i was wondering if anyone has broken a bone or tore a tendon or ligament in a foot affected with em. Did it heal? how about other wounds on your feet? i love bicycling to make my em better, but now that i think about it, if i fell, im scared i would be screwed for a longgg time. i had a shoulder surgery last year and my em flared for 2 1/2 months and it was the worst time of my life. what are your guys experinces with this?
If I injure myself or get a wound it takes foreverrrr to heal. Ever since EM, I seem to get a lot of ‘soft tissue’ injuries? And it takes soooo long to heal. My newest thing is if I cut my foot it’s forming in to an ulcer?? Wierd… I also fractured my tailbone last year and to this day I still have problems with it.
My Wife has EM in both her hands and feet and 5 weeks ago she fell and broke her wrist.It needed a cast and she has been going through hell with the burning and swelling.The cast comes off next Wed. and hopfully everything will be ok.
OH MY GOD, the thought of having a cast..... omg, i dont know how i could handle that, thats scary!!!!
My muscles and joints are very vulnerable to strain, and the blisters I get on my feet during a bad flare take at least 6 weeks to heal. This is why I no longer wear closed toe shoes. I am much less likely to get blisters if I stick to sandals.
I agree that the thought of wearing a cast is unbearable!! I can barely tolerate a band-aid on my finger.
Ulcers (wounds) on my feet heal VERY slowly. I have two wounds on the bottom of my feet that are over year old. They are healing but very slow.
I didn't know that was the reason that I heal soo slowly. I have sores on my legs and feet and now arms that have been there for a year now. It started out with poison ivy and I can't get them healed.
yes, the ulcers are veryyyy troublesome, im just worried if i break a bone in my foot i would be literally screwed!!! im starting to take more precautions with how i live daily to prevent my chances of something bad happening like that....
mine was caused by being in a soft cast for to long, it cut off circulatin to the nerves and caused so much damage to them that it caused this, they thought i had crps at first by i surely do have erythromelalgia, not crps, and i got it verified by my doctor. i was in a cast for a torn ligament on th e bottom of my foot from gymnastics
I think everyone with EM who read this fainted at the thought of having a cast put on an area they get EM. I'd last five minutes into my first flare, then get a saw out...
Gary A Morris said:
My Wife has EM in both her hands and feet and 5 weeks ago she fell and broke her wrist.It needed a cast and she has been going through hell with the burning and swelling.The cast comes off next Wed. and hopfully everything will be ok.
It's awful that you have to suffer because of a mistake. I really hope that you can get over the shoulder surgery and get your EM under control, so that you can get back to the gymnastics.
I had surgery on the back of my knee which involved using a laser and left a burn. My EM went off the scale, I begged the doctors to put me back under anaesthetic until it healed. It did calm down, thankfully. I think most injuries and surgery have a similar effect. If you only have EM as a result of injury and not as a result of a disease, then surgery elsewhere in your body should heal fairly quickly.
There are a lot of physical and mental benefits of cycling so you have to weigh that against the risk of injury. As long as you aren't doing stunts or going down difficult montain slopes, and you take sensible precautions if you're on a road, the risk of injury is relatively low.
Will Prowse said:
mine was caused by being in a soft cast for to long, it cut off circulatin to the nerves and caused so much damage to them that it caused this, they thought i had crps at first by i surely do have erythromelalgia, not crps, and i got it verified by my doctor. i was in a cast for a torn ligament on th e bottom of my foot from gymnastics
I like your theory Lizzi. Have never heard anyone voice (or write) the why, although have read that many EM people blame an injury or an operation on their EM. I remember one person blaming a face lift. Can you imagine trying to look more beautiful and getting EM?
I did read about some Russian research on EM. I read this in a Russian newspaper by the use of Google translate. The research was accomplished after WW II. The study was on people that were wounded during the War. The summation of the study was that there was a substantial higher percentage of wounded people that had EM if they were wounded. That study tells you that you are right but not the why. Again I will say it. I like your theory.
