erythromelalgia EM excessive body heat from legs etc

Posted , 4 users are following.

..........to legs hands etc, article by Jay S Cohen seems to explain

my condition of feeling as though your legs are next to a hot

radiator, giving off excessive heat, which is quickly responsive

to cooling, so little info on the subject,

leg cramps is not the problem just the nearest subject on this 

forum to EM

comments please

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7 Replies

  • Posted

    Hi mike76241. You are going to struggle to find much about this condition! I too searched for a forum and only found this one which is about cramps. Maybe we need to start a new discussion, which I might well do later, I am a bit busy at the moment though on my computer with other things. I suspect that I have it shortened as EM. There is an association called The Erythromoelalgia Association website address is: http://www.erythromelalgia.org/WhatisEM/Diagnosis.aspx so it might be worth a look on there as there is a lot of information on the condition. I have joined I can't remember how much it was per year, but it wasn't expensive and you don't have to join I don't think to see what people are saying.
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    • Posted

      HI there - I believe that I also have EM, although not firmly diagnosed.  My feet flare and burn periodically during the day, but especially at night.  You're right, there's so little information on this condition, however, if you are looking for a forum/support group - there are several good ones on Facebook.  I belong to a couple of groups and there is a lot of active discussion.  The groups are closed, you just need to send in a request to join.  
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    • Posted

      Hi, thanks for the info. I do know about Facebook groups, but to be honest, I don't really like Facebook, I mainly use it to find old friends etc. Actually, the association that I mentioned has a wonderful forum and support section. I have learnt a lot from them. I paid my membership fee merely so that they could keep going and bring it to the attention of doctors, as there are so few that know about it. I have just ordered from Amazon a pair of socks that you put packs inside to keep your feet cool or even hot if you want to and they are supposed to work wonders for night time. It was somebody on the association that recommended them. If you are interested this is the link ____ they are not cheap, but if the work they would be worth every penny! I only ordered one pair to try at first. I have a ceiling fan in my bedroom and don't cover my feet and legs, it used to work well, but as they have gone worse it doesn't do as much good now. Not only that on very hot summer nights it's wonderful. I didn't buy a cheap one as they are usually noisy the one I bought cost over £300 but it's very quiet. Just something else for you to think about, unless you have a husband or partner that would freeze if you used it! My husband passed away last year and he didn't like it unless it was really hot, but we had twin beds and so he used to get under the covers and was fine then.

      Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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    • Posted

      Hi sheltilife - I replied to your private message witht the link before I read this post, so thanks again for sharing your tips.  I hope the socks do provide some relief.  It's a great idea, and I wish there was a shoe version so I could wear something other than flip flops when it's cold outside!  My husband doesn't appreciate the cold air blowiing the bedroom either, but he's been a good sport about it.  I've only been using the fan for a couple of weeks now, but it does seem to make a difference for me. This condition is  miserable and my heart goes out to everyone who is suffering.  I'm really new to this conditiion - I've only had symptoms for 6-8 weeks but already it has taken over.  I also joined the TEA group, but didn't realize there was a forum on their website.  Where do you find it?  Thanks again for your message. 

      Jennifer

       

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    • Posted

      Hi jennifer, Yes sorry just looked again and it does seem as though you have to become a member to join in the forums, but as I said it isn't expensive and if it helps them to get EM noticed then that must be good. They have all sorts of contacts about the research going on and articles about the research. It's worth every penny to me. So, if you are happy to pay if you go to the membership item on the menu that will take you through the process of joining or of course when you get there you don't have to if you don't want to.
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    • Posted

      Hi again, 

      I did join TEA  and pay the fee back in March shortly after my symptoms came on.  However, I've logged on a couple times looking for a member forum and cant find it.  Can you tell how to join the forums?  

      Jennifer

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  • Posted

    hi Mike my name is Donna I 34 and have been diagnosed with EM. 2years ago but it started 3 years ago. Think after rapid deterioration with in a year my GP gave up and sent me to a rheumatologist. He is one of the top consultants has 9 years behind him, working with rare diseases. I came home after app the other day. Feeling so frustrated. I have to admit I am suffering. As this doctor said with empathy. He is sorry but not enough research has been followed through. They is no treatment management and certainly no cure. The only drug proven to work is aspirin. Have have this disease real bad, I have attacks almost every other day. More in my hands than feet. Swelling of the veins in my legs during EM attack has caused thread veins to burst. I am past my self. He said you have to try and not be stressed or anxious as can be a trigger. My goodness, of course I am going to feel anxious with no answers, causes and cure, he said I need to speak to ppl like your self and have therapy. I not sure if it will help? As talking is not going to stop my life changing horrible disease go away. My children and partner are suffering to. I spend half my day stood on ice "not meant to use" elevating what ever limb. I so low. I so feel for anyone with any symptom of Erythromelalgia as it is the most painful thing ever.
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