Do you really believe that? This disease is so rare that only 1 in 200,000 have it in the U.S. Or, do you believe that there are much more cases of it, just undiagnosed?
Me .... I say there are more than 1 in 200,000 cases and the majority are undiagnosed.
Joanne
i think its a bigger number lol! I have never meet or heard of anyone beside me ever having erythromelalgia
or maybe we just have the severe symptoms and theres other people with just "hot feet" but not like how bad ours are
No! I don't beleive that for a second, I believe that there are much more cases of it, just undiagnosed... There are 5 of us alone here in North Florida alone 4 diagnosed 1 not as of yet, But am sure she will be.. We all just met last Sunday for our 1st EM Support group Lunceon...
What do you think the odds are of 5 people meeting in the same area of your State that have EM? One would have you think slim to none, But here we are as proof...
Judging from my dermatologist’s reaction to the diagnosis of EM provided to me by my neurologist, I would say that it is going to remain a ‘rare’ illness indeed just because it is undiagnosed due to lack of knowledge. However I don’t know if this applies to inherited EM alone which must be much rarer.
Well after taking 3 years,and losing count of doctors I had to see,you no there are so many more out there,I find I’m the one giving doctors info
I have had this for so many years to a milder degree than many on this website. However gor the last ten years I have had “bouts” of neuropathy pains. Rhemo said undifferentiated connective tissue disease. Multiple top neuros from manhattan, long island hospitals etc said I did not have neuropathy but was stemming from back problems. I kept showing them my hands and feet and they were thoroughly unimpressed. Seems now my neuropathy is probably small fiber which two years ago can back negative. My antiphosidlipid syndrome and erythromeglia are all typical of connective tissue disease Does anybody suffer from neuropathy hands feet and legs? Thinking about trying the ReBuilder for neuropathy but it is very expensive. Currently on cymbalta gabapentin and 150 mg prednisone one time week for four weeks. Has to be some sort of special dock or cooling gel insole we can invent. Usually extremely active Zumba walking gym now not doing anything. Any feedback on the small fiber neuropathy would be appreciated.
Meant some sort of sock. Any inventors out there? I bet if we posted more on lupus websites, or neuropathy websites we would find a lot more hot tootsies out there.
I found a pair of slippers in Fla, that had micro beads inside that cooled when left in freezer. [I think they coud be warmed to, but not sure how. ]
I've put my orthotics in freezer and it helps for a few minutes. Spray a little water on some socks and put in freezer for 1/2 hour. Only problem is they heat up quickly!
As for number of EM people, I'm sure there are more. But my podiatrist, who has been practicing for 35 years and has one of biggest practices in Toronto, has NEVER had anyone with hot feet.
So not sure how much more common it is!
lambchop said:
Meant some sort of sock. Any inventors out there? I bet if we posted more on lupus websites, or neuropathy websites we would find a lot more hot tootsies out there.
Lambchop, I have small fiber neuropathy, diagnosed this January. I knew something new was wrong when I could no longer feel a fan blowing on my feet when they were burning. The neuro told me it would never get better, but it did. What helped most was 2 things: Metanx taken for 4 months; high arch Birkenstock sandals with the leather upper and cork footbed. It made a huge difference, over time. I now take more normal doses of the B vitamins that are in Metanx and I still wear Birks to prevent future trouble.
After my samples of Metanx ran out I listed the exact ingredients and went to the Vitamin Shoppe and got OTC versions. I tried numerous shoes and gel insoles, etc., but nothing worked as well as the Birks. I'll only wear Birks now and NOT the ones with synthetic uppers and footbeds.
Regarding the rareness of EM, I suspect there are many undiagnosed people out there considering how many docs I've seen over the past 19 years who had no clue what was wrong with my feet and had never heard of EM. I also think it's possible to have a milder case of it, based on others in my family who are like that. But I do think EM is pretty rare since those docs often made comments like, "I've never seen anything like that" and "That's definitely not normal" with a puzzled look on their faces. These weren't young, new docs either. They'd seen many patients in their careers, but none with feet like mine.
I have to believe that there are many more out there that simply don't know what is wrong with their feet & haven't been fortunate enough to find a doctor who is aware of the issue. It gets expensive to try and get help when the doctors aren't knowledgeable on the subject. For myself, I can't honestly say if this is what I have or not because while most of the symptoms match, they never reach the extremes I've seen for many of you. While mine have progressed slightly throughout the years since high school (burning feet when hot or when standing for any period of time, darker red/slight bruising spots along the sides and heels of my feet), it just doesn't hit the extremes I've seen here. This year, however, I my worst flare up & it took me a few days to realize that my left foot was swollen as well, which was why it hurt more than they normally do, but I keep hoping that it wont progress any more than it has.
So, I have to wonder how many more like me might have either a milder version of this condition, or simply haven't progressed into the absolute worst of it yet. Obviously, I'm hoping I'm wrong about having it, but so far it's the only thing I've come across that fits all the symptoms of my feet and I've been searching for awhile because they feel like this daily. & even with a lot of internet searching, it took me a few years to stumble upon a site that addressed this condition. That was a few years ago, and I was thrilled to finally see something that matched my symptoms. I figure even if I'm wrong, I can still watch the posts eagerly & see if any of the remedies that work for others work for me, or if things get worse, have a good idea of what course to request when finally taking this to a doctor.
