Please add Dercum's Disease to this site. I have it and it is very painful
This is considered a rare disease but many people have it and are misdiagnosed with fibromyalgia. Dr. Karen Herbst has a web site where she explains the disease. If you do a serach for her name or Dercum's Disease you will find the information. I am in constant pain and I have been diagnosed with both fibromyalgia and Dercum's. The difference is that with Dercum's your lipomas are very painful as they grow on nerves with tentacles that squeeze the nerves causing great pain. Please add this disease and help educate doctors and victims as this disease in often underdiagnosed. Thanks Sylvia Burleson
Hi Sylvania,
Thanks for your input - I'll start looking into locating some information on Dercum's to post on our site.
-Dan
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omggggg sylvia ya may have uncovered exactly what is going on with me... ive always thought it was RSD..but after doing more resaerch on this.. as i doo have those hardened lumps but i just assoc with the RSD...and it def gets 10xs worse during periods and there are alot of times just the smallest task completey deplets my stamina and i need 12- hrs of sleep a day... 10 thru the night and 2 hr nap in afternoon or i get horrendous migraines....agin ty 4 this insight ill def b bringing this attn to my pain mngt dr and pcp and see what they say...
Hugs and God Bless
GuidedGal
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