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Dercum's Disease- Nodular lipomatosis type III
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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
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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
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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
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Avatar_f_tn
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!
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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 (fibromyalgia). 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?
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Avatar_f_tn
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 (fibromyalgia). 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?
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Avatar_dr_f_tn
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.
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Avatar_f_tn
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.
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Avatar_dr_f_tn
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.
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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...)
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(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.
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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
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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.
:)
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Avatar_f_tn
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?
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If anyone out there knows of a doctor in the UK who knows anything about Dercums, please let me know!
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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 ,
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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.
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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.
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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?
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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!!!!!!!!!!!!!
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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
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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
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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  
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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.  
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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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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!
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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.
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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!!
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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
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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
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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
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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
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  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!!!
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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
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So how is everyone getting on?  Is anyone any further forward?  I'm wondering if Dr Karen Herbst would consider a Skype appointment...
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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.



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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
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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?
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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?
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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.
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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."
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I was diagnosed yesterday with Dercums Disease.  Does anyone know of a specialist in the UK?
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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
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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  
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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
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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!
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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.

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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.....
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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.
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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/
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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....  
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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....  
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..... 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
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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!
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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 :)
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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.  
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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 :)
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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
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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.
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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.
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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..
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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..
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What's the difference. And how to truelly know the difference between dercums and all these other lipomatosis or neurofibroma syndromes etc out there?
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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??
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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!
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