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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
Avatar universal
Hi, I have Dercum's Disease as well, but mine is type II I think it is. The type where you have diffuse mutated Dercums fat cells with the occasional lipoma. I've spoken at great length with the two doctors in Sweden who performed the most recent study and together we set up an information website. If you'd be interested in checking it out, it's at www.DercumsDisease.com.
Although I'm not a doctor, I've been dealing with this disease for the past five years, I've met a great deal of other patients dealing with the disease, and I've spoken with most of the doctors who have researched the disease. I'd be more than happy to help you in any way that I can, if you have questions or if you just want to talk to someone who understands what you're going through and can sympathize.
Also, I live in the US and I've had lidocaine infusion treatments before, so they aren't completely unheard of here. I honestly found it quite helpful in trying to manage the pain, but just to make sure you fully understand, it won't do anything to help control or reverse the effects of the disease. (Sorry if I'm repeating stuff you already know.) If you'd like my help in trying to track down someone who might be able to help you with that, I'd be more than happy to.
Anyway, feel free to email me at HLawver AT gmail *******. I hope I can be of some help to you. Good luck!

- Heather
Avatar universal
I have what me and drs think is dercums too .. lumps/ lipomas popping out everywhere and lots of pain although not all are round lumos some are long ropelike hardness of fat tissue and dont necessarily hurt to touch but cause general pain in that area... also some clusters of tiny lumps  randomly now in chest area or belly does this sound familiar?
Nicole
Avatar universal
yes that does sound familiar. the one thing with dercums if you have clusters of them and they hurt most likely you have dercums. if you need any information or if your doctor needs help in treating this disease let me know and I will help you!

Thanks and sorry if you have this but at least you know what is causing the pain.
Jhewels!
Avatar universal
I have been searching on-line for any reason that I have these subcutaneous lumps/nodules that are extremely painful.  Over the years I have developed them over most parts of my body except the front of my thighs and my forearms.  I have been diagnosed with Fibromylagia. Lupus and Sjogren's.  When I complained to my Rheumatologist about the lumps he shrugged his shoulders and just said, so, you have lumps that hurt!

I live in Suffolk County, New York, my zip - 11704 and I think I need to find a different Rheumatologist  that would investigate more thoroughly.

Any recommendations?
Avatar universal
I have been searching on-line for any reason that I have these subcutaneous lumps/nodules that are extremely painful.  Over the years I have developed them over most parts of my body except the front of my thighs and my forearms.  I have been diagnosed with Fibromylagia. Lupus and Sjogren's.  When I complained to my Rheumatologist about the lumps he shrugged his shoulders and just said, so, you have lumps that hurt!

I live in Suffolk County, New York, my zip - 11704 and I think I need to find a different Rheumatologist  that would investigate more thoroughly.

Any recommendations?
Avatar universal
MEDICAL PROFESSIONAL
Hi,
How are you? Lidocaine given intravenously may give total pain relief for some days. However, repeated administration is not recommended because of its side effect.
Operation for isolated painful lipomas causing numbness and tingling brings relief while localized pain may sometimes be treated with cortisone injection. It is important that monotonous/ static work and physical and psychological stress are avoided. The article by Drs Brorson and Faghe published in the The Journal of the Swedish Medical Association may be helpful ( ref:http://dercums_data.tripod.com/brorson.html). Take care and best regards.
Avatar universal
I wanted to respond to Dr. Santos, regarding the "side effect" she mentioned about the repeated intravenous lidocaine infusions. I'd like to know what side effects you're referring to.
Also, regarding the cortisone injections, I wanted to mention that it's extremely important that people consult the latest research regarding Dercum's Disease before they inject cortisone or use any other steroid hormones! A lot of the latest research has indicated that the use of steroids in patients with Dercum's Disease, even when used locally, can actually cause the growth rate of the mutated fat cells to explode, suddenly leading to the faster development of diffuse mutated fatty tissue, as well as an increase in the formation of painful fatty lipomas. So please, before considering the use of steroids in any way whatsoever, please have your doctor do a complete check in PubMed for the latest articles. Yes, the Brorson Fagher article is a great resource, but it's still over ten years old. But even they talk about lidocaine infusions as being beneficial under the right circumstances, and if I remember correctly, warn against the use of steroids.
Avatar universal
MEDICAL PROFESSIONAL
Hi,
How are you? First of all, I commend you for your active role on The Dercum Society and the website. I am not an expert on this rare condition. But like you, I am here trying to help. I read about the article of Drs Brorson and Fagher, and appreciated it despite being more than a decade old. Because of its wealth of information and simplicity, I wanted to share it to others who may also want to understand Dercum's Disease more.  I also know that intravenous lidocaine injections or infusions are usually indicated for the treatment of ventricular tachycardia  and requires constant ECG and blood pressure monitoring. Like any other medicines, it can also have possible side effects which are usually dose-related and caused by rapid absorption, from  hypersensitivity, or diminished tolerance of the patient. Systemic reactions including CNS manifestations (paresthesia, confusion, dizziness, drowsiness,etc); cardiovascular ( bradycardia, hypotension and cardiovascular collapse which may lead to cardiac arrest) and allergic reactions can be expected. Also, lidocaine should be used with caution in patients with bradycardia, those with first or second degree heart block, and severe liver or renal disease. Cortisone injection may be used sometimes because of its effectiveness to some but not necessarily mean the choice of management.  It is always recommended (and due to limitations of the internet) that patients seek their primary physicians to discuss the best management plan suited for them. Take care and do keep us posted.
Avatar universal
Thank you very much for writing back in such detail. My point in asking about the lidocaine is that, of course every medication administered is going to have side effects. My concern was, the way you first mentioned lidocaine sounded so disparaging. I was concerned that without giving further detail about your concerns about lidocaine, it might sound to an average person like taking lidocaine under any circumstances could be potentially lethal.
The fact is, it's not. In most cases, under the proper monitoring, lidocaine can be quite useful and helpful for people with Dercum's Disease. And not to mention, it can be perfectly safe. So my concern was, the way your first post was written, I was worried that some people might not even ask their doctor about it at all because of how serious your post sounded.
Now that you've very kindly listed the concerns you had, my hope is that now people can take that information to their doctors and consider whether lidocaine infusions might be right for them, with all the proper monitoring and everything.

