Aa
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
Cancel
68 Answers
Page 4 of 4
Avatar universal
as a husband who dearly loves his wife i cry at times because i am unable to find a doctor anywhere that treats fibro as a serious medical condition.  plus my wife has an ever increasing amount of lumps (various sizes, small, rope like. and large)  almost everywhere on her body.  all seem to hurting very, very bad.  she vomits numorous times daily because of severe head pain.  in florida she can't get pain meds and i have no luck in finding a dr. for her that simply writes it off.  i dont have much but would be willing to sell house and give up anything plus go almost anywhere to get her some relief.    she has to be a tough lady to put up these problems.   as a 100percent permantly disabled veteran i ask anyone for help in seeking a doctor that will not write her off or think that she is simply a drug seeker.   i will pray for all those having same difficulties.  please help!!!!!!!!!!!!!
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
I wish you all the luck in finding some help for your wife.  It's very sad that nobody seems to be doing any researcg into this for us.  I'm sure we all know what your wife is going through - but it's hard for the spouse to deal with as well.  

All the best,
Suzi
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
thanks for the response suzi.   should u here of a dr that has dx anyone withe dercums plus treated them as an individual i would surely appreciate it.   somehow i need to find help for my wife.  she hardly has any life anymore.   she does look forward to the next day at all.  but does enjoy when i read scripture to her because we both know the lord is the true healer, but that does always mean he will physically heal but can and will heal the heart and mind at his time not neccessarly our time.   all r in my prayers.  thanks again
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
I understand completely how difficult it is for you to watch your wife endure this.  Have you considered any complementary therapies?  As a Reiki Master, I'm fully aware that all healing comes from the one Source.  I do self-heal regularly and find this helpful.  Some aromatherapy oils may be useful in giving some respite.  I don't know how many/how big the lumps are that your wife has, but I'm pretty much covered from neck to knees.  Probably the worst area for me is the arms.  One wrist just doesn't resemble a wrist any more!  It hurts if I knock my arms against anything, or even rest my elbows on a surface.  It appears that Dercums eventually affects all our joints as well.  Oh joy!
If I can be of any more help/support, please contact me again.
Suzi  
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
at times tam enjoys her variety of music to let escape the moment of her pain.   i have also at times been able to do biofeedback to help.  this also determines just how bad her pain is..becoming highly anxious because of the pain the only thing i have been successful at attemping was simply breathing excercises,  but even though these stratagies help at times nothing seems to help when the pain is so severe.  i would venture to say she approx 100 or better lumps. coupled with massive head pain.  everytime she becomes nausious and vomits or dry heaves her head pain goes up higher making it almost impossible for her to concentrate on any strategies.  thank you for your thoughts.  u will be in my prayers for some relief also.   should u ever find a doctor that has treated dercums and fybromalysia please let me know.  an she is i am almost at my wits end in finding help for her.  
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
369533 tn?1207592062
as suzie says in past post, i think a lot of my pain is or was coursed by not knowing what the lumps was ,docters not knowing and it all plays with your mind ,
wasnt until i got some ansews and medication did i get my life back on track i think a lot of the pain coursed was my mind playing trickes with me ,
thanx david
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
I think the main thing is, we need to stay positive.  I know that days when the pain is particularly bad this isn't easy but if we're positive then there's hope.

Anyway, it's now Christmas Eve, so I hope everyone has a really lovely Christmas, and here's to the New Year.  Who knows?  Maybe in 2011 someone may have a breakthrough for us!
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Hi, My Name is Carol and I believe I also have Dercums. For almost 10 years I have been dealing with very painful fatty lipomas that started out as small pea-sized lumps in my forearms, now my body is covered with them, in various sizes and shapes. They have surrounded my elbows to the point my hands fall asleep when my elbows are bent for any length of time. Every Doctor I have come in contact with and inquire about these lipomas... THEY BLOW ME OFF!!!  Quality of life? What Quality? Unless they mean it comes with debilataing pain! Pain, very bad pain is my life!  Its been so many years I'm used to the daily pain ( except for the really heavy duty stuff. ) like I said its a part of my life. I live in Houston, TX. Where and to whom do I go for HELP!   Reading what ya'all have written (halla lou ya) sounds like what I have, now all I need is a Doctor to comfirm that it is in fact Dercums Disease. Please, anyone can you help me? "Thank You" in advance. Ya'all be sweet.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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!!
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
  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!!!
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
So how is everyone getting on?  Is anyone any further forward?  I'm wondering if Dr Karen Herbst would consider a Skype appointment...
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.



Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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?
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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?
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
PS: How do you find out what kind of dercum you have? Like nodular and so on?
Do they take a fat biopsy? I also thought about simply getting a biopsy taken from an area which has this weird crude fat but I don't know if this would be helpful.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
I have dercum's disease,but I got it from super antibiotics. While waiting in a waiting room to see my specialist, a biker friend of mine came in helped by two nurses. He had huge lipomas all over the arms neck body etc. they sat him down next to me. He told me that he had been selling his body to research and the drug they put into him (you probably guessed it), yes! "Super Antibiotics."
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
I was diagnosed yesterday with Dercums Disease.  Does anyone know of a specialist in the UK?
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Hi Teenyp

I'm in the UK too and am sure I have Dercums.  How did you finally get diagnosed ?  I am waiting for a biopsy.  Mandi
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
I am 60 yo white male; I have been in general, very good health and extremely active all my life, along with very good diet and regular exercise. In January 2001 I broke several bones, developed very bad low back pain, had MRI's, DEXA Scans, Lab work, etc, and was diagnosed w/osteoporosis, fibromyalgia, osteoarthritis, etc. I was put on Actonel, xanax for sleep, and because I had several accidents that led to progressively worse pain over the course of 10 years, I am now on morphine .  I have also been diagnosed with Dercum's Disease.  I tried marijuana in a desperate desire to alleviate some pain, cut back on the morphine & to just feel better and happier in general. I really do believe that used daily but in moderation, pot truly helped me but quality marijuana and people I am comfortable getting it from is not easily done here in Abilene, Texas. Plus, young people who have it are afraid to sell it to a 60 year old man with short hair and who they say looks like a cop. I have little income but can pay for what I get; I don't use much; maybe an ounce a month or more. I have heard of compassionate growers who genuinely care about people like me and who want to help. When I smoke I am truly able to work, and I WANT TO WORK, but it is very difficult for me to get marijuana. Do YOU know of anyone who would be willing to help me at any level? My pain is out of control at times even with morphine, and I do not sleep well of course but there is something almost miraculous about how marijuana works on me. It MOTIVATES me & makes me WANT to be active, to work, to be happy and to help others, which I do. It helps me relax, destress & have quality sleep and to even cut back on other drugs. Thank you! Commtech AT nts-online DOT net  
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Dear Tex,
Although I do not take marijuanna myself, I also have had DD for very many years, Type II. Most likely you already are well informed, but in case not, let me give you some links:
www.lipomadoc.org
www.dercumsresources.com
On facebook you will find the largest (over 300) support group for our illness called Dercums Research. I know there are Americans, also from Texas, in that group. If you do not care to join yourself, let me know. I could ask for you. Best wishes
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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!
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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.

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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.....
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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/
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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....  
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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....  
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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!
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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 :)
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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.  
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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 :)
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
1310035 tn?1305625242
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
1310035 tn?1305625242
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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..
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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..
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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?
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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??
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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!
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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....
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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.
Comment
Cancel
Comment
Avatar universal
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
Comment
Cancel
Avatar universal
Comment
Comment
Comment
Post Comment
Your Answer
Avatar universal
Answer
Do you know how to answer? Tap here to leave your answer...
Answer
Answer
Post Answer
A
A
Looking for a Doctor?
Shop for health care like an expert. Find the best doctors based on reviews from patients like you.
Rare Diseases Community Resources