Dercum's Disease Support Group

Sorry my title doesn't sound very manly, sounds like a wuss...the truth is that, I am scared! and I am not ashamed of it and you know how I feel. I dont know or think I have dercums disease, but I figured you guys can help me figure it out. and I apologize i posted this in the wrong section earlier.

Please read my story..

I have had my first lipoma on my right forearm when I was like 14. It never grow bigger, when I was about 24 I got into bodybuilding and kick boxing. Took MANY MANY weight lifting supplements and whey protein, (NO STERIODS). After heavy lifting. That was also the year I started to drink alcohol for the first time, believe it or not.

When I was 26, I was a extremely fit and packed with muscles and six pack meaning very low body fat percentage, that is when I noticed, I found a few more lipoma lumps on both my forearms like 5 on each, and like 3 on bi and triceps. Over all I had about 15 in total, including the very old one I had when I was a kid.

Now I dont know if these new lipomas were all along, since my body fat percentage came down, I see them more prominently or it was a side effect of my supplements NO2 such as superpump250 or my new habit that I started drinking alcohol occassionaly.

The important thing is, NONE OF THESE LUMPS were PAINFUL AT ALL. I squeeze them to no end, no pain. Except one of it was very tiny, and I pressed it too hard and it pained. But it stopped after a week, no more pain. My first and oldest lipoma I had since I was 14, stayed the same size, infact flatted out when I got older, that is upto 27. Almost 13 years.

I recently got almost all of my lipomas removed by a plastic surgeon last week. The biopsy came out as possible angiolipoma that are yellowish and very well encapsulated. They called it angiolipoma because they had a little bit of vein going on and the location of the lipomas were forearms.

Now, I read about angiolipomas but I am not sure how they are related with Dercums disease.

Basically I want to know if I just have multiple lipomatosis or Dercums disease.

Reading that if they dont pain, it aint Dercums disease, Im not sure if this is true. Can someone confirm this please?

I do not have any lipomas on my body, or I may have one tiny lipoma on my left thigh, and that was very small that it stayed there for almost 5 years.

I do not feel any other symptoms. Except Last month I was able to dead lift over 400 lbs, but 3 weeks ago I felt a bit tired and was only able to dead lift about 300 lbs, but it went away. I still regularly work out, but not this week since Im waiting on my incision sites to heal.

Please help me, im scared. I want to be able to work out all my life and just live a peaceful happy active life. Im 27 now, and Im in love wiht a girl. If I have DD, I dont know what I could do.

PS: My father had one single lipoma removed when he was 40, and he doesnt have any lipoma now.

Darktrance...I am so sorry that you are going through this. The angiolipomas that were removed are very common in DD. I have not heard of a case of DD where the lumps were not painful. Their tentacles frequently infiltrate nerves causing pain. You could have some that are not painful but I would think the ones you had removed would have been painful if you have DD. Please review the other DD symptoms in the articles above. DD is not just painful lumps but also has a lot of other body effects. If you have IBS, chronic fatigue, dry eyes and mouth..and so on..it is more likely that you have DD. I don't know much about multiple lipomatosis..that may just be a term for what is really DD. I would read about it and see what you think. Maybe the plastic surgeon can refer you to a doctor who may threat DD...I wonder if he has seen other patients with the same type of lipomas...and what he thinks about DD. I think that if a doctor can not treat you they should refer you to someone who can. It is difficult to find a doctor who can treat you or will treat you for DD. You have to just keep working on it. It sounds like you are doing this already so just keep it up. If you have DD or think you may have DD...we will try to help you as much as we can. Welcome to the group. Hugs, Grandma Sylvia

Isnt that what distinguishes DD from lipomatosis? The fact that DD is painful and lipomatosis is not? Also lipomatosis tends to run in families whereas DD is autoimmune a lot of the time.