Really though, there must be many more out there. When something is this "rare" there are almost always many, many people who know something is wrong but don't have the means or help to figure out what it is.
I'm sure there are degrees of EM just like with anything else. My symptoms are more like yours, not the extremes I read here, but what you describe. I saw a Dr. here in Toronto who treats EM and he said I definitely have it. I'm lucky that 10 mg Amitryptaline/day makes a huge difference. I've had it like this for about 10 years, so maybe some progress and some don't. I pray I stay like this!!
I haven't had swelling very often....only if it's EXTREMELY HOT, but I do my best to avoid situations like that. The odd time I can't help it, I get swelling too. YOu definitely sound like you have EM and don't need expensive tests to prove it. There's little to do with the information anyway.......
violet976 said:
I have to believe that there are many more out there that simply don't know what is wrong with their feet & haven't been fortunate enough to find a doctor who is aware of the issue. It gets expensive to try and get help when the doctors aren't knowledgeable on the subject. For myself, I can't honestly say if this is what I have or not because while most of the symptoms match, they never reach the extremes I've seen for many of you. While mine have progressed slightly throughout the years since high school (burning feet when hot or when standing for any period of time, darker red/slight bruising spots along the sides and heels of my feet), it just doesn't hit the extremes I've seen here. This year, however, I my worst flare up & it took me a few days to realize that my left foot was swollen as well, which was why it hurt more than they normally do, but I keep hoping that it wont progress any more than it has.
So, I have to wonder how many more like me might have either a milder version of this condition, or simply haven't progressed into the absolute worst of it yet. Obviously, I'm hoping I'm wrong about having it, but so far it's the only thing I've come across that fits all the symptoms of my feet and I've been searching for awhile because they feel like this daily. & even with a lot of internet searching, it took me a few years to stumble upon a site that addressed this condition. That was a few years ago, and I was thrilled to finally see something that matched my symptoms. I figure even if I'm wrong, I can still watch the posts eagerly & see if any of the remedies that work for others work for me, or if things get worse, have a good idea of what course to request when finally taking this to a doctor.
Really though, there must be many more out there. When something is this "rare" there are almost always many, many people who know something is wrong but don't have the means or help to figure out what it is.
Thanks for the info on metenex my foot doctor gave me some samples. I’ve been taking that as well as alpha lipoic acid. Did the small fiber spread to ur hands? I can’t feel hot or cold on my fingertips. Freaking me out. I may try the ReBuilder. I’ll let u know how I make out. Thanks for ur input
I believe, also, that there are many undiagnosed with EM. However, for people who have EM, even though they don't know what it is, surely they are seeing doctors who are seeing it. Why aren't these doctors asking "what this is?"
I like many others, have seen many doctors. I was 'diagnosed' 4-5 years ago, but I am still looking for a doctor to help me navigate this terrible condition. The last one I saw this week, a dermatologist, said he had one woman that he had tried to help with EM, but was unable to help her. And, he said she was the only one he had seen in his 23 years of his dermatology practice -- I was his second patient with EM.
So, I do believe it is rare, unfortunately, but one in how many is probably anyone's guess. I just wish I could be as 'lucky' with the lottery!!
I think there may be more people undiagnosed, but it does seem rare. So little is known about it & very few doctors know how to treat it, or have heard of it for that matter! Looking back, I had mild symptoms off & on for years but didn’t even seek treatment because it was so infrequent & mild. Unfortunately, that is not the case for me now. It has become debilitating this past year. I hope more research is done to find better treatment or a cure.
I have seen studies that range from 1 in 40,000 to .25 in 100,00 (1 in 400,000). I think the huge advancement of the Internet has helped us tremendously in self diagnosing and finding others to contact that may have a similar diagnosis. Based on my experience with physicians and being in healthcare for 30 year , seeing the bewildered looks on the faces of physician’s with over 40 years of experience . Finding only 1 physician in Lexington who saw it on 3 or 4 patients 15 years ago at the mayo clinic… it is obviously an extremely rare disorder. But the array of symptoms and secondary versus primary causes a huge variation in how the disorder presents itself! I am not sure how you are classifying northern Florida if you include cities such as Orlando ,Tampa, Saint Petersburg ,Jacksonville, Daytona etc… if the entire state has a population of 20,000,000… there are about 100 people in the state of Florida give or take …so I do believe with today’s tools…you could all cross paths. That is so fantastic to start a support group. The 1 physician I know that’s so it 20 years before said it was so rare it is an orphan disorder. So maybe 1/ 100,000?
what a great post!
I have just returned from my GP who is semi-retired and has been away for a month. I told him of the diagnosis of EM and he said “Never heard of it”. I explained the symptoms and he said “Well I’ve never heard of erythromelalgia but I have certainly come across those symptoms”! I don’t know if he referred patients with the symptoms on or did they just go home and hide in a cool corner and never know why they suffered. Without the Internet and a stubborn nature I might have done just that too. I took a sheet of information about EM with me so he will know for next time.
No, the ongoing numbness didn't spread to my hands, although I've had spells of numbness, tingling and have EM episodes in my hands so there could be some small fiber PN there. In fact my EM began in my hands in 1993, a couple of years before it started in my feet. I've never tried ReBuilder. An electro-accupuncture treatment did help my hands years ago though.
Thanks for the info. This is truly such a weird constellation of symptoms. Hope we all find something that works for us. Hang in.