Hey Everyone - Just found this group as I am trying to figure out what my symptoms match up with and have had not so good luck so far with doctors being able to help (seems fairly common here). I extend my great sympathys to everyone who had this far worse that I do. The fact that I have never been too debilitated (other than difficulty walking for a couple days here and there) obviously means that whatever is affecting me isn't too bad at the moment.
Basically I have had excersize/heat related symptoms (primarily in the feet) for the last 10-15 years. Everyone always told me it was related to my extreamly high arches and not having correct foot support, so my memory of the exact situations that brought on symptoms is a bit shaded by that. Symptoms usualy followed running/excersizing and resulted in red painful spots (that turn white when pressed on) on my feet (10-60% foot coverage) that made it very difficult to walk and that would go away after a day or two. They definitly seemed to be worse every time I got new shoes/supports or started a new excersize program. I have also gotten red/hot/itchy/puffy hands during excersize (no real shoting pain or anything though - so not sure if it is related).
Things have been worse since moving to Hawaii 2 years ago (maybe becuase it is always warm :-) ). But I finally got to a doctor while symptoms were occuring (always difficult to get quick appointments while symptoms are present) and he definitly looked very perplexed and ordered a whole bunch of blood tests and x-rays (feet and chest?), and put me on some oral steroids. All the tests havn't come back yet, but so far nothing out of the normal (scheduling follow up soon). I havn't had any painfull re-occurances since I have been on the steroids, but definitly noticed heat and itching in feet and hands during excersize. The doctors concern definitly made me re-think what I had been told, and I have been doing a lot of searching to find out what is going on - hence why i ended up here :-)
Can anyone share some stories about how they were diagnoised (it seems the only reliable way is through symptoms)? How consistant/repeatable your symptoms are? And whether any redness you get is spoty or is constant in coverage (most pictures I have seen of Erythromelalgia are more full foot redness where as I am usually very distinct spots on feet. I tried to attached a couple pictures of some spots (these are at the end of an episode and so smaller and less red than initially). Fingers and upper palm are usually fully red, but don't really hurt). Thanks again everyone!
Your sympthom absolutely the same with me. the redness on my feet only cover 10% - 30% of my feet. Haizzz i really confused with this desease. Some doctor tell me that it is erythromelalgia but some doctor tell me that it is pressure ulticaria. the doctor that tell me that it is pressure ulticaria give me high dosage of anti histamin therapy. And it's work, now the sympthom is rarely occur and i can back to my hobbies like weight lifting, running, cycling.
If you want my feet's photo to make sure that it is the same sympthom, i can send you the picture, just email me at ■■■■■■■■■■■■■■■■■■■■
Coffee - Thanks for great info! Sure, i will contact you as I would love to get confirmation as to what this is. If the anti histamin is working for you that is great! Thanks.
Hi, I'm a newbie here too and have had 4 different diagnoses so far. Arthritis, neuropathy, fibromyalgia and erythromelalgia, possibly. I also have high arches and it started about 15 years ago, that I know of. The balls of my feet and my toes hurt so bad all I can do is moan and cry. The last time it flared up was about 2008 and it lasted about 18 months. Right about the time I went to a rheumatologist I had one visit with her and then I lost my job. I was depressed and stayed in bed for about a week and, all of a sudden my feet didn't bother me anymore. It comes on real fast, hits hard and then runs it's course, usually about 6 months, and then goes away just as fast. I get redness around my toes but not real red. The only thing that helps is scalding hot water, at least while I'm in the tub. But when my toes and feet start cooling off it's like every nerve in my foot is outside of my skin, exposed and aching even worse. I don't have insurance right now but as oon as I can I'm going to a doctor that can help me find out the problem and help me manage the painl. My gp did prescribe Lyrica for me because it worked once before. I've been doing a lot of cleaning up and rearranging around here all weekend and my feet hurt real bad but I can't' stop. The Lyrica does seem to take the edge off but that's about all.
