My back and my neck and shoulders is hurting so bad, its from the ton of lumps I have, Im sure…Does anyone else have this too…And tonight I could not use my knee and it hurt something feirce started to massage it and found a lump on top of my knee cap…
hey gf - how long have you had dercums I dont remember. Do you feel like you are in what they call a flare ? Or are constantly in a flare ? I have lumps growing everywhere too. Have you tried lycria ? It made a big difference in how I feel. The stinging/itching feeling is gone. It was driving me nuts. I am so sorry you are hurting so bad.
I havent really come to grips with this thing yet. I am trying, but today when I went to see my grandbabies and babysit for a couple of hours, I could barely do it. My memory is bad. I could not remember what coleslaw was called today. COLESLAW I have known coleslaw for all my life.
Well gf i hope you have a better day. Hugs.
calle//carin//az
Hi Calle,
I think I have had it for over 20 years. I had two painful areas in my abdomen that the Dr. said was some thickening of the skin. After taking prednisone about 4 or 5 years ago the lumps grew everywhere. I have always perspired heavily and felt way too hot.
Sorry you have been having such a rough time,
Joan
Oh yes, my neck and shoulders have been driving me nuts this week. In fact, I have had a bad headache for 9 days now. It let up, almost to the point of gone, yesterday but it is back full force this morning. I have had to sleep with an ice pack under my shoulder a couple of times this week. It felt like someone was twisting a knife in my shoulder blade.
I also have lumps in my knees, below them, above them, and behind them in the crease. Sometimes I can walk okay and sometimes I can’t. This is no fun at all!
Pamela
I was diagnosed with DD in Sept. I have had lipomas all my life but never knew what they were.I assumed they were cysts.I even had three removed in 2000 but they grew back.
I got extremely ill in 2005 and finally broke down and went to the Dr who said I was diabetic.But I found a ton of lumps and started researching lipomas(I remembered the name the surgeon said the lumps were that she removed) and found DD…after reading many many articles and emailing Dr Herbst I took all the info with me to my Drs appt and he read it and agreed that it had to be DD…That was in Sept last year…I had many flare ups but never knew what they were before then…
I have had since then a lot more lumps grow and A LOT more pain.I was taking Naproxen but it did not do a thing for pain…So I am on Tramadol now (he also gave me Ibuprofen 500 mgs but it does nothing for pain)I am trying this program called Weigh Down. It is a faith based approach to life…It cant hurt…I am not doing it to lose weight but I am doing it for my mental and spiritual healing and well being…I slipped off the diet Dr Herbst recommended and now I am paying for it…
There is a lot more pain eating red meats and dairy…This weekend I am going back on it…
At this moment in time its my arms that are killing me. The area I started to first really notice the painful angiolipomas were on my left arm, its by far the worst place on my body as far a the amount of lumps that my arm is starting to look like Popeyes, the swollen forarms but actually my whole left arm is swollen and bending the elbow is so painful. I can barely lift it anymore. I tried Lyrica a couple of months ago but I think I increased it too fast. I am going to try it again at a slower pace. But if it makes me too sleepy again or dispondant I will give it up. I have been on tramadol for a while, it helps more that anything else but the pain is still there just not as intense.
Brain fog is very frustrating, I can’t remember the simplest things sometimes. The words won’t come to me. Just like “coleslaw” little things like that drive me insane. I feel like I am loosing my mind.
I am very thankful to have this forum to vent too, we need to vent to each other to keep us from going crazy.
Thanks to all of you for your support and kindness.
Hugs and Love to all…
Brennie
I need to vent too, only i think sometimes when i do it at home and to friends i get that glazed look when pple pretend to be listening and really thinking ‘oh i wish she would shut up i am sick of hearing all about it’ politely. The most painful areas are my right forearm where there are a couple of large lumps the size of extra large eggs, and one restricts the bending of my elbow, i have another which is extremly painful on the outer upper arm and thats really sore to touch. My left leg is painful on the outer upper thigh, it feels like someone is stabbing a knife into me and twisting it…i thought it was sciatica but the pain doesnt run down from my spine. on a morning i am so stiff its painful to get out of bed, I suffer headaches i once told pple i actually thought i was suffering migraines even tho i have never experience what a migraine is. my right leg especially in the groin area is affected when i drive. the pain is so bad i am reduced to tears. I have started to take a hot water bottle into work as when i am sitting my right shoulder and part of my neck gets so stiff and painful. Sometimes i feel like i wish i could be put down…lol gotta laugh about it…especially today as its my worse day yet.
thanks for letting me vent
geordielass