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

[Lizard2013]

Diagnosed last week by my local GP .... Amazing.... Generally Gp s in uk are not up to par. Very deffo practitioners of general medicine and NOT specialist in anything except bluffing and passing the buck....
So.... My Gp is superb!

Interestingly father  has a collection of sympto,s to include painful joints, lumps, bump, heart failure, diabetes, lymphatic draining problems and suchlike.... I was told there is a cluster of people in Yorkshire and Northeast with DD presumably due to spurious heritage link? Or possible external extraneous local factor as yet undiscovered.

I am 38. Relatively normal weight, lumpy, painfully pissed off and utterly incapable of sleep. I had a baby 18 months ago.... That's not the reason for lack of sleep.... I can't drop off.... Interestingly I see that pregnancy can boost this DD situation. Although I have noticed these previously unnamed bumps for some years.... Apart from the secondary symptoms which concern me somewhat.... I am more concerned (call me vain if you like) about the prospect of impending fat descending unwontedly upon my being.... Thrust here imminently through no fault of my own. .... The fact I have to follow a daft diet suitable for sparrows and rabbits....with my main fun (seared steak and red wine) but a dim and distant memory...... Anyway.... My advice. **** it. Get drunk, enjoy life, tell your man you love him.... Love your daughter even if she threw her dinner on the floor and poked you in the eye....  

[nellie93]

Hi, my name is Niamh, from Ireland. I am 20 years old and facing a huge battle. At the age of three I was diagnosed with a rare disease called Histiocytosis. Ten years later I was rediagnosed with Langerhans Cell Histiocytosis (LCH) which had invaded my cerebellum. My mobility has been hugely affected, causing me to go from, walking independently, to becoming wheelchair dependent. Join me and read my blog, as I document my life over the past seven years living with neurodegenerative LCH which changed me forever... http://*********.*********.com/

[Kattamaki]

Are you aware of the RAD diet? Thats Rare Adipose Disease. It was recomended by Dr.Herbst whom you surely know.

www.lipomadoc.org
www.dercumsresources.com
Also google RAD diet. My girlfriend with DD lost over 100 lbs in one year.
One feels so much better but the pain is the same, however one can cope better.

[Suziall]

I'm so pleased you've found a way to ease the pain!  I am, once again, trying to shed some weight in the hope this might help with pain levels.  I have the build of a typical Dercums woman - round with lots of lumps!  Although we're told the weight is part and parcel of the condition, I'm determined to try and prove otherwise!  Watch this space.....

[DeanDutton]

im a 43 yo male who has suffered with type 3 dercums disease for the past 20 years.
i have had 207 lumps removed so far and have many more.
up until 12 months ago i was in so much pain and taking so much morphine i didnt
know if i was coming or going until i had a spinal morphine pump fitted inside me.
i can say its the best thing iv done im pain free, i still have to have my lumps cut out
but i am pain free and have a much better standard of life now.
Regard
Dean.

[Suziall]

I've been seen by Professor Mortimer at St Georges in London.  He does recognise Dercums but was only able to offer me surgical excision of the most painful lipomas.
However, I have since been seen by Mr Devaraj in Exeter who seems well informed.  Again though, only surgery to relieve pain from the worst lipomas.  

Until they find a cause we're not going to get any more satisfaction then surgical excision.  There's a professor in Sweden doing some research but that's about it. Dr. Karen Herbst in the USA is also doing a certain amount of work, but she isn't funded so time is limited.

Not really what you wanted to hear, Ruffinn, but hey, at least we're still alive and kicking!