I've personally had lidocaine infusions before; I used to have them once a month under the care and supervision of an anesthesiologist/pain management specialist. I don't have any of the potential complicating conditions you listed and the very first infusion was done while I was admitted to the hospital. After that, I would have the infusions at the anesthesiologist's office when I went in once a month to get my pain medication prescriptions. The infusion was quite simple and proved to be quite helpful. The lidocaine would be infused over a 30 to 40 minute period, with my blood pressure monitored every ten minutes before, during, and after the infusion.
The only side effects I encountered was feeling a bit, well, drunk for a little while afterward. Of course, sometimes in the beginning some side effects can be worse while you're trying to figure out your body's limit for how much lidocaine can be infused at one time and the proper speed at which to infuse it. Early on, I did have an incident where I started to "snow", where it's almost like you're mildly sedated for surgery. But that was easily corrected by just turning off the infusion, continuing to monitor my blood pressure, and waiting a while to make sure everything was alright. Soon enough, I was fine.

The nice thing for me about the lidocaine infusion, is that it gave me a break from the pain. Sure, like you said, that break from the pain was temporary, but it was still enormously important to me.
Because of the Dercum's Disease, I can't remember a single day in my entire life where I haven't felt some sort of pain. That's a lot of stress for the body to handle and has led to a lot of complicating problems just from the sheer level of inflammation my body has had to deal with. Even though, as you said, the pain relief from the lidocaine infusion is rather short-lived - I only saw any sort of direct pain-relieving benefit for a day or two - those were the only days in my entire life where I was at all pain free. So for me, even just a day without pain made it worthwhile.
On top of just the relief of being able to live for a day or two without pain, I did start to see a cumulative effect from having these infusions done on a regular basis. I know this doesn't sound very scientific, but after having so much pain for so long, it's almost like my body, my mind, and my soul were getting buried in a barrage of white noise. It was like my nerves had been screaming at me so loudly for so long, that I couldn't hear anything else but pain, pain, pain. Everything else was just getting lost in this sensory overload. And because of that, I was always just trying to play catch up. I was always just trying to claw my way out from under this mountain of pain, both past and present.

Having those lidocaine infusions was almost a way to just reset my nerves. It calmed everything down just long enough for my body to kind of clear out all the pain that had come before and just start over. Because of that, I no longer felt like I was trying to claw my way out from under a mountain of pain. I could finally get ahead of the pain, rather than trying to constantly catch up from behind.

I know that might not make much sense, but it made enough of a difference that after having these lidocaine infusions once a month for a few months, it allowed my doctor to lower my narcotic dosage. When dealing with chronic pain, anything that can be done to lower narcotic dosage is potentially life-saving. Anyone that's suffering through chronic pain, anyone who's facing a lifetime of narcotic use to treat that pain, anything such a person can do to keep that narcotic dose as low as possible is worthwhile. So even though the pain relief from the lidocaine infusion itself was relatively short, having it done regularly did produce positive long-term results in my case. And I've read multiple case studies published in respected medical journals to know that I'm not alone; lots of patients suffering from Dercum's Disease have seen documented, proven improvement from similar treatment plans involving regular lidocaine infusions.

