I have not been on the site for a while. Dr's suspected I have EM and I got into Stanford to see a wonderfully kind vascular surgeon, Dr. Leeper who said I should look into Complex Regional Pain Syndrome (CPRS), sigh. I was wondering if anyone else has had this experience, dx or if knows anything about CRPS? I am scared and confused and completely unsure of where to turn next. Thank you everyone Michelle :) <3
Hi, in individuals with erythromelalgia, associated symptoms are typically relieved with cooling. Many with the disorder may also experience symptom relief by exposing affected areas to cold air, such as through the use of air conditioners or fans. In addition, even those with mild disease may find themselves avoiding warm or hot temperatures in an effort to help minimize symptoms.Many affected individuals find that symptoms worsen with a dependent (or “hanging down”) position. Accordingly, episodes may potentially be avoided or reduced by elevating involved regions.
Here is a link to CRPS symptoms: http://www.meditouch.co.il/index.aspx?id=2488. Hope this helps.
Did your symptoms begin after an injury? I believe I had CRPS after my foot injury, but my symptoms improved after 3 mos of intense therapy. Then, a month or so later EM symptoms began in the injured foot and slowly spread to my other foot.
CPRS and EM have a lot of the same symptoms, i would have a doctor check. a second and third opinion never hurts, and that seems to be the pattern for finding out if it is EM. Good luck and hang in there. if you don't know what something is research it hun. the doctors won't do the research, we have to.
thank you both...such a long battle to answers. I did find I out I have idiopathic (for now) neuropathy in my legs and likely in my arms??? I am on my third opinion and trying to get out of my small town to larger hospitals. ty :))