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

[stacie65]

  I have suffered with Dercum's disease for 14 years right after my last child was born. I had all kinds of weird symptoms.I have gout, fatty liver disease, irregular heart beat, headaches, get overwhelmed very easily due to exhaustion. Not just being tired and able to push thru, but exhausted! Swelling on my back and hips due to  my lymph  system not working and major memory problems. To name a few plus the ever present stinging and horrible pain from lumps all over my body.Two years ago I finally diagnosed myself and went to see Dr. Karen Herbst. She has me on l-carnitine which has helped alot with energy, compression hose which again help alot, and I see a lymphatic dr. for manual drainage nothing has gone away but it is better. I have to work very hard just to do a third of what I used to. I can't walk for more than an hour or two and then I'm done it's so very discouraging I am only 46 and have lots I want to do! I don't see how it will ever be possible. What a frustrating and painful thing!!!

[deeinct]

Hi i have been recently diagnosis with dercums by a dr in CA her name is Dr Karen Herbst and you can find her information on her website lipoma.org.  i live in CT and i flew out to see her.  i have been suffering for 2 years with no one to help and she has got me on a treatment plan.  i am doing manual lymphatic drainage with a licensed therapist along with wear compression garments, have you heard of this helping?

thanks

[Linda11]

Hi, I also live in upstate New York, Rockland County.  I was wondering if you ever found a doctor to treat you for Dercum's Disease?  Thanks.  Linda

[Suziall]

I hope you find some relief from the liposuction.  Do let me know how it goes.  My own doctor tried to refer me to the immunoplogy department in our local hospital but they replied saying they didn't think they could do anything really to help.  He then though about bariatric surgery - the thought here being that if total weight was reduced it would relieve pressure etc. on the lumps.  They also said they didn't think it would help so were unwilling to see me.

You don't say where you are - are you in the Uk, States..?  It would seem some countries think differently about their approach to Dercums.

Still hoping,
Suzi

[prettylittledreamer257]

Hi there

I have just been diagnosed with Dercums. I have been offered pain relief and referral to a plastic surgeon to see if Liposuction to remove some of the lumps would help reduce the pain.

The day I found out what i had, i was so happy that they finally knew what it was I had wrong with me. I had been going back and forward to the doctors for a long time with various symptoms and they couldn't find anything specific wrong with me. Then reality set in and the thought of being in this pain and being so tired for the rest of my life is not something that i am looking forward to

[Suziall]

Oh how I know about the pins and needles in the hands - especially at night.  I think it's caused by the lumps around the elbows resting on nerves.

I'm still no further forward with my own Dercums.  My GP is a little more understanding now but, again, no treatment apart from analgesics.

Dear Dr Dercum, when he invented the disease he should have invented the cure as well!!