Dercum's Disease

Could someone tell me if there are any reports of the prognosis of Dercums disease or lipomatosis dolorosa? This illness belongs to the rare diseases, I have fine combed the internet in hopes of finding an answer to my question. Should any person suffering with this please notify me. Thank you, Kattamaki

[Dr Santos]

Hi,
Adiposis dolorosa or Dercum Disease, according to the National Organization of Rare Diseases (NORD) is a rare disorder in which there are fatty deposits which apply pressure to the nerves, resulting in weakness and pain. This syndrome consists of 4 cardinal symptoms: (1) multiple, painful, fatty masses; (2) generalized obesity, usually in menopausal age; (3) asthenia, weakness, and fatigability; and (4) mental disturbances, including emotional instability, depression, epilepsy, confusion, and dementia. The prognosis is that the disease is chronic and progressive. And there are a lot of factors to be considered in quantifying the exact prognosis. This link may be helpful: http://www.mdjunction.com/dercums-disease/articles/dercums-disease-study
Take care and best regards.

[Kattamaki]

Dear Dr.Santos,                                           22.March 2010   Life-span
Thank you for your answer. My question however, was "What is the prognosis of Dercum's disease?", in other words, are there any known cases of death by Dercums !! I am aware of all the information on the internet, I have also founded a self support group for this illness.
Thank you for your assistance,

[Dr Santos]

Hi,
How are you? As I have mentioned the disease is chronic and progressive. So this means prognosis  depends on the medical conditions present or co-morbidities. If there is, the prognosis is shorter. The problem arises as well when these fatty deposits put pressure on major nerves and therefore can lead to fatal conditions and eventually death. Because of this reason, it is difficult to give the exact age or years of life expectancy.  This is also one reason why it is difficult to find literature regarding the exact prognosis. Further studies are needed. Wishing you all the best.

[Kattamaki]

Dear Dr. Santos,                      26.3.2010
Thank you for your mail. I now have a good picture of what to expect.Yes, there are several co-morbidities such as overweight, lack of enough exercise ( it just hurts too much), high blood preasure (kept very well in check by medication) psoriasis on hands(pusteln) and feet ( most comon) with caused arthritis and ,what we call in Germany, Arthrose,  (have had two knee replacements) in all joints.not to forget Dercum's disease and fibromyalgie. In spite of all this, I have a very fulfilled life, many good friends and a good portion of optimisim.
Thank you for your help and good words.
With best wishes, Kattamakii

[Dr Santos]

Hi Kattamakii,

Indeed positive thinking and good network of support from friends and family goes a long way in managing any kind of condition or disease. As long as your blood pressure is controlled, other co-morbidities are managed, and healthy lifestyle is is present, there is nothing to worry about. Regular follow-up and monitoring by your doctor is also important. Will be here for you  if you have additional queries. Take care always and warm regards.

[naglete]

hi everyone! i actually diagnosed this myself after many visits to doctors who thought i was mad or a hypochondriac! I bought the info to my consultant after gathering my own information on the internet.I sadly find most doctors very dismissive of this painful disease and as a result we are less inclined to seek medical help or support for this.I have at least 14 lumps all symmetrical on my body ie on both arms, opposite sides of the trunk, back of my knees,on the front of both ankles,on my hips, the list goes on!! It has slowed me down considerably and I'm only 45, there has to be a common cause or link that causes this but just hasn't been researched enough as the medical profession appear to have no interest in this disease so I'm delighted to find this site, does anyone know of a good research article I could read or any medical professional specialising in this? Many thanks

[Dr Santos]

Hi,
How are you? The article by Drs Brorson and Faghe published in the The Journal of the Swedish Medical Association (ref:http://dercums_data.tripod.com/brorson.html) and the more recent article Dr Yousefi may be helpful ( http://www.mdjunction.com/dercums-disease/articles/dercums-disease-study). Take care and regards.

[Radhope]

Are you familiar with the FDRS (Fat Disorder Reseacy Society) www.fatdisorders.org... Dr Karen Herbst is the medical advisor and rare adipose disorder research...

This organization is relatively new but it is growing quickly...their goals are: pursuit of a cure; education and patient advocacy....

I personally have been diagnosed with Dercums Stage III and Lipedema Stage II which are 2 of the 4 identified Rare Adipose Disorders...

