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...
Hi everyone! since we have a disease with no treatment or cure, I have been trying to log down what works and what doesn't so Ican help others along with your assistance treatments that work for Dercum's so we can give others with this Disease steps in how to manage the disease. I will start I have lipomas but the majority is lipomatosis which is everywhere. The surgeon will not remove the lipomas unless they are large. If tries to remove the lipomatosis I will have nasty scars, and the lipomasand lipomatosis will reappear. so for me surgery is not an option. MY Program consists with : 1. Morphine it works best for me, take extended release 3 x a day for maintence. once a day did not work. dilaudid for BT medication
2. Muscle relaxant 3 x a day .
3. Cymbalta for depression, neuropathic pain
4. lidoderm patch
5. GERD diet
6. acupuncture or water therapy(aquatic)
7. walking (exercise)
8. for me I would like to get intrathecal pain pump my reason is: the morphine works the best, the disease is slowly progressive it will become worse overtime and the dose can be adjusted. you don't need as much morphine with the pump, and it cuts down side effects.
Since I have started these treatment except pain pump working on it my pain level has been consistenly at a level 3. even my flairs went from 10 to an 8. I have not had to call pain management and I have to had to go to er for pain control. Fatigue is the biggest problem now.
A PAIN LEVEL 3 IT IS WORKING: PLEASE TELL ME TREATMENTS THAT HAVE WORKED FOR YOU SO WE CAN MAKE A LIST TO HELP OTHERS!!1
2. Muscle relaxant 3 x a day .
3. Cymbalta for depression, neuropathic pain
4. lidoderm patch
5. GERD diet
6. acupuncture or water therapy(aquatic)
7. walking (exercise)
8. for me I would like to get intrathecal pain pump my reason is: the morphine works the best, the disease is slowly progressive it will become worse overtime and the dose can be adjusted. you don't need as much morphine with the pump, and it cuts down side effects.
Since I have started these treatment except pain pump working on it my pain level has been consistenly at a level 3. even my flairs went from 10 to an 8. I have not had to call pain management and I have to had to go to er for pain control. Fatigue is the biggest problem now.
A PAIN LEVEL 3 IT IS WORKING: PLEASE TELL ME TREATMENTS THAT HAVE WORKED FOR YOU SO WE CAN MAKE A LIST TO HELP OTHERS!!1
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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...
A very good psychopharmacologist suggested MODAFINIL (Provigil, Nuvigil or offshore generic) for drowsiness, I have used this for a number of years and it seems to be quite effective, and does not seem to have much of a tolerance or chemical dependence profile like the opioids. I also take cymbalta, There is a similar SNRI medication "EFFEXOR" which I have not tried, but which apparently also has a generic equivalent available "offshore". Due to the incredibly high deductible on my health insurance policy, and their limitation on the amount they are willing to pay for, I am always looking for legitimate offshore genetic equivalents to make up for what health insurance will not pay for.
Hoping that you get through 2011 with as much good experience and as little pain as possible. StanF
Generic name milnacipran, I have no experience with it but it was mentioned by same doctor that recommended cymbalta and modafinil. I have bought offshore versions of cymbalta (duloxetine) and modafinil from a place called "EDandmore" on web. They primarily deal male enhancement drugs but also seem to be able to get these others through one of their partners. I do have concerns about quality and legitimacy of the offshores,but they are so much less expensive than the US prices that i use them to help fill in my health insurance "donut hole" which is more like a black hole in my case $$$$$ out of pocket before they pay a nickel, and thats the least expensive TOTAL cost of health care I can buy because of constant dr visits, blood tests, medical imaging, prescriptions, and (NOT COVERED BY INSURANCE) many supplements suggested by naturopathic doctor.
How have things been for you, it has been a while! sf
I have other pain conditions that the pump has worked wonderfully for. I can say the pump changed my life.
But I have to tell you that the pump works better on my pain from the waist down as morphine pools low in the body. The Lidocaine patch has helped somewhat but I wish I could get these lumps removed.