Dercum's Disease Support Group

A good posting by one of our newer members...Hopefullee...

Welcome... I have just found this site just a few months ago and can understand how frustrating it can be to try and find information to help yourself. Here we try to help each other ... sharing bad n good days and medical advice though we all state that it our personal opinion and we do have lots of that on a bad Dercum day..  I have found great cAomfort here in MDJ.

I understand that you are feeling very down as Durum’s disorder is very nasty in its nature and some days are hell other bearable. I too have no insurance or doctors that can help me at present.. I am hopeful that I haven’t exhausted all avenues yet... that’s me screen name.

My tumours are everywhere... feet, ankles, calves, inside knees, back thighs, outside hips running across my stomach and into my groin, one huge one spreading around my back and under across my ribs joining at the sternum.... and they all hurt like hell. Some I would cut out myself if I could get to them... BUT I KNOW NOT TOO. I had a huge one at the back of my thigh and it was great to have the thing off, it hurt, it felt like it was alive tingling and twitching. I am sure I could feel it growing... ugghghghgh. Under local anaesthetic at my local doctors surgery I had it removed before we knew that it was a Angio lipomas ( a subcutaneous nodule with vascular structure, having all other features of a typical lipomas. They are painful where normal lipomas are usually not)

If only we had known as now the awful thing has grown back with a vengeance... within 12 months it is now grown from the middle of the back of my thigh out wards into my buttock and into my knee joint... in just 12 months and its still spreading. The matching one on my left leg has not grown hardly at all but it is still very sore. I believe that the tumour ‘seeded’. My only option is now liposuction of all the areas. My first ‘quote’ from a cosmetic surgeon was $50,000 and he said just to top my day was he wouldn’t even do it for me as he knew I didn’t have the cash and after seeing the ‘seeded ‘ tumour he refused as the complications were going to be too hard. Well that was a real low point for me but I now can go Medicare and hopefully the larger hospital will do it as the one here wont either...

But I know even on my worst day’s that on this site I can vent my frustrations out and just knowing that there are other’s like me... I am not ALONE ... I think that has been the best help I have had as I read as many posts as I can, it helps me feel NORMAL in this not so normal body..

Please read the links and also please please do not remove the lumps yourself..... Even though I know you probably just want to bite them out some day’s..... But they may spread or you may get an infection. If the area becomes inflamed it may cause another one to form. Here are a few links and don’t forget Utube as there are a few excellent clips from Dr K Herbst....

Utube http://www.youtube.com/watch?v=MyFZ7w5oAaw&NR=1

http://members.tripod.com/Dercums_Data/

http://fatdisorders.org/

http://lipomendercum.nl/ Adiposis_Dolorosa_Is_More_Than_Painful_Fat_-_Dec_2007.pdf

http://www.dercumsociety.com/

Hope this helps and remember you are not alone

Hopefullee

Previous discussions I participated in:

Fundraiser for DD~

Dercums Disease Lurkers

Media coverage in Australia

Post edited by: grandmasylvia, at: 09/06/2011 04:44 PM

Hi Hope you don't mind..I put a sticky on your post as it is such a good one for new or prospective members to read. Thanks! Hugs, Grandma Sylvia

Type I, or the juxta-articular type, with painful folds of fat on the inside of the knees and/or on the hips, in rare cases only evident in upper-arm fat

Type II, or the diffuse, generalized type, where widespread pain from fatty tissue is found, apart from that of type I, also often in the dorsal upper-arm fat, in the axillary and gluteal fat, in the stomach wall, in dorsal fat folds, and on the soles of the feet

The Three Types of DD

Type III, or the lipomatosis, nodular type, with intense pain in and around multiple lipomas, sometimes in the absence of general obesity; lipomas are approximately 0.5-4 cm, soft, and attached to the surrounding tissue (Histologically, these are not always encapsulated. Some have been classified as angiolipomas.)

Yes, I too have type two. I have been able to keep pain at a low roar, however, I can barely stand the fact that I have gone from a size 7 shoe size to a size 8 in right foot and a size 9 in the left one due to Dercum's issues. Ugh! Shoes aren't cheap, especially when you have to buy two pairs!