Thanks again for sending me the pictures. My feet look almost identical to yours! I did some research on DPU (Delayed Pressure Ulticaria) and it really looks like that might be what I have. Especially due to the fact that it does tend to affect me in spots (usualy that are expiriencing some sort of pressure in my shoe), and the Coristeroid that the doctor had me try made them go away. Not sure I want to take an oral Coristeroid non-stop though if i can help it. I am going to talk to my doctor about clobetasol propionate (0.05%) topical. As it looks like there are some studies that show it helps as well. (http://www.ncbi.nlm.nih.gov/pubmed/7541190). The info i saw on it wasn't clear if it would help after symptoms started to show or wheather you needed to keep applying it. Anyway i will let you know if that helps at all. FYI all the blood tests came back negative for anything (consistent with DPU or Erythromelalgia).
coffee said:
Hey, hello.
Your sympthom absolutely the same with me. the redness on my feet only cover 10% - 30% of my feet. Haizzz i really confused with this desease. Some doctor tell me that it is erythromelalgia but some doctor tell me that it is pressure ulticaria. the doctor that tell me that it is pressure ulticaria give me high dosage of anti histamin therapy. And it's work, now the sympthom is rarely occur and i can back to my hobbies like weight lifting, running, cycling.
If you want my feet's photo to make sure that it is the same sympthom, i can send you the picture, just email me at andryciu@yahoo.co.id
I am just wondering. Do your hands get same symptoms? If its in both would assume its not from pressure. Seems we all have multiple things going on. Hard to tell what’s what. Along with erythomeglila. I also have foot pad atrophy that I think makes everything hurt more. Who thought the only place I would ever lose weight would be the bottoms of my feet. Go figure lol. Went to acupuncturist yesterday who is now saying I don’t have neuropathy due to autoimmune. Thinks its from back. Getting more confused. However oral steroids helped my erythomeglila.
I have never had the pain on my hands to my knowledge. They can get a bit red and itchy when i excersize, but no painfully spots like my feet. You are right thought that that would lean towards not a presure issue. The fact that gel inserts/arch supports do help (not 100%, but they do help) leans me towards the presure and not just heat causation though.
lambchop said:
I am just wondering. Do your hands get same symptoms? If its in both would assume its not from pressure. Seems we all have multiple things going on. Hard to tell what's what. Along with erythomeglila. I also have foot pad atrophy that I think makes everything hurt more. Who thought the only place I would ever lose weight would be the bottoms of my feet. Go figure lol. Went to acupuncturist yesterday who is now saying I don't have neuropathy due to autoimmune. Thinks its from back. Getting more confused. However oral steroids helped my erythomeglila.
Lambchop - just curious, have you had any side effects from the oral steroids? There are lots of warnings about taking them continually, but hard to tell if those are just the "legal" disclosures or how prevelant the issues are. Thanks.
lambchop said:
I am just wondering. Do your hands get same symptoms? If its in both would assume its not from pressure. Seems we all have multiple things going on. Hard to tell what's what. Along with erythomeglila. I also have foot pad atrophy that I think makes everything hurt more. Who thought the only place I would ever lose weight would be the bottoms of my feet. Go figure lol. Went to acupuncturist yesterday who is now saying I don't have neuropathy due to autoimmune. Thinks its from back. Getting more confused. However oral steroids helped my erythomeglila.
I tried to proof my symptoms, i carried a heavy back pack on my shoulder for 1 hours and then i got the same redness like my feet on my shoulder (i have the photo of this if you need). And sometimes after i worked out at the gym, i lifted some weight and then the redness will appear in my both hand (but i already delete my picture of this).
but after i got anti-histamin theraphy from my doctor, the spot of redness is getting smaller when it occur and the frequency of this symphtoms is getting rarely.
