Dercum's Disease Support Group
Adiposis dolorosa, also known as Dorcum's disease, is a rare disease characterized by multiple painful lipomas that arise in adult life. It occurs most often in obese postmenopausal women, but can also occur in men. The fatty tumors are most often located on the trunk and limbs with sparing of the face and hands. It was first formally described by Dr. Francis Xavier...
My fellow compadres! Stay positive! Try the lymphatic pump to help with pain. What is causing a lot of your pain is the edema in your system from your lymphatic system not functioning properly. When the trash cannot leave our body we get the fat tumors. This is how our body copes with the trash not leaving our bodies. I was diagnosed with DD last March from Dr Karen Herbst. I highly recommend you do everything you can to see Dr. Herbst. I now wear compression garments 24/7. I have the normal compression garments during the day. At night--what I refer to as my snow suit for night wear--it is like sleeping in a giant marshmellow and helps with the pain to sleep--extra benefit! I am also doing the lymphatic pump twice a day--might step it up some--it helps move the edema from my system. I have a jacket that I wear to pump my upper body and I have the leg up to my breasts that help my lower body. I have noticed that it does help with pain. However, I can also feel it when the edema moves back down my system. Working with experimenting with the time of treatments to see if I can get it to help longer. When I am bad can hardly move elbows, shoulders, knees, ankles. It effects my major joints. When I do the pump it helps with pain and movement--at least for a while. Dr Hebst has discovered something new this last April about DD. It also causes severe neuropathy of you limbs. Discovered this when she did a punch biopsy of me and tested other patients. Don't quite know what this means for us. I know I do have little to no feeling in legs and arms--hopefully this will return to some degree. I will keep everyone updated on my progress. One thing I discovered on my own. If you are swollen and in a lot of pain (your tumors) it is because your edema is out of control. You need to do the lymphatic pump or MLD therapy to take the burning and pain out of your tumors. I did not respond to MLD--but I am responding to the lymphatic pump. I thought for a while I would have to increase the pain medication-but since starting the pump I am maintaining with Norco. Major accomplishment for me!
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
My bumps under my skin -etch so bad-but not really bad pain for a pump,etc. they are no bigger than a dry red bean and they are right against each other, you can't move them around and mostly on my legs & arms. i have had a test done by one doc and what they said the next doc says no to that but can't tell me anything else and when I mention DD they don't know & won't do any thing but send me to another doc. I will try again to get with the doc online everyone talks about.. hoping to hear from you, and glad you have found something
The only Dr. in the country is Dr. Herbst in San Diego. She can get you on the right path for treatments and help you. She just took an interest and has been studying DD for a long time. She is learning more about the disease all of the time and helping with treatments. I know it is expensive and it took me withdrawing my retirement to get to her. But it will change your life to have the help and hope in your life. I have a GP that helps me locally--but mostly with meds that Dr. Herbst recommends. I am doing a little better since starting my treatments--but we have to constantly adjust things--all part of learning to manage your life and DD. Good luck to you and I am here anytime to help. If you would like to write to me personally--my email is cam51167@gmail.com.