It seems to vary…maybe some just notice it earlier? Mine started at age 21 and I noticed it right away and went to a doctor for lumps in my rib cage.
I was in my early teens when the lumps appeared, but had the other symptoms as a young child.
Mine actually started at 16 (lump above eye I thought was a cyst)but I didnt know what it was until I was in my 40s. I had lumps removed at 43 but didnt really start getting tons til 49…now there is alot more…
Found my first lump about 8 months ago. I had just turned 36. The lump could have been there for quite some time, as I found it by accident, I was having muscle pain in the area of the lump. Still not convinced its Dercums. I am convinced I have some form of Lipomatosis, though.
Its hard for me to remember exactly when it started but I am pretty sure the lumps started in my mid twenties, The real trouble started in my mid thirties, with the fatigue, unexplained pain, and what I always called my " blue dots " growing up and down both arms.
I went to my gp and she had no idea, so she began sending me to different specialist including a hemotologist, who disregarded them as harmless lipomas.
Its was by chance I got to see a dermatologist in our area that used to practice Internal Medicine. After years of seeing all kinds of doctors and endless frustration, he simply said Oh you have Dercums Disease. (to myself I was thinking OK what the H@LL is DD?)
He said it was nothing to worry about and if I wanted them rememoved he would do it, but they most likely would come back. They did.
Now I go one day at a time, my GP and I are good friensd and she helps me manage it through meds and nutrition. Haven’t been able to motivate myself for the “diet” yet, but I am working on it.
I was first bothered by lipomas about 7 years ago, and diagnosed about 2 years later, but I hve had symptoms just about all my life. Sudden bursts of weight gain, for one, when nothing in my life had changed. Pain in my legs beyond what “growing pains” should be. Small pebbly lumps under the skin in several places, always called “ganglions,” by my mother and mdy doctors. Looking back, it all fits, and I was quite young - perhaps less than 10.
me
i was 20 yrs old when i found my first lipoma, it was on my back near a rib, and i was 3 months pregnant. I got my next load of lumps when i was 33. they become painfull around 4 months ago.
Thanks everyone…for your replies…it seems to start young…a lot of us first noticed lumps in ribs…like me…I wonder if those leg pains were related that our Moms said were growing pains???
Hugs to All…Sylvia
Most of the symptoms started as a very young child. Lipomas began in 20’s. stonel
Hi Sylvia,
Yes those childhood leg pains are related. (I can’t remember who told me for sure, but it seems like it was Dr.H) I worry about my daughter because they were extra bad for her as a child too.