What about the pain?


I and my doctor think I have DD, based on information and correspondence from Dr. Herbst but I have a question about the pain. I don’t know that I have pain bad enough to take pain meds. What type of pain and where is it located for you all? My lumps are tender, the knots more so. It sometimes hurts to move my arms when these are flared up. My breast lumps seem to be the most tender. I have some on my leg and abdomen, legs don’t seem to be a bother but abd ones are tender, that’s what made me feel around and find them. I do have a bad pain at times in my right groin. I have had to take a pain pill in order to go to sleep at times with this. I do believe there is a lump there as well. Now if you push deeply anyplace on my trunk and arms, it’s painful but I thought that was normal.


Thank you both for responding! I was thinking, maybe I don’t have DD because I don’t have constant pain. I asked some co-workers if it hurt when I pushed on their back, (even did it to one girl) and they said, no. I said, it doesn’t feel kinda like it’s bruised? No So maybe what I experience isn’t normal for everyone! The outside of my legs don’t seem to be as sensitive as every other place. Oh, yes, I have to commute to work and benedryl knocks me out so no strong pain pills yet!


i take painkillers three times a day everyday. if i dont then i am in alot of pain. I cant sit as my legs and lower spine hurts, my elbow joints hurt, i constantly have headaches, and also pain in my wrists. i think i have fibromyalgia too but finding it hard to get that diagnosis. as i have so much pain, my doctor advises me to take the meds. i deff need to take them at bedtime. I wake up and cant get out of bed, i sometimes have to take my meds before i get up.

Its basically up to you, if you are flaring its best to take your pain meds they do help a little, unless your lucky enough and it may rid you of your pain.


Hi Kathieh,
Pain can be all over our bodies. It can be aching, throbbing, burning, stabbing, and any other description you can think of. Some tumors only hurt when pressed on and some of mine don’t hurt at all. It is not normal for it to hurt when you push deeply on your trunk or anywhere else. For many years, I thought it was normal that my legs hurt when pushed on or poked. I was wrong! I don’t take pain meds other than Ibuprofen when it is extra bad. Some days I wish I had something stronger, but I would lose my job. (I drive a school bus) Anyway, I think it is wise to put off taking prescription pain meds as long as you can.

All of them affect your liver and other organs so, if you are not in terrible pain, stick with tylenol or what ever your doctor recommends. Taking pain meds will also lower your natural pain tolerance over time, so taking them when you can manage without them is actually counterproductive. You’ll know when you really need them. (I am not telling anyone to suffer needlessly. If you are in a lot of pain, by all means, take something!)

Hugs and spoons,



I feel for you. I would hate to have to take pain meds three times a day in order to function. I know many of you are in that position. I wrote to Kathie telling her to put off the meds as long as she could. I stand by that, but wanted to make sure you and others know I am not against taking them if you really need them.




you may well have DD. I went months after my first flare with no pain. I felt like a fraud. DD can be slow progressing, it has been with me, I got my first Lipoma back in 1988 more appeared over the years but it wasnt until last november when i actually started to hurt so much, i last until march when i eventually braved it to go to the docs, i thought it was just purely down to my weight that was causing the hurting. I totally understand you thinking you dont have DD. If your lipoma hurt or ache when you apply light pressure than theres a chance it is DD as the lipoma attach itself to the nerves.


You know, I thought it was probably weight related as well. I have gained so much the past 4 years!



I agree with Geordielass. You may well have DD. I have had it most of my 54 years. There has always been pain but, like you, I thought a lot of it was normal. The rest was attributed to my other health problems, like fibromyalgia. It does get much worse with age, but hopefully yours will progress slowly like mine has. I’m in considerable pain now, but still not enough to stop me from working or make me take strong drugs.



I agree as well…I didn’t have this much pain before my first severe flare up and now ever since its been a lot worse…I am also getting more lumps inside the diffuse lumps…Doers anyone else have this experience??


The weight gain is a symptom of DD. Many sufferers gain up to 100 pounds in 5 years. We blame ourselves and many doctors blame us when we did not cause this weight gain. Yes, the inability to move without pain tends to make us more sedantary but the weight gain is due to the abnormal fat cells and the way our bodies burn or fail to burn calories. Print up some of the great articles you will find if you put Dercum’s Disease in your browser and arm yourself with copies when you go to doctors. If you have droopy fat full of painful lumps…you have DD! My doctor reduced my main pain med to see if that would reduce my swelling and at the same time I am trying to adjust to a CPAP machine so I am not sleeping. The sleep disturbance in DD and fibromyalgia is a fact. I don’t think I can stand this amount of pain but I do want to have less painful swelling of my feet and ankles. I have to work with my doctors to find a pain drug that does not cause swelling that I am allowed to take as a diabetic neropathy insulin dependent diabetic with a less than perfect heart. I really only started on pain meds after I retired a few years ago. If any pain meds work for you I would jump at the chance to take them…I hate being in so much pain all the time. After 40 years of DD the pain is not just confined to your lumps, at least mine isn’t. I hurt everywhere now. Take it one step at a time and help raise funding for research and maybe some of the obesity research will lead to something for us! It is important to keep your sense of humor and not let DD rule your life. We need to send all those aliens back to Mars! Hugs and Good Luck : ) Grandma Sylvia


Oh yes, I have lots of smaller lumps within the large areas of diffuse “flat” lipomas.