Dercum's Disease- Nodular lipomatosis type III

[Jhewels]

I have a extremily rare orphan disease called Dercum's Disease. Is there any doctor on this site familiar with this disease or has treated anyone with Drcum's? I have type III nodular lipomatosis. many doctors are not aware that the disease exists and patients are often treated poorly, and never diagnosed . It is extremily painful, the disease in a majority of patients causes disability. It is slowly progressive . the type of disease I have can occur in non-obese patients, or patients that are slightly overweight can become obese. there is no cure or treatment for this disease. any advanced treatment are happening in sweden, and UK. one is IV lidocaine therapy which non of the doctors I know use this treatment  even those it is considered the best treatment out so far. I guess I am looking for anyone who knows or has treated any patient or if they know of doctors in or around Boston,mass that treat Dercum's.
jhewels I hope I hear from someone

[ccal]

Hello everyone,

I have a few questions about dercum. I am male, have many lipomas on my body and my fat tissue on many places (chest,stomach,thighs) feels very crude, like a teddybear who is filled with tiny marbles, and also hurts. I asked a dermatology professor is this could be dercum and he simply said no. He didn't even take me serioulsy. I worry a lot about this. Unfortunately I don't think there are dercum experts in my country (Germany).
How can a person find out if she has dercum?
And what also really scares me is that I watched a video on youtube about dercum where Dr. Herbst also appeared in and she said that removing the lipomas doesn't work in dercum because this causes even more lipomas to grow back! Is this always the case when people have dercum?

The man in the video who had dercum was in the military and suddenly he got all these lipomas and Dr.Herbst said it was because of the hard training and the lactic acid and that people with dercum must not do exercise. But then I don't understand why did this man keep getting new lipomas even after leaving the military?

Do you do any sports or exercise? Does this really make the lipomas worse?

And do you know if there are any supplements or therapies which help against dercum? For example massage of the fat tissue or something like that or could this only make it worse?

[pele_2288]

Was answer ever given to the original question lol? Is there any doctors inNew England who specialize in Dercums? Also I have a very odd question of my own, does anyone experience a gas like feeling in or around these lumps? I certainly do and its disturbing. I also find eating a ketogenic diet helps as any carbohydrate causes them and everything to hurt more on me, does anyone else experience that?

[yooo89]

hi, my name's rachel and im 23. i'm curious about derkums. when i push down on certain areas on my body- upper arms, thighs, hips, lumbar area of back, and now on my chest i feel these round stuff that burn and and are very painful when i apply pressure, but they are not visible through the skin. i only feel them when i push on it which causes a lot of pain. i also get black and blue marks a lot for no reason. is derkums always visible through the skin or does this sound like some of the symptoms . thanks

[Darlene777]

I was diagnosed in 2010. I have had every pain therapy known out there. I had liposuction in May of 2011, and mt results were horrible. Since the lipo I have new nodes in my arms, thighs and hips. The lipo was done on my lower back. I am in constant pain, unable to sleep, and the bruising is bad. I am at a lost. I have seen so many doctors and they advise me there is nothing they can do. They are sorry, but just try to find a doctor who specializes with this disorder. I live in the Washington DC area, so if anyone can suggest a Dr, I would be so grateful. My quailty of life has taken a turn for the worse. I feel so helpless. Thanks for any assistance you could provide.

[Suziall]

So how is everyone getting on?  Is anyone any further forward?  I'm wondering if Dr Karen Herbst would consider a Skype appointment...

[jubilee537]

i wrote an email to dr. hearbst in april of this year.  will be sending her a synopsis of history dx, etc. and hope to have a phone consult within the next couple weeks for dr. hearbst to treat my wife (tam).  her husband john seems to be a very nice fellow and is the one setting up the consult. he states she is super busy and no doubt because after all my emails, and phone contacts i have found nobody to help tam. tam can hardly walk to bathroom by herselft let alone anything else.  she is 48 and does not want to live with her pain.  i am hoping dr. hearbst can and will be able to something to help her. our funds are limited.  i was glad to see dr. hearbst was able to help you some.   jubilee537