Erythromelalgia

[artmama]

Our child was recently diagnosed with "probable" EM. His toes and sometimes fingers hurt every night. He writhes in pain and it is so hard to see. He always asks for ice to sooth them. He refuses to wear shoes and socks. He even does not like to wear a coat in VERY cold weather. He often complains of being hot. It is symmetrical. The problem with this diagnosis is that his toes do not get redness and they do not feel hot when I touch them and he is having an attack. But he is obviously in a lot of pain and it occurs frequently. The only thing he says helps is ice and pressure (he pushes his toes against the cold wall or floor). Do you think he could have EM without the redness? We appreciate any help or advice as this is so rare. Thank you!

[Dr Rajgopal]

Hi,
All the symptoms of your son suggest of Erythromelalgia except redness. It could be a rare case indeed. Symptoms do vary sometimes in different individuals- it could be asymmetric or may remain mild for a few years for other patients. It could be the mild form for your son. The intensity of symptoms varies and that is why there could be a deviation from the normal significant symptoms. Please continue the treatment and advise your son not to soak his feet in extremely cold water because it may damage the tissues and cause complications. Hope this helps you. Take care and regards!    

[Weesy68]

Have him tested for Lyme disease by a reputable lab such as IgeneX and find a Lyme Literate Medical Doctor, (LLMD.)  Erythro is one of the symptoms of many Lyme disease patients.  You do not have to remember  a tick bite or see a rash in Lyme.  Many ticks are the size of a poppy seed and over 50% of people do not recall a rash.  Visit ILADS.org or Turnthecorner.org for more information.  I have this and I have Lyme disease.  Both are painful.