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

[Suziall]

Update on the weight loss.  2.5 stones!  Yes, two and a half stones lost - so far!  Pain still there, lumps still there, but the weight is becoming less of a health issue :)

[ha124]

This is excellent news!  Go you!!! It's really good that you are feeling a bit better about it and that you have started to take control of the situation.  I absolutely agree with you that where we can help ourselves we should.  

I have an appt with dr mortimor next week.  I expect him to diagnose me and that's about it.  I've made an appt with herbst as well in June.  It'll cost a bomb to fly there etc but I think it will be worth it as she has seen so many people with this disease and will at least be able to give some guidance.  

I had botox injections and then lots of neurological auto immune problems following this.  A few months later I had two lumps which at the time I didn't even know were lipomas.  I then did an intense workout on my legs with weights and then had bilateral lipomas around my inner knee caps.  Docs thought I had pes anserine and so injected me with cortisol.  It wasn't until they scanned my knees that they realised it was fat after injections hadn't worked.  Now they are forming at an alarming rate.  Therefore, there must be a link to cortisone and then a link to cortisol???  I definitely think this is in some way either immune/hormonal/adrenal related.  Let's face it, everything is linked to your adrenal glands.  

[Suziall]

Have to agree - live each day as it comes.  However, when it comes to the diet - you're all going to shoot me down for this..... A few weeks ago I came out of a meditation knowing I could actually do something about the weight.  Let's face, we'll either suffer a lump in the wrong place or the fat will get us in the end.  Anyway, I had this very strong message telling me we've been "Conditioned" into accepting that obesity comes as part of this horrible Dercum's.  What a wonderful (subliminal) excuse to indulge in whatever we want!  Sure, we tell others we eat a well balanced diet.  Well, we do.  We just supplement it somewhat.  You really HAVE to be HONEST with yourself on this matter.  Nine weeks ago I trundled off to Slimming World.  I told the whole group about Dercums and that I wanted to prove them all wrong.  The support I'm getting is unbelievable.  So far I've lost one and a half stones - yes, that's right 1.5 stones!  Now when it reaches the 3 stone loss I intend to write to all the doctors I've seen over the last 12 months and give them the copy from my weight-loss book.  

I know you're all going to throw your hands up in the air, but I really do believe we can help ourselves a little here.  I've had Dercum's for more than 40 years.  I have, literally, hundreds of alien lumps.  I know I'm not going to get rid of these and the pain is still going to be there, BUT I also know if I can shift some weight then I'll at least be able to enjoy the rest of my life, being able to wear "Normal" clothes and also be able to run around with my grandchildren.  I've started playing golf again - amazingly I can now walk around the course - about 4 miles - and not suffer too much.

So come on, let's all be positive and see what we can really achieve :)

[ha124]

Hi, I am in the UK and am not getting diagnosed.  I'm 33 and I feel exactly the same as you.  It's the thought of the future, not right now that drives me insane.  Where in the UK are you?  I'm in Manchester.  Your message made me laugh!

[Lizard2013]

..... Go back to work..... Doing nothing is not helping.

I should say I have a previously existing health problem whereupon I was given 6 months and 12 years later I am here.. DD is not going to rule my life now.

Do not let it rule yours.... X

[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....