[Dr Santos]

Hi,
Thanks so much for the information and  link.  Looking for a specialist who understands these symptoms can be very hard to find. And this is indeed very helpful to a lot of people especially to other members of the forum who also have the same condition. A good support group and presence of co-advocates will go a very long way. Take care  and warm regards.

[micki517]

My husband is a Gulf War veteran who began forming lipomas while serving in the Gulf.  These lumps would come infrequently, until the past 4 years.  He has been out of teh Gulf for almost 20 years now, but the lipomas are coming on fast.  He currently has almost 500 lumps ranging from pea size to golf ball size, including one on his sternum with a 3" diameter.  They are all over his body from his calves to his forearms and to his neck.  They are generally symmetrical, but at this point, they are just all over his arms, thighs, and his torso (front and back).  The VA sends his from specialist to specialist, but they do not know what to do.  Some doctors tell him he is "fat" and needs to diet (he is 5'6" and 220), and others tell him they don't know what to do because there are so many of them.  At one point, they were removing the lumps one at a time, but they have now stopped offering this option.  He does have pain from the lumps, but more as a result of thier locations (near joints or against his spine).  He is also feeling weaker in the areas where he is most covered by the lumps.
So, any advice?
Is there any evidence to this being a Gulf War issue?  
Thank you,
Michele Luck

[amcken3]

I don't know if it is related but I do know there is a link with inflammation. A military specialist told me mega doses of vitamin C. Also taking daily medium chain triglycerides has reduced the pain and size of mine, look into that. It turns out it is an essential fat. God bless you and your husband.

[justrobin1111]

Discovery Channel had an episode featuring Dr. Herbst called "The Man with a 1000 lumps" about dercums - he was a young veteran with similar problems as your husbands.

Dr. Santos,
I have this painful Dercums Disease, but I have large lumps on the back of my head, and now have intracranial hypertension. I wonder if you have ever heard of the two being related?  I also have epidural fat in my spinal canal and fatty liver (i do not drink) low vitamin d, sleep apnea - so many co morbidities.

I am a Kaiser patient, who often do not treat these diseases, but offer pain meds. I have a large one, like a long hard golfball,on my sternum and im worried it may be dangerous, also another large 5" painful one just under left ribcage. The two on the back of my head are hard, large, and I have had a constant headache for a very long time.

If you or anyone have had similar symptoms i would love to hear from you

[Kattamaki]

Dear Robin,
You must have difficulties sleeping also, I am so sorry for you. I myself have had DD for over 40 years. The lipomas (there could be a thousand, from rice kernel  to golf ball size) are strewn all over my body, however I think there are also some on my lung, because of the constant strong pain. Thank goodness there are only small and rather flat ones on my head.
Do you have the possibility to get an appointment with Dr. Herbst? She could tell you exactly what to do. I have seen her twice although I live in Germany.
The discussions on facebook dercum site are very interesting, look into it.
I wish you all the best, don't forget, distraction is the best medicine!!
(I started this post)  Kattamaki

[justrobin1111]

THanks so much for your reply - I do have trouble sleeping from this and use lots of pillows. I also am so tired that I sleep far more than i used to although that is very difficult with children! I am so sorry you havve had to live with this disease for 40 years. I hope they are helping you in Germany! Dr. Herbst is no longer accepting patients, unfortunately ;(  She is a darling but very involved in awareness and researching a cure for us.  Thank you so very much Kattamaki for your infor4mation and help today! best of wishes in your recovery

[Kattamaki]

There were times when I slept more than being awake, but I was actually hiding from myself, not wanting to accept my destiny. It took me several years to get to where I am now. Occupying my head with creative ideas, taking care of a large archive and translating(all from home)have made it bearable but of course there are dreadfull days inbetween. Do you take any pain killers? I went to a pain clinic to have an expert give me a perscription, they were very understanding. There is one thing you will have to learn to accept and that is, that there is no cure for this illness. We can only try to live a healthy life, eat proper foods, no junk, and walk about 30 minutes a day and swim, Thats easier said than done, I know. I wish you all the very best.Big hug from Carina  

[justrobin1111]

Thanks so much sweet carina!  I joined the online community and Im trying to get referred to dr herbst. I actually have so many overlapping symptoms between the differend adipose disorders, I cant wait to get a dIAGNOSIS! The head pain never ending constant headache is so bad and i can barely walk now. I really cant wait until I can get the largest ones removed so i can function again! at least the ones on the back of my head, I dream all the time of waking up with no headache. As soon as I get a referal I will go bakc to pain clinic, without a diagnosis, they wont treat me. I really do not like pain meds, but will do anything to take care of my family

peace and light to you!

