Dercum's Disease Support Group

I am so sorry. Its so hard what you are through. I know I also have dercums. the pain is so intense it's hard to focus on anything. It hurts in every part of your body. I have tried all kinds of remedies, narcotics anything and everything that md any other suggest. so far nothing helps. I am diabetic and have 2 herniations on my neck. one is pinching a nerve down my right arm. I try to live with it as best as I can. I have a lipoma on my right hip pushing on all kinds of stuff just growing bigger and bigger. I can not put much weight on it. I was on top of my stairs at home. when I not thinking step down on my right leg. the pain was so sudden and intense that I fell on my back. That is how I hurt my neck. so I say dercums, is a pain in my neck. We both know it's a pain everywhere. I wanted to share my story because the hardest part for me is feeling so alone. not one of my family members or friends understand what I am dealing with. they all try to support me. but they just don't know how. It is not happening to them. I love them to death and understand they have their own lives to live. meanwhile I am home bound and in chronic pain. I guess, I felt compelled to say. You are not alone.

i was diagnosed with DD in March, I couldnt sleep at night, the lumps in my hips were excrutiating, i have them in my thighs and all down my right arm. it caused me to suffer depression, i then went to the doctors he prescribed me with anti-depressants they help to cope with the pain. All the pain killers just mask over the pain but doesnt really kill the pain. you have to adapt to help with the pain. I even had to buy a different car as i was crying everytime i had to drive my old one. like sandyOne says you are not alone. its just learning to cope with it.

Hi JS,
I know what you mean, and I'm sorry that you are suffering. When you first find out about Dercum's it can be overwhelming. There are a few things that I have found to help.

!st-
Try to relax as much as you can... sounds simple right??? Not! Try a warm (not hot) bath if you can stand it and take a pain med before you get in. By the time you get out it will have begun to take the "edge" off the pain.
2nd-
try to do something that you like. Read or knit or listen to your favorite music or tv show. Even if it is just on in the back ground it will be a "white noise" that will help to take the focus off the intensity of your pain.
3rd-
If you have a significant other, talk to them, cry if you need to and let them touch you. Sometimes just the touch of the one you love will help you cope better.

Lastly, your teeth hurt because you are uncontiously clenching your jaw from the pain even in your sleep. You might try a bite guard for night time, and try to remember in the daytime and loosen your jaw. It will help you if you are aware that you tend to do it and make an effort not to.

Please don't think I take your suffering lightly. I don't. Your pain is real and your feelings are valid. Talk to your doctors and ask about pain managment. It is a process to learn to cope with the pain and stress that the pain causes.
You are going to be ok. Choose not to let it take over your life.
Let me know if I can help, or just listen.
CJ

THERE IS AN ANSWER...IT'S THE DIET WE EAT THAT IS KILLING US LITERALLY. I HAVE DD, BUT I HAVE DISCOVERED THROUGH HELL AND BACK THAT WHAT I EAT IS A MAJOR CONTRIBUTOR TO THIS DISEASE. THIS IS NOT GOING TO BE EASY BECAUSE OUR SOCIETY, OUR LIFESTYLE HAS ADOPTED THIS LIST OF FOOD TO BE PRACTICALLY HARMLESS...IF YOU ARE WILLING TO SWALLOW THIS INFO, IT MAY SAVE YOUR LIFE..
READY..: SUGAR, SALT, ALCOHOLIC BEVERAGE, COFFEE, SHELLFISH, SALMONS, TUNAS, HALIBUTS, SQUIDS, TURKEY, PEANUTS, TOMATOES, CORN, SOY PRODUCTS, WHOLE WHEAT, RAW FOODS, COLD FOODS OR DRINKS (APPLE JUICE ETC), POTATOES, DRIED BEANS, LETTUCE AND OR BROCCOLI FAMILY, MELONS, PLUMS, PEACHES, PEARS, SPICY FOODS, BBQ, CANNED FOODS, JUNK FOODS, GRILLED FOODS, DEEP FRIEND FOODS, BOTTLED WATER, MANGO, PINEAPPLE, RED MEATS, LAMB, ...THE LIST CONTINUES AND DR. KAREN HERBST WILL TELL YOU MORE OR LESS HOW THIS DIET WORKS, BUT I AM ADDING NOT JUST HER ADVICE BUT THE ADVICE OF CHINESE MEDICINE; GO TO A CHINESE HERBALIST AND TELL THEM YOU HAVE "PHLEGM DAMP." THEY ARE WELL VERSED ON KNOW HOW TO REDUCE PAIN AND DIMINISH THE GROWING NUMBERS OF PAINFUL LIPOMAS. THEY SUGGEST YOU CAN EAT: EGGS, HOMEMADE FOODS, STEWED FOODS, BOILED WATER, SPINACH (SMALL PORTIONS) STEAMED VEGGIES, STEAMED BANANAS (2MIN) ORANGES (BOILED 1MIN) STRING BEANS, GREEN BEANS, BABY POK CHOY COOKED WITH FRESH GINGER ROOT) CHICKEN (SMALL PORTIONS) RYE BREAD, CHINESE GREEN TEA, WHITE FISH (E.G., CODS) PLAIN YOGURT, CHINESE VEGETABLES, STIR FRIED FOODS WITH A BRAGGS AMINO ACIDS AND HEALTHY SAUCE. THIS IS JUST A SMALL LIST. PERSONALLY I AM WEANING MYSELF OFF OF ALL FOODS BECAUSE THERE ARE VITAMIN SUPPLEMENTS THAT LITERALLY PROVIDE ALL NUTRITION NEEDED IN ORDER TO SURVIVE. I HAVE BEEN DIAGNOSED WITH DD.

My treatment that has helped me is morphine. but I need to take it several times a day. so far it has kept my pain level at a three when it was a nine or ten. I was hospitalized several times because I could not control the pain. I am happy with my treatments cymbalta works to. the pain I experienced in my chilhood in my thighs are the worst, also when the nodules flair up over my ribs it feels like I broke them. eventually goes away.different places flair up at different times but it is morphine that controls te painthe is consistent in my thighs and knees that is what brings me to tears and previous hospitalizations. I take BT meds and I have not had to go to pain management before the actual appt. no er visits and work is going good. I am on fmla which allows me to be off during flairs and I can't lose my job

I am sorry to hear you might have this disease, there is no cure or treatment you treat the symptoms. there are suggestions under treatment lyrica, cymbalta, neurontin one of these helps, support group which you have learn what you can about the disease you will need pain clinic, change of diet it all depends what your doc recommends. I can only hope that you do not have this disease. but try water therapy, acupuncture if you find a good deal. relax your life does not need to stop , enjoy what you can . I work 40hrs and I wish I could work part time but my husband was laid off and is looking for new job. I wear a knee brace because it helps with the knee pain. just find out what you can , read about it find out how your doc wants to start treatment until you find a treatment that works best for you. I sent a letter to medtronic and the pain clinic challenging them to finding a better treatment for Dercums I hope they rise to the challenge. Elch