No, I was not injured, but your sensitivity idea reminds me. Oh, I did not have diabetes or anything else. I was very healthy and traveled the world. I ate right, etc. But, I always was sensitive to the cold water in pools. AND the hot water in hot tubs and hot springs. And my feet were sensitive to walking barefoot outside. 3-4 years before I was contacted with EM I bought a vacation house on a lake about 35 miles from where I live. So the last few years before EM (BEM) I did quite a bit of walking barefoot on the sandy rocky beach. And walking in the cold Alaskan lake water. Maybe I can blame it on that? Maybe that was the trigger? OH, I am a guy, and that is another reason I should not have gotten EM. What is it….70% of people with EM are women. Thank you for your theory. Jim
lizzi said:
Here is my theory of how EM can be caused by injuries. An injury causes the release of numerous inflammatory chemicals. If there is ischemia (reduced blood flow) or hypoxia (lack of O2) in the area as well, the pH level is lowered. The resulting acid pH and the inflammatory chemicals all contribute to over-sensitizing the particular C-fiber receptors that perceive heat. These receptors go by the various names TRPV1, VR1, vanilloid, and capsaicin. When they are over-sensitized, the heat threshold is lowered so that temperatures are perceived as warmer than they really are. This then triggers the vasodilation and pain that is EM.
I believe this over-sensitization is the common link with all of us, regardless of the other contributing factors. For example, someone with diabetes might have reduced blood flow to the feet. This may lower the pH enough to cause TRPV1 over-sensitization. The same thing might occur with someone having extra inflammation due to an auto-immune disorder. I think every primary condition must be linked to secondary EM via one of the above factors. Even genetic EM must have some connection with the TRPV1 receptors, even if no one knows how yet.
This is just my theory, based on research by Dr. Layzer (see his paper "Hot feet: EM and related disorders") and the Mayo Clinic (see "Skin blood flow in adult human thermoregulation: how it works, when it does not, and why"), both articles in the TEA archives. I'd love to hear anyone's thoughts on this.
Will Prowse said:mine was caused by being in a soft cast for to long, it cut off circulatin to the nerves and caused so much damage to them that it caused this, they thought i had crps at first by i surely do have erythromelalgia, not crps, and i got it verified by my doctor. i was in a cast for a torn ligament on th e bottom of my foot from gymnastics
My feet are also very slow to heal like so many others with EM. When people comment on it when they see my feet I explain to them that similar to people with diabetes, my feet are healing compromised. I got some sores after gardening. I'm not sure if they were spider bites or started by some plant I was sensitive to but they were red & infected for about three to four months. Everyone was telling me to get antibiotics but I didn't. I made my own concoction of Oil of oregeno, tea tree oil, vit E oil & some neosporin which I put on it until they finally healed. Every time I get any kind of skin breaking injury on my feet I always get a scare that never goes away. Has anyone else noticed that too?
Your idea is really interesting lizzi. I'm going to look up those papers on TEA. I think I saw a paper on EM that discussed that EM could be caused by damaged blood vessels in the foot, so other blood vessels compensate by opening up, leading to EM,
There are probably many reasons behind EM. I think one of the problems is that erythronmelalgia is a description of the symptoms, so we all have different reasons as to why why we feel this pain. It has recently been discovered that what we call breast cancer is actually ten seperate diseases. EM is probably like that. There is the big division, which is already recognised, of primary and secondary EM. It is likely that as more genetic studies are done - and other research into nerve damage and resulting pain - that EM will have further division.
I find it interesting that my sister's very rare neurological condition (I think my family is cursed) was triggered by an injury, a torn muscle in her calf. In her case, her immune system is attacking the part of her brain that controls movement. It would appear that an injury can result in the immune system doing funny things, so it wouldn't be surprising if it also affected other areas of the body.
As you had that sensitivity to hot and cold water before you started walking barefoot in those Alaskan lakes, it's unlikely that they caused it. It sounds like you were always going to get EM, sadly.
A Norwegian study found that secondary EM was more common in men, a ratio of 3:2, so don't feel too bad!
Jim Weed Alaska said:
I like your theory Lizzi. Have never heard anyone voice (or write) the why, although have read that many EM people blame an injury or an operation on their EM. I remember one person blaming a face lift. Can you imagine trying to look more beautiful and getting EM?
I did read about some Russian research on EM. I read this in a Russian newspaper by the use of Google translate. The research was accomplished after WW II. The study was on people that were wounded during the War. The summation of the study was that there was a substantial higher percentage of wounded people that had EM if they were wounded. That study tells you that you are right but not the why. Again I will say it. I like your theory.