Robin

[777Laura]

I am searching for a diagnosis myself!  I have lumps coming out in mass.  I am not sure if it is familial multiple angiolipomatosis or dercum's disease, or if they are the same... The pathology report said angiolipoma.  So many are coming out but I do not have "painful fat deposits", only a massive amount of fatty tumors.  They are pressing on my nerves and blood vessels, causing circulation problems.  Needless to say, it is frightening.  I am so happy to hear that someone has had DD for so many years, this is hopeful.  I have been so afraid of this being fatal, quickly.  

Need to know more!
Thanx, Laura

[Kattamaki]

Hi Laura,
Glad you found your way here. You seem to be well informed about our illness. You definitly have Type III of Dercums, I have Type II, painful lipomas and fatt and several other autoimmune illnesses. In the past two years(I am 66), my breathing has become difficult so that I have a mask with an air pump to make sure I get enough oxogen at night.
Are you familiar with the English speaking support groups? The one on facebook is very informative and active. It is a closed group so that the "normal public is not included, in other words, your posts do not appear elsewhere. Otherwise there is a yahoo group, MDJunction, the Dercum Society etc. I have all sorts of links to medical documents. A rather new one (2011) is: Orphanet Journal of Rare Diseases - http://www.ojrd.com/content/7/1/23       Take care, CMR

[jubilee537]

my wife has been dx with all types of dercums.  she is now 50 very much disabled.  when she was dx the dr stated she was one of the worst patients she had ever seen.  how do i know when her time (death) is getting close?  i know there is not much research on this very ugly disease but as my wife gets worse i would like to know what to look out for besides the obvious.  her ability to remember, think straight, etc.  is becoming worse and worse. i am her 24/7 caregiver.   having been judges so incorrectly by so many drs prior to her official dx i trust no doctors but yet seek help in determining the end and how to best help her during this time.
thanks for listening
steve

[Kattamaki]

Dear Steve,
I can literally feel your deep concern. There is no literature on the morbidity of DD. I know of two cases of death but there is no proof that DD was the cause. If you allow me, my only suggestion for your wife is take as much pain med.as necessary to be able to find enough distraction. It has worked for me to an extent, so that I have been rather productive in the past two years since I started this thread.There has not been a breakthrough in research and doctors are still arrogant and ignorant. Of course I also think about the future and how much of it I still have left.(I'm 68) But I can look back upon my life and say I accomplished something. My suggestion for you is to gestalt the presious time you have with your wife with as much distraction and love as possible.  

[Babswuby]

I got my first lump on my upper leg when I was 23. Through the years, I noticed a few more and they would burn and hurt so I went to many different doctors and they all thought I was nuts. They kept telling me that the lumps could not possible hurt because they were just fatty cysts. Finally, I spent about a year on the internet and figured out what was wrong with me.
I now have a wonderful doctor who did her own research and came to the same conclusion.
My question to everyone is, do any of you have any other diseases with the Dercums? I have Polycythemia Vera (blood cancer), Dercums, Hereditary Angioedema, Aspergillus (aspergillosis) Fumigatus, Diabetes, COPD, Emphysema, Sleep Apnea, high blood pressure and a leaking heart valve.
I can't help but think that they could somehow be related to the Dercums.
Babs

[Kattamaki]

Dear Babs,
Sounds really dreadful. How is the overall pain level? It is known that if you have one auto immune illness, the next one will follow. The strange thing is, these illnesses are not caused by a weakened immune system, but one that is over-active, one that attacks the own body. We all carry genes with defects, thats why in certain families you will find the same disease over generations. With all the horrible things you have, it must be very difficult to know where one illness starts and the other stops, practically impossible if there are overlapping symptoms. Try to eat and live as healthy as possible, thats the only help I can give you. PS There are several Dercum groups on facebook, yahoo, MDJunction etc.with lots of informational data bases.Good luck to you!