Beginning experience with DD?

Dercum's Disease
#1

I am wondering how other’s DD started out. I am not diagnosed yet but am pretty sure DD is my problem. I wonder if anyone would like to share what they experienced at the onset of the disease.

I started getting leg pain in December 2007. It continued but was mostly during my menstrual cycle. I made the connection that the pain was radiating from lipomas in my legs but was told “lipomas don’t hurt”. I believed that for awhile but more pain made me really know it was the lipomas… I was then told “it is a coincidence that your pain in located where you have lipomas”… later I was told that it was all in my mind because lipomas don’t hurt.

Anyway, my pain got worse and longer each month. It started out similar to sciatica pain but then they started to sting and burn too - It isn’t constant, but not a day has gone by without pain since August. (but I sometimes go 4 or 5 hours with no pain).

In December I only had about 4 and now I have at least 25 lipomas. Now they are in my legs, torso, back and forearms… but the ones in my arms don’t hurt at all which is strange. (not that I am complaining, haha)

I wonder if my symtoms are similar to others when they first started getting symptoms. If anyone would like to share what they experienced at the onset of the disease, I would like to hear it :slight_smile: I am just curious if my onset experince is normal for DD.

((thanks))

#2

Does anyone have papercut type pains when you walk with loose pants on? I get these “TINGS” that are not deep like the lipoma pain, but like a surface thing… like my skin has tiny paper cuts right on the surface. Oh maybe I just have dry skin, LOL… I am just freaking out about all this right now.

#3

OH I forgot to mention that when they were trying to find the cause for my leg pain they found a huge tumor on am ovary and I had a total hysterectomy… I was still recovering from that when the pain got REALLY bad (stinging and burning)

I read that trama may cause DD to start or progress… I guess a total hysterectomy is trauma.

#4

I had noticed some knots in my upper thighs and in my abdomen that weren’t really painful but last November, I had a large cyst removed from my wrist and carpal tunnel release. The next day, I had knots, very tender, in my upper arm. I thought it had something to do with the block that I had for surgery. Then, the next day, I had a line of very tender knots in my forearm of the other arm! It hadn’t had anything done to it. I have gotten many more in the past 9 months. I had one from the forearm biopsied to see if it was lipoma in June, by the next day, I had a whole new line of new ones on that arm. I do believe that surgical trauma activated mine.

#5

It sure is, Suri! Surgery often triggers a flare. I had 6 of them the year my DD went into overdrive!

Hugs and spoons,

Pamela

#6

hi

It seems to be very common to get problems with knees. Often people think that they have arthritis or fibromyalgia. DD can come and go. It flares up and gets worse. In the Swedish info they have 3 different types of DD. I got two very bad flares and had pain every where and gain very rapidly very much pain. I did not that I had lipomas or for that matter did care of them, just the pain went away…

Many people believe that we are born with DD and it gets worse if some things happen in the body and in our lives. There are studies that show some kind of inheritance.

I remember when I was little and fell of my bike I fainted so many times that my parents took me to the doctor. Maybe my pain was abnormal already then?

If you want to get the Swedish info mail me. Do not get afraid, there is light in the end of tunnel, hold on!

Arieldiva

#7

Hi Suri,

Mine started as a stinging pain in my upper outer thighs. If I touched it on a chair or my hubby touched my leg. I also had the same problem with pajamas and pants. That is when I realized it wasn’t normal. Multiple flares later it now invaded my arms, limiting mobility on my right arm. It feels numb on the skin but I have deep pain and numbness in my fingers on the ulner side. I have chains of them going up my ulner nerve.

Hugs.
Christine

#8

Thanks you all… I feel more confident that I have DD now. So much of what you all say sounds just like me.

I realize now more and more that I have DD. I started having joint pain last year (right knee, left ankle) and I self diagnosed arthritis. I get awful burning pain in my right toe sometimes (I mentioned that to my doctor and he gave me a look that said, “Your Insane” so I never mentioned it again)

I am really having a hard time today. I am having them pop up constantly!! Well, I am exagerating a bit… but I have so many now that I didn’t have 2 days ago! My right thigh is so lumpy, it is unreal how fast I got more. My right thigh is starting to have very few spaces without them!

THANKS a BUNCH for sharing!! I really do appreciate your time and just the company.

#9

Papercuts?

Suri, I think I know what you mean. Many of us call those bee stings. I have it on good authority that it’s caused by tiny tears in our connective tissue. Happens all the time, long pants, capris or shorts. Also sometimes my skin feels like I have been scalded with very hot water, mostly in an area where new lumps are growing.

Hugs and spoons,

Pamela