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Frequently Asked Questions

 

The information contained below is intended for generalized and educational information only.  Please seek further information or diagnostics from your doctor.

 

Are there other organizations that have information about this condition?

Yes, there are several that may offer additional information. One valuable resource is the National Organization of Rare Disorders (NORD). They offer a report about the basics of erythromelalgia and can be reached at: www.rarediseases.org

TEA offers a Networking Program to help put people in touch with others who have EM. To join this program you will need to be a member of TEA. Go to Become a Member on the Navigation bar on the home page to join TEA now.


What is being done to find a cure?

There is currently no known cure for EM.  However, some patients have diligently pursued treatments that have made some  improvement in their day-to-day lives by reducing symptoms to some degree.  On rare occasions, remission has occurred after use of a particular drug or treatment.  Such occurrences are described in articles found on this website under Articles.


Is there a cure for Erythromelalgia?

Please read about the research to date at the Research tab above.


What can I do about my symptoms... today?

Elevation of the affected part usually works well, also cooling of the area is generally effective temporarily. However, be aware that icing and soaking in cold water can cause permanent tissue damage when used for long and consistent periods of  time.  Even temporary extreme changes in temperature can cause a cycle of flaring that is difficult to break. Please consult your doctor prior to undertaking ANY treatment or therapy.
 


I've been to my doctor and no diagnosis was made, now what do I do?

 Don't give up. The diagnosis of any neuropathy or syndrome that is considered a  rare disorder is very difficult to make. EM has no test or conclusive evidence that facilitates a diagnosis, and many doctors may never have heard of EM or seen a case to compare yours with. Try visiting with a specialist in neuropathies, pain disorders, dermatology, etc. Most major medical centers should be able to help you locate a doctor with experience in diagnosing and treating EM. More dead ends?  Contact us, we may be able to help you connect with one. We also can suggest reference materials for your doctor to use in helping treat your condition.


How do I find out if I have Erythromelalgia?

Erythromelalgia generally affects the feet and hands (although it can affect the face and ears as well as other parts of the body). There is usually a warmth and discomfort that is often characterized as a burning sensation. This pain is almost always accompanied by redness and/or swelling. The symptoms are generally made worse by putting the extremity below the level of the heart and by external warmth.  The pain is relieved by elevation. The cardinal feature of the disorder is that the symptoms may temporarily be relieved by cooling of the affected area. A medical doctor may be able to give you an official diagnosis.

Is Erythromelalgia a recognized disorder?

While some doctors may not be very knowledgable about erythomelalgia, they all will be able to find it listed in the billing codes. Erythromelalgia and erythermalgia
are listed under neurological disorders and is identified by the number 443.82 in the ICD-9 code list as of October 2005. Many searchable locations house articles and
information on this disorder. Erythromelalgia is found in Medline, National Organization of Rare Disorders, and many more.

ICD-10   I73.8    Other Specified Vascular diseases

ICD-9   443.82    Erythromelalgia

OMIM   133020   (NCBI - Online Mendelian Inheritance in Man)

MeSH   D004916   (National Library of Medicine - Medical Subject Headings)