Aa
Aa
A
A
A
Close
Avatar universal

Dercum's Disease- Nodular lipomatosis type III

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
68 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Lucky you that Dr. Are able to minimize pain with lidocaine injections.
When I go to a Dr. Office I carry an F.Y.I. on dercums,
I have suffered over 3decades. Now I can't move my left arm or bend due to amount of lipomas on top of my left hip. I am in constant pain! Due to other health factors I can't even take an Aleve. Have a surgical appointment due to my pain. I'm in deep depression, lethargic and want to remain independent!
I can't even clean my apartment.
Helpful - 0
1 Comments
I have had DD type 3 since 2012.  I took lidocaine infusions for almost a year and it actually made me really ill.  I became nauseous, I would sweat so bad I was so embarrassed to leave the house.   It's almost 1 year since my last infusion,  those symptoms have dissipated.   I am 40 years old.  In 2014 my weight went up to 230 pounds.  I normal weight is approx 130 pounds.  I am down to 135 pounds now.   I stopped taking most of my medication and have tried natural remedies etc...I think the medication really played a toll on me.   I have over 100 lipomas over my body most are no bigger than 2" but they are little balls in my upper arms, thighs, rib cage (worst), along my spine and all over inside my tummy
Avatar universal
Hi jewels I am from the uk. I to have dercums disease, my pain specialist is a wonderful lady called Dr stoilova, she has introduced me to lidocaine infusions , for which without this treatment I would not be able to cope, there are some dangers to this treatment, but under the correct settings the benefits far outweigh the negatives, I would not hesitate. Hope this helps chris
Helpful - 0
Avatar universal
Yep, I suffer from the brain fog too...I just realized I didn't complete my "Thanks to the internet" sentence. -,I was able to find out about Dercums years ago and was pretty sure it was my dx. and as my symptoms progressed, I knew I had Dercums. I would love to be able to recover some of my dignity like so many others here understand just what I mean....
Helpful - 0
Avatar universal
I was wondering where you were able to find a dr. in Texas that knows about Dercums and was able to give you a diagnosis? I have been suffering with Dercums for a long time but like so many others I know better than to mention what I think/"know" I have. (Thanks to the internet) I also suffer with Fibromyalgia and a long (and growing) list of other "fun thieving, life altering, ailments". Sorry, can you tell I feel strongly about them. Oh btw, I have been a chronic pain patient for many years now and HATE having to poison my body every day just to survive. I have often wondered if that would be a better alternative as I also suffer with CFS and I want my life back sooooo bad.....I used to run circles around anyone within my circle of "life".... I may be tiny; but I was mighty!! (Yes mine is the one without obesity "so far" but I fear I will soon be bigger than the dang bed I spend entirely too much time "not sleeping" on. Please let me know if you have a dr. in Texas who can give me a "permission slip" to be sick....not crazy. [That goes for anyone who reads this that may know someone I can see in Texas about this horrible disease that is kicking my "whole body" ...I fear there soon will be no room left in my body for the important stuff....things that are vital to one's survival....things like "vital organs"....Thanks, and here's hoping for a cure!!! (Until then, some "good days" would be pretty special for us all....:) Sincerely, TinaInTexas
Helpful - 0
Avatar universal
Hi everyone.. I've been reading through to get some answers and similarities to my symptoms..and I see often mention on lymphatic drainage problems... What is that? The symptoms? How would I know if that's a prob I have and what kind of dr do you see for that? Also.. I always feel lately like I've been punched in the stomach...my abdomen inside just aches...sound right w dercums? If so why? And does it make sense that my lumps don't hurt to touch like a bruise but yet have pain in general in the areas they are ..like inside of me? Some areas of fat in general like hips tho hurt to touch or mostly the ones that are more rope like hurt..... I appreciate anyone's help in answering some of my long unanswered questions..thank you!
Helpful - 0
Avatar universal
I'm sorry... I forgot one more... Can lipomas form in Ur lip by chance? Like enlarged salivary glands?  My lower lip has all these hard little bumps under the skin at the wet line inside.. Tiny pea like ..my lower lip texture inside changed.. Gets kinda red ,vasculature changes, and my lip will get a Sting burning pain like my other lipomas.does anyone have changes in their lip??
Helpful - 0
Avatar universal
What's the difference. And how to truelly know the difference between dercums and all these other lipomatosis or neurofibroma syndromes etc out there?
Helpful - 0
Avatar universal
Hi serenity... How did they find lipomatosis in Ur spine? MRI? I can't seem to find a test that they show up on.. They all see thru the fat tissue..
Helpful - 0
Avatar universal