I hope you can understood my stories because my english grammar pretty bad hahahaha
theprincereturns said:
Thanks again for sending me the pictures. My feet look almost identical to yours! I did some research on DPU (Delayed Pressure Ulticaria) and it really looks like that might be what I have. Especially due to the fact that it does tend to affect me in spots (usualy that are expiriencing some sort of pressure in my shoe), and the Coristeroid that the doctor had me try made them go away. Not sure I want to take an oral Coristeroid non-stop though if i can help it. I am going to talk to my doctor about clobetasol propionate (0.05%) topical. As it looks like there are some studies that show it helps as well. (http://www.ncbi.nlm.nih.gov/pubmed/7541190). The info i saw on it wasn't clear if it would help after symptoms started to show or wheather you needed to keep applying it. Anyway i will let you know if that helps at all. FYI all the blood tests came back negative for anything (consistent with DPU or Erythromelalgia).
coffee said:
Hey, hello.
Your sympthom absolutely the same with me. the redness on my feet only cover 10% - 30% of my feet. Haizzz i really confused with this desease. Some doctor tell me that it is erythromelalgia but some doctor tell me that it is pressure ulticaria. the doctor that tell me that it is pressure ulticaria give me high dosage of anti histamin therapy. And it's work, now the sympthom is rarely occur and i can back to my hobbies like weight lifting, running, cycling.
If you want my feet's photo to make sure that it is the same sympthom, i can send you the picture, just email me at andryciu@yahoo.co.id
Sounds like you definitly have some back up on your symptoms. Glad the anti-histamin is working!
coffee said:
I tried to proof my symptoms, i carried a heavy back pack on my shoulder for 1 hours and then i got the same redness like my feet on my shoulder (i have the photo of this if you need). And sometimes after i worked out at the gym, i lifted some weight and then the redness will appear in my both hand (but i already delete my picture of this).
but after i got anti-histamin theraphy from my doctor, the spot of redness is getting smaller when it occur and the frequency of this symphtoms is getting rarely.
I hope you can understood my stories because my english grammar pretty bad hahahaha
theprincereturns said:
Thanks again for sending me the pictures. My feet look almost identical to yours! I did some research on DPU (Delayed Pressure Ulticaria) and it really looks like that might be what I have. Especially due to the fact that it does tend to affect me in spots (usualy that are expiriencing some sort of pressure in my shoe), and the Coristeroid that the doctor had me try made them go away. Not sure I want to take an oral Coristeroid non-stop though if i can help it. I am going to talk to my doctor about clobetasol propionate (0.05%) topical. As it looks like there are some studies that show it helps as well. (http://www.ncbi.nlm.nih.gov/pubmed/7541190). The info i saw on it wasn't clear if it would help after symptoms started to show or wheather you needed to keep applying it. Anyway i will let you know if that helps at all. FYI all the blood tests came back negative for anything (consistent with DPU or Erythromelalgia).
coffee said:
Hey, hello.
Your sympthom absolutely the same with me. the redness on my feet only cover 10% - 30% of my feet. Haizzz i really confused with this desease. Some doctor tell me that it is erythromelalgia but some doctor tell me that it is pressure ulticaria. the doctor that tell me that it is pressure ulticaria give me high dosage of anti histamin therapy. And it's work, now the sympthom is rarely occur and i can back to my hobbies like weight lifting, running, cycling.
If you want my feet's photo to make sure that it is the same sympthom, i can send you the picture, just email me at andryciu@yahoo.co.id
Sorry I didn’t see your question regarding the steroids sooner. My doc gave me 150 mg once per week for four weeks. Everyone thought it was a crazy high dose but I really trust my pain doc and he said it would be ok and it was. He said its a better way to dose and I could just stop it. I have a history of panic attacks (I’m a therapist now who specializes in anxiety) and I did have concerns about anxiety and mood issues. I actually felt much better on them, but you cannot stay on that dose long. Between that and the cymbalta and gabapentin the burning is better but not gone. Hope that answers ur question
Good luck.