No, I was not injured, but your sensitivity idea reminds me. Oh, I did not have diabetes or anything else. I was very healthy and traveled the world. I ate right, etc. But, I always was sensitive to the cold water in pools. AND the hot water in hot tubs and hot springs. And my feet were sensitive to walking barefoot outside. 3-4 years before I was contacted with EM I bought a vacation house on a lake about 35 miles from where I live. So the last few years before EM (BEM) I did quite a bit of walking barefoot on the sandy rocky beach. And walking in the cold Alaskan lake water. Maybe I can blame it on that? Maybe that was the trigger? OH, I am a guy, and that is another reason I should not have gotten EM. What is it….70% of people with EM are women. Thank you for your theory. Jim
Lizzi, what I was trying to say is that what we now call EM, is probably several different diseases, not just that there are several different causes. Therefore there may be no common link. My specialist, Prof JJ Belch, compared it to diabetes. There are two forms, type-I and type-II. While they have a similar effect, they are two different diseases, with different causes and which present at different ages. The same goes for primary and secondary erythromelalgia. In fact, Prof Belch was one of the experts who recommended changing the name of primary erythromelalgia to erythermalgia, as the two forms are quite different.
Your idea about the cause of some cases of EM could be right, in cases where EM occurs as a result of injury. However, I don't think there will ever be a common cause of EM, due to the different diseases we probably have. It is possible that treaments will overlap, just as they do now, as many drugs work in several different ways, and because there may be some similarity in the disease effects. I will be asking Prof Belch about the TPRV-1 theory, I'll let you know what she says.
If you've been corresponding with Dr Julius about this, you should ask him to make you a co-author on future papers. If he doesn't, you should write your own paper. I'll read those papers as soon as I can, but the terrible flare I'm in at the moment means that concentration is a little difficult.
Shoulder fracture causing EM flare in feet?
I’ll try posting this here because the discussion seems related. My symptoms were quite manageable for at least eight months. I was even walking several miles a day without problems. Then I tripped on a hole in the pavement and wound up with a badly fractured shoulder. Three days later, my feet started swelling up, turning red, and burning. That was a week ago, and it’s still happening. I’m not diabetic, but my EM originally started with swelling and burning in the feet and legs. So I’m guessing that the inflammation and bad circulation in the shoulder may be triggering the EM in the lower extremities. Any thoughts?
Hey Lynn,
I get the feeling we have spoken before my friend ;). This is not the first time I have heard of an injury or surgery leading to EM. Aside familial genetic ,EM may manifest randomly for unknown reasons (sporadically) or the condition may occur secondary to various underlying disorders, particularly myeloproliferative disorders, neuropathies, or certain autoimmune and connective tissue diseases. Evidence also suggests that erythromelalgia may also occur as an adverse effect secondary to certain drugs (e.g., bromocriptine, nifedipine, nicardipine) and specific antibiotics.
You are right about abnormalities in the normal narrowing (vasoconstriction) and widening (vasodilation) of the diameter (caliber) of certain blood vessels leading to abnormalities in blood flow to the extremities.I agree that it would make sense to assume some damage in shoulder may have caused this. Must say, however, that rather infrequent that EM develops following an injury or surgical procedure(although as I say i know several people who have). Im so sorry if thats the case- thats really horrible luck.
Hmmmm,probably asking silly questions but could it be that you have a secondary EM to another underlying disorder or that this is medication induced? I know you have PN but did you already have peripheral neuropathy? I know you have been diagnosed but EM does rather mimic other illnesses such as Complex Regional Pain Syndrome/RSD. Differential diagnoses is a massive problem. Was diagnosis clinical presentation and small fibre neuropathy tests?
A hypothesis of why some of us develop primary sporadic is stress. Im convinced that stress triggers some yet to be discovered gene variant in sporadic EM'ers and that this messes up our voltage-gated sodium channels akin to familial genetic( ie: gain-of-function Na(v)1.7 mutations) . If you have primary sporadic with acute onset you might find that sodium channel blockers like lidocaine gel compounds or patches really help.Quite a few sufferers find that they do.
Remember you told me you take gaba and amytriptiline which is great news as they are firstline EM treatments.
Im going to look through my library for you to see what i have on this topic. Might be good idea to post it as a new discussion , then we can share it out to all members and ensure you get a good response.
Sorry cant be more helpful at this stage. Promise ill get back to you
Wishing you a 'comfortable' night, lynne
God bless
mads x