hi jewels, it's been a long time since we first spoke....I kind of lost the site.lol. A lots happened and changed in the past few yrs..I feel awful.. More frustrated than ever because not one dr of the hundred I went to...know a thing about dercums....they just say...ah..Ur a mom of 4..it's stress.. Or u look great..don't look like any things wrong w u... Or say lots of people have fatty lumps. They don't hurt ! . Symptoms have stockpiled..tho idk if they're all new dercums symptoms or more than one issue I have going on... I always had the doughy movable lumps on my belly.and may I add..none of my lumps ever protrude outwards to visually see...  Never hurt really to touch..but had random pain I. Their areas...or burning stabbing pain right before a new one emerged... Over time i got long hard rope like strings of fat under the skin in diff areas.. On or below my ribs.my inner thigh..and in my breast.breastbone and upper chest wall... Those are more small hard clusters of lumps... Does this all make sense? Diff types..and in diff areas? The past few months..they spread like wildfire..I have almost gum ball size hard ones on my lower back ..and upper butt..they don't hurt to touch..but I always have pain in that area inside.. Like a back labor ache.. And they feel like deep seated.. Is this dercums type lumps/issue? Does dercums cause Ur hips,leg ones etc to hurt? Recently...my hands turned grayish blue on 3diff random occasions.. Not reynauds.. As they weren't cold... Does anyone get this?  My other question is.. My insides always hurt.. I feel like I have pain I. My liver all the time.. My stomach is tender to touch. Sometimes my ribs hurt or in my chest when I breathe... A lot of neck n head pain,etc..tests come back ok. Funny thing is.. Where u can feel a lot of these lumps.. Large ones.. Even w a marker on it.. Kris, cat scans, and even a pet and ultrasound.. Gave never seen one lipoma! Why? What tests do so I can watch these things and know if they're growing inwards too deep? Is there anything to do to help dd or slow it down? People mention supplements, diets etc.. But what are they? I'm only 35. W 4wonderful children.my youngest is only 1... I've always been able to silently suffer thru what I was feeling..but it's started to wear me down, affects my personality, what I do or don't do.. I've always been so active and strong... Is this just a painful existence? OR do we need to worry about our life at jeopardy?..also, I live in  nj does anyone know of drs. Around here that are educated in dd? What kind do we see? A dermatologist?rheumatologist? Sorry for all the questions... I'm overwhelmed, scared, frustrated etc to say the least. Also, what's best..is liposuction good for it? And if we have a few removed...what does dr need to do or test?thnx for all listening to my long ramble... My minds full of questions... I appreciate it..
Helpful - 0
Avatar universal
nsilk, yours is closer to my experience. I have areas where lumps are there to be felt if... and have had a couple dozen larger ones removed with the largest requiring hospital admission so that will not happen. For the most the pain is there before the lumps appear, and the lumps are so small in the rib/chest area. They are becoming evident on bottom rib and side of chest.
Helpful - 0
1310035 tn?1305621642
Hi doc, I have MS, but i suspect i may also have Dercums due to the multiple painful lipomas i have and i keep getting new ones which pop up every few monts or so, all my docs just dont care and fob it off. Now a lipamatosis has been discovered in my L5 s1 and is making my life hell with walking etc and compressing my spinal cord. could this be related to the Dercums. please if you are still active on this site can you help me, I am seeing my neuro surgeon this Tuesday and need help convincing him its this and if you could emial me with some help i would be forever grateful. My email is shirley.***@****. Please I am desperate as i cannot even empty a dishwasher from the severe pain anymore.
Helpful - 0
1310035 tn?1305621642
Hi Heather I have MS, but I also think I have Dercums as well. I picked up a massive amount of weight in a short period of time, get lipomas at a rate of knots that are extremly painful and all the doctors just dismiss, and sometimes my skin is so sore to touch it isint funny.. I have just also found a lipamatosis on my L5 S1 spine area and am wondering scince it is a fatty growth if it is related. I have a large one also on my leg the size of my Hand.

Is it possible do you think? could I also have Dercums and if so what type. I have suspected for a while I do but here in South Africa there are no doctors who have even heard of it to my knowledge so there is no help
Helpful - 0
Avatar universal
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 :)
Helpful - 0
Avatar universal
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.  
Helpful - 0
Avatar universal
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 :)
Helpful - 0
Avatar universal
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!
Helpful - 0
Avatar universal
..... 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
Helpful - 0
Avatar universal
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....  
Helpful - 0
Avatar universal
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....  
Helpful - 0
Avatar universal
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/
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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.....
Helpful - 0
Avatar universal
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.

Helpful - 0
Avatar universal
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!
Helpful - 0
Have an Answer?

You are reading content posted in the Rare Diseases Community

Didn't find the answer you were looking for?
Ask a question
Popular Resources
New study links cell phones to slightly increased cancer risk. Should you be concerned?
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.