in mind is that 5 Tramadol is not safe but I agree that emergency dep people would have no idea how to treat it and most would say: it is all in your head. I am amazed that Jimm is not affected by that dose, I would be throwing up like crazy.
Domina said:
Tizzy, you are talking about *safe pain relief* - may I ask what that could possibly be? I assume you are not talking about long-term meds to reduce flares, but immediate pain relief. If doctors and nurses in the ER have no idea what EM is (and that's most likely the case) I wonder what they would dare to give somebody with the EM flare symptoms. Have you had any experience with that?
The tramadol I take Is 50mg each.. I take 2 at a time, usually around 5pm and 8pm, for a total of 4. If ts really bad I will take one more before bed. I didnt start out this way, I took one twice a day, then 1.5 twice a day and so on. I try to keep it to 4 total but will use a 5th. Sometimes I wonder how much it actually works because the burning never goes away 100%. Here is a pic I took of my feet in cold water 10 minutes ago, no ice cubes yet, that comes later. You will notice my left foot and right foot are 2 different colors. All though both feet hurt, the left can really get crazy. The right foot will het red but right now its almost normal skin color. When people ask me what the pain is like, I tell them its the same as if you put your feet in scolding hot water, the pain is extreme and I have a good pain tolerance, not for this burning though.
I think what Tizzy had in mind is that 5 Tramadol is not safe but I agree that emergency dep people would have no idea how to treat it and most would say: it is all in your head. I am amazed that Jimm is not affected by that dose, I would be throwing up like crazy.
Domina said:
Tizzy, you are talking about *safe pain relief* - may I ask what that could possibly be? I assume you are not talking about long-term meds to reduce flares, but immediate pain relief. If doctors and nurses in the ER have no idea what EM is (and that's most likely the case) I wonder what they would dare to give somebody with the EM flare symptoms. Have you had any experience with that?
Thats odd, this cycle for me ie: feeling good in the mornings has been consistent for 5 years.
Besides the pain they are extremely sensitive to touch, if my daughter walks by when my feet are up on the recliner and her shirt happens to slightly brush up against my toes I jump through the roof. Its amazing how messed up this is...
Maggiebarb said:
My husband was prescribed Palexia (Tapentadol one of the opioids) twice a day at the pain clinic here in Perth, Australia and he reports that his feet still hurt but the pain or the perception of pain is different and it is bearable. He will be having a Lignocaine infusion in May.
His EM is the other way he is better in the evening, after cooling his feet and massaging them in the way of lymphatic drainage. Every morning his feet are very swollen, red and very, very painful.
Oh Jimm, do not soak your feet without a cover of plastic bag. Your skin will suffer. Soak them covered in double plastic bags. My husband puts frozen gel packs to cool the water further, If he is really bad he adds some ice cubes. I know that there is a theory that cooling only makes things worse and causes ulcers. I have been observing my husband's condition over the last 7 years and I do not agree that it causes ulcers. In my opinion small clots form under the skin when the attacks are really bad, than small necrotic tissue forms in that area, it starts to break down, bleed and forms an ulcer. All this is very painful in the local area apart from the pain of feet being on fire.
And you are correct, Tramadol does not make the pain go away it just masks the pain, it is still there just you perceive it differently. The two feet reacting differently is also a typical symptom to EM.
jimm said:
The tramadol I take Is 50mg each.. I take 2 at a time, usually around 5pm and 8pm, for a total of 4. If ts really bad I will take one more before bed. I didnt start out this way, I took one twice a day, then 1.5 twice a day and so on. I try to keep it to 4 total but will use a 5th. Sometimes I wonder how much it actually works because the burning never goes away 100%. Here is a pic I took of my feet in cold water 10 minutes ago, no ice cubes yet, that comes later. You will notice my left foot and right foot are 2 different colors. All though both feet hurt, the left can really get crazy. The right foot will het red but right now its almost normal skin color. When people ask me what the pain is like, I tell them its the same as if you put your feet in scolding hot water, the pain is extreme and I have a good pain tolerance, not for this burning though.
I think what Tizzy had in mind is that 5 Tramadol is not safe but I agree that emergency dep people would have no idea how to treat it and most would say: it is all in your head. I am amazed that Jimm is not affected by that dose, I would be throwing up like crazy.
Domina said:
Tizzy, you are talking about *safe pain relief* - may I ask what that could possibly be? I assume you are not talking about long-term meds to reduce flares, but immediate pain relief. If doctors and nurses in the ER have no idea what EM is (and that's most likely the case) I wonder what they would dare to give somebody with the EM flare symptoms. Have you had any experience with that?
Interesting to see your feet are two different colors. I have that also. Left foot is always worse than right. Although sometimes it is the other way around. I have the afternoon heating up also. My body gets hot and my feet get that tight feeling. Then into the night they flare. Sometimes the right in first to flare, but most of the time it starts in the left foot. I take gabapentin & propranolol, but they don't help much. Gabapentin helps me sleep and propranolol helps my blood pressure better than the other BP med I was on. I also take Aleve twice a day as recommended by my derma.
Since I had surgery for my broken leg, that foot flares almost continuously while the foot on the undamaged leg flares only from time to time. The rest of the time it is ice cold and pink except for the next to smallest toe which suffered a break a year ago and is usually grayish purple.
I have carers at the moment as I am non-weight-bearing and my feet are an endless source of fascination.
Nel
You have to be careful of the ice water as can get frostbite...I used to soak my socks in cold water and put them back on in order to keep working....the burning was so bad...that was in 95...only got diagnosed officially two years ago....I also found this disease online many years ago and assumed that was what I suffered from....my doctor is familiar with this disease so it makes it easier, although have not found a drug that helps yet.
What drugs have you takin that seem to have the best effect? Also, has your EM plateaued over the years? or gotten worse? Ive been dealing with this for over 5 years, the last few years seem to be the same, the last month it seem to go up a notch, I didnt think it could get any worse but it did, the left foot is taking a beating. It feels like my burning acid inside my toes and the upper 1/2 of my foot. I walk on my heel alot when my left foot flares up. The ball of my foot swells along with my toes , my right foot will still burn but doesnt swell much like the left. Right now Im stuck with tramadol.. This is like being tortured daily. As I type my daughter has a softball game and Im not going because of these damn feet acting up grrrr
One thing I wanted to do soon is experiment with different foods, I think certain foods/sugars may create these intense flareups.. As far as the ice water goes I only leave my feet in the water for 10-20 seconds at a time
I wonder if something causes EM?... The one thing I took A LOT of was Motron about a year and a half before this EM started. I had the worst pinch nerve in my neck ever, the pain was very bad and I could not get pain killers for long so I started taking loads of motron, way more that I should of and did so for months. I always wonder if this had a bad effect and caused this problem.
prlch said:
Interesting to see your feet are two different colors. I have that also. Left foot is always worse than right. Although sometimes it is the other way around. I have the afternoon heating up also. My body gets hot and my feet get that tight feeling. Then into the night they flare. Sometimes the right in first to flare, but most of the time it starts in the left foot. I take gabapentin & propranolol, but they don't help much. Gabapentin helps me sleep and propranolol helps my blood pressure better than the other BP med I was on. I also take Aleve twice a day as recommended by my derma.
