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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SYLVIA BURLESON
Saturday, September 19, 2009 at 10:43 PM
Thanks, Sylvia, for recommending Dercum's be added to this site. I have just received a tentative diagnosis by my family doctor and am waiting to see several specialists, a neurologist and a rheumatologist. Most doctors have never even heard of this disease and it has taken me over 20 years to find out what is wrong with me. I am now 46 years old and the pain is so intense sometimes there is nothing I can do but sit and cry for a bit. None of the OTC pain meds work. I am trying Low Dose Naltrexone (I think it is helping me sleep better) and something brand new and not yet on the market called Cobroxin. (www.cobroxin.com). Cobroxin is a very dilute formulation of cobra venom, enough to dull the pain without being toxic to the system. I was told it works as well as morphine, but it has NO side effects (hallelujah!) and will be sold over the counter in most places when it hits the market. It only became FDA approved last month and is a medical breakthough in pain management" I has been working reasonably well for me by bringing the pain down from an eight or nine to a three to five I am also going to try Neuragen, a topical pain reliever which is absorbed and quiets the overactive nerves.
Dercums Disease (aka Adiposis Dolorosa aka Anders Disease) feels like nerve pain, muscle pain, tendonitis, bone pain and many people get migraine-tension headaches. The pain is much worse than Fibromyalgia in my opinion. I have been told that the pain cannot be as bad as I describe it, but as my doctor is seeing my health and my ability to function deteriorate over the years, he is beginning to understand that I need answers now before I become totally disabled by it.
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SYLVIA BURLESON
Saturday, September 19, 2009 at 11:00 PM
I am sorry that you have this disease. If you search it you will find some articles you can give to your doctor. The pain is disabling. You can have both fibro and DD...most of us do. It is hard for people to understand just how bad this disease it. Your pain endings become so sensitized to pain it becomes unbearable. The lipomas like to grow in rows along nerves. The ones from the spine along the sciatic nerve are horrible. Many people's start in the rib cage. The fat is unsually heavy as the giant fat cells are full of lymph that has not been burned for energy or escreted from the body,so the fat hangs down. You also have the other associated symptoms...IBS, dry eye and mouth, depression, headaches, pain standing or walking, joint pain, swollen ankles, thyroid problems, sleeping problems, extreme fatigue, brain fog, apron of hanging fat and camel's hump. I am already disabled by it but I am 64. I want to help inform all of the women who have this disease. Good luck...Sylvia
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Don't be surprised if your medical professional does not know about Dercum's....most do not. If you go to Dr. Karen Herbst's web site you can read about Dercum's. I am in two support groups and that is very helpful. I was so glad to finally at least put a name to my terrible pain. I have lumps all over in my fat layer. I am disabled by the pain and other symptoms of DD. It is interesting how we all have the same symptoms. You will be amazed. Good luck and I am sorry that you have this terrible disease. Hugs, Grandma Sylvia