So all I was trying to say was, yes, like any other medication, lidocaine infusions will have side effects and complications. But I wanted to make sure that those complications and side effects were properly explained, rather than just left hanging. Because when someone who doesn't understand medical terminology hears that something *might* be dangerous, or *might* have side effects, that can often discourage them from ever even asking their doctor about it. "Might" suddenly carries such weight, and when the "maybes" aren't properly explained, things can end up sounding so much more definite and so much scarier than they really are.

The reality is, someone who's reading this might not even have any of the complicating factors that you listed. They might be a perfect candidate for lidocaine infusions, or they might not, but they'll never know if they don't ask their doctors and find out for themselves. I just wanted to make sure that the information was out there, so that people who are suffering like I was would have the information necessary to take it to their doctor and perhaps get some help from it like I did.

(Had to split this in half, since it went over the character limit...)
Avatar universal
(Now for the second half of my post... Sorry it got so long! So much to say.) :)

As for Dr. Brorson and Dr Fagher's article, I didn't mean to disparage their work in any way whatsoever. I owe a LOT to Dr. Brorson especially, since he was instrumental in the creation of my website, which you mentioned. Even though I wrote all of the text on the website myself, it was all based on Dr. Brorson's work; I was just trying to translate the medical-speak into layman's terms. And before I ever published any of it, he went through everything I wrote, line by line, to make sure it was all medically and scientifically accurate. So without him, without his research, without his help, my website wouldn't exist today.
But the fact still remains that yes, his article is getting older. More case studies, surveys, and research has been done since, and because of that, our understanding of Dercum's Disease has grown. One piece of that understanding involves the adverse effects that the use of steroids has on the mutated fat cells inherent to Dercum's Disease. Which is why, when you advocated the use of cortisone, I wanted to bring that up. So much of the recent research points to steroids increasing the rate of cellular growth and mutation, and thus, an increase in the exponential growth rate of diffuse painful fatty tissue, as well as the formation of painful fatty lipomas. That's a huge risk, since that's the very root of the problem inherent in Dercum's Disease. After all, what's the point of using cortisone to treat the pain, when all the recent research points to the idea that it could very well end up making the root of that pain worse?

I've personally seen in my own life the harm that can be caused when using steroids of any form in a person suffering from Dercum's Disease. A few years ago I had my tonsils out and after the surgery, my throat started to swell to such a point I was having difficulty breathing. My doctor tried everything he could, but nothing was working and my breathing was getting worse. He had no other choice but to administer steroids so that I could breathe, but he administered it with the full understanding of the risks that steroids cause to patients with Dercums Disease. Because he understood that, he used as small of a dose as possible to allow me to breathe.
But even still, I've suffered years of set backs because of it. Sure, he had no other choice, he had to use steroids. I understand that and I don't blame him at all. But the reality is, steroids caused a whole host of problems, from an increase in the growth rate of my diffuse mutated fat, as well as a huge exponential increase in the growth and development of painful lipomas. I've never had much of a problem with lipomas; up until that point, I was dealing with the type of Dercums Disease where it's mostly just the diffuse painful fatty tissue. But ever since my doctor administered those steroids, suddenly I'm finding lipomas everywhere.

So like I said in the beginning, any medication is going to have risks. Any surgery is going to have risks. Anything you do in life, medical or otherwise, has risks. But it's important to understand those risks and weigh your actions accordingly. After my own experience, after all the research I've read, after everything I've seen, using any form of steroids on a patient with Dercum's Disease is an unacceptable risk, in my opinion. Unless, of course, you have no other option, as my doctor did. But even still, my doctor altered the typical indicated dosage of steroids in that instance, because he knew of the risks and altered his plan accordingly, in order to keep me safe.

It's all about weighing risk and benefit. So please, anything anyone reads on this forum or anywhere online, don't take our word as gospel. Don't take anyone's word as absolute gospel. And if anyone claims to be an absolute, end-all-be-all expert, question their motives. No one has absolute authority on anything, because no one person can know everything there is to know. Make sure that whatever you read, before you decide on anything, make sure that your doctor looks for the most recent research on Dercum's Disease available through PubMed (your doctor will know what that is if you're unfamiliar with it.) Make sure you talk to as many people as possible to gain as much information as possible. Between you and your doctor, weigh all the risks and benefits, then decide for yourself. Only you know your own body. My experience may be totally different from yours, Dr. Santos' experience may be totally different from yours. You know yourself best. Your doctor knows you better than we do. All you can do is take as much information as possible, share it with your doctor, encourage your doctor to do research of their own, and then proceed carefully, cautiously, prayerfully, and intelligently. That's all anyone can do, all anyone can ask for. Especially when dealing with a condition as rare, confusing, and complicated as Dercum's Disease.
Avatar universal
Hello everyone.. I wrote here in the past and was wondering..I have lipomas /lumps all over now all different shapes and sizes...clusters of small hard pealike ones,, larger doughy moveable ones..along w/ hard ropelike fatty areas .. along with sooo many other issues? symptoms that i wonder if its all ONE BIG ISSUE or more than one thing going on at once....hard to say...each Dr. has its own theory..and NONE know about Dercums.! So.... my questions are.... 1) would it make sense if some pains and symptoms started before ever feeling lumps anywhere for it to be dercums? 2).. what if i have tons of pain constantly but not necessarily to touch the lumps/lipomas? would that still make sense dercums? some lipomas do hurt to touch but mostly i just get pain inthe "area" i have them...ex.. have tons on my ribs and abdomen.. but only a few hurt to touch (also..they dont stick out..cant see them but can feel them .. grow inward ) but i get alot of pain it seems INSIDE my abdomen or feel like the pain comes from inside the ribs.. does that make sense.. does anyone seem to have enlarged lymph nodes with this ? or any changes or lumps in their breasts? lastly..what imaging out there actually shows the lipomas? they seem to blend with reg. fatty tissues... havent shown up on ultrasounds or mri yet...?thanks . sorry to bombard you all with so many questions.. it seems people with this are the only ones with any info on this disease. thanks .. be well! nicole
1457883 tn?1285564282
Looking for a Dr to discuss the possibility of dercums disease myself. Im in upstate New York but willing to travel if need be. My acupuncturist was the one who mentioned that I had numerous lipomas on my back, hip and leg and when I started researching lipomas this really seems to fit me perfectly. Any help is really appreciated.
Thanks.
:)
Avatar universal
I'm in the UK and wish the medical fraternity had a better understanding of Dercums.  I noe have hundreds of lumps - from neck to knees and everywhere in between!  The pain some days is unbearable.  Most times I'm able to deal with it but sometimes it just gets a bit too much.  Where oh where do we go for understanding and treatment?
Avatar universal
If anyone out there knows of a doctor in the UK who knows anything about Dercums, please let me know!
369533 tn?1207588462
hi i live in the uk i have been diagnosed with dercums/fibro docs didnt know what the lumps was until i brought info of the net ,i have been threw a lot of pain and stress trying to find out about the condition my rhmotoligist suggested taking amertrypaline which has a nerve blocker in it this as realy helped me ,
Avatar universal
We seem to be very much on our own here in the UK.  My doctor has at last taken it on board that I do have Dercums and, like yours, has prescribed amytryptolene for the pain at night.  I have co-codamol for daytime pain, together with ibuprofen.  However, some days nothing touches the pain.  I'm told to loose weight - ha! ha! they should try this with dercums!!  I get so far but not far enough.  
Interesting reading above in this thread.  About two years ago I had a steroid injection in my knee - I had a 12 hour day on my feet looming and suffer arthritic pain in the knees and hips.  After that time, the lumps seem to have really increased in number and size.  The rheumatology department have said they will consider surgically removing any lumps that cause severe pain - where shall we start?  Again, I've had some removed in the past for them to only re-appear, larger and more of them!
I am a Reiki Master and give myself healing.  This seems to have more effect than anything!  I am still able to play golf - in spite of the pain.  Although some days it's just too bad for me to get around the course.  So I go home, self-heal with reiki again, take some analgesics and carry on.  I soak in an aromatherapy bath every night.  That followed by Reiki helps me get some sleep.
Guess we just have to keep on pressing for some research to be done.
Avatar universal
i don't know where to begin....when i was 39 i' m 51 now i noticed these small lumps in my arms like pea size some are bigger,i also have them in the legs stomach, thighs,upper back also in my scalp...well almost everywhere.i have read a lot about dercums ,but when i asked my skin dr. he said oh i have those to.i hurt all over an was told i had fibromyalgia.but what i was wondering was do any people with this has been told they have a fatty liver? i had a liver biopsy done about 2 months ago an it showed i had over 90% fatty liver with fibrosis.dr. told me to lose wieght but it's been really hard to lose it.i live in ok an no one seems to know much about dercums or if i say i think i might have it they just brush it off.is there anyone who knows of a dr. here in oklahoma that treats derdums disease? iv'e been on ultram for pain but it don't help much,i also have other health issues.im not much of a writer so i hope i wrote this ok.if you could give me some advice i sure would appreciate it.
Avatar universal
I didn't think fibromyalgia gave you lumps!?  Sounds very much like Dercums.  Sadly, we all seem to have the same trouble - getting the medical fraternity to recognise it.  Weight is an issue that appears to come with the condition - although some sufferers don't have the gain that most do.  There doesn't seem to have been much in the way of research done since it was first discovered!  OK I may be wrong there but I've been unable to find much recent work.
It seems we're expected to grin and bear it - thank goodness I can at least get some relief with the Reiki.  Have any of you others tried any complementary therapies?  If so, what, and have they helped?
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!!!!!!!!!!!!!
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
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
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  
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.  
369533 tn?1207588462
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
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