I want to be a member so that I can see what other people are going thru also dealing with this disease
Hello, my name is Linda and I am interested in Dercum’s disease because unfortunately, I have it. I have too many painful lumps to even begin to count. I have learned to deal with it by remaining as active as my condition will allow. Stay warm, try to control pain before it becomes too severe, keep a good outlook, remain positive and appreciate everything i can still do instead of dwelling on those I can’t.
Linda Macon
I am from the UK and was actively involved with martial arts at an international level and enjoyed working as a network-systems consultant for a great international company.
As most stories go, once I came down with Dercums my social and work life declined very rapidly until what it is today - that is now about as exciting as watching paint dry 
These days I spend what little energies I have in using what I have learnt over the years to manage the illness as best as possible, and also learning and understanding from medical articles and fellow sufferers about the body and Dercums.
Biggest change in my life ironically is that its made me more laid back and appreciate the wonders of life more.
As a dercum sufferer I experience:
- Encapsulated and diffuse growths in many locations
- The exquisite pains
- The draining exhaustion/fatigue
- Intense heat from the core body usually due to weather or infection/virus
- Cold and numbness combined with drowsy usually due to weather (cool-cold)
- And also fatty hands/groin/armpit, fluid in ears, migraines,muscle spasms, list goes on…
I have multiple lipomas. I need help to reduce it.
I’ve just discovered this disease. I’ve been plagued by painful unexplained lipomas for years. I’m very interested to know more.
I was dxed with Dercum’s in April of this year. It hit me fast and furious and I want to learn all I can about it “IN A PEACEFUL FORUM”
Hello, I have DD and want to connect with others with the same condition.
DX with DD about 4 yrs ago, tried everything, filled out paperwork for research study, emailed doctor doing study 3x w/o any response at all. Am out on total disability from my former job, seen almost every kind of doctor/specialist/pain management without any help for underlying disease process (some tried but nothing helped for long - others didn’t even listen - usual DD patient’s story). On 12 medications for symptomatic TX which helps some but not nearly enough and is progressing. Just wondering what’s up with the study, any publish date yet and why doctor won’t respond? “Bebe” for short
Hi there - I have Dercum’s Disease and thought I’d check out Care Place.
Hello:
My name is Betty and I am 59 years old and my daughter and I both have Dercums Disease. We live in Woodland Park, Colorado. I’m always looking for information on this disease so I’m glad David Hughes created Careplace. It’s a great site!
I was recently diagnosed with Dercum’s, though I’ve known I’ve had it for a few years (surprise!, surprise!). I became agoraphobic in 1992, though I’m much better now, and was diagnosed with fibromyalgia a few years later (and all the ‘extras’ that goes with it). Though those illnesses have been extremely hard, there were a lot of people to talk to about them. This illness is different; it’s very lonely. There are not many people who understand how I’m feeling and what I’m going through. I’m looking for friends that I can talk to and ask questions of that understand.
I was just recently diagnosed with Dercum’s. It’s been an on-going struggle for me, starting with unexplained weight gain 3 years ago, leading up to these fatty deposits that are painful. I’m usually about 150 lbs but when I got up to 200lbs I started worrying. I walked 2-4 miles daily, always watch what I eat…but nothing mattered with the constant weight gain. Then I developed alot more headaches, depression, sweating, sleeplessness and weakness. I would just like to know if there are other’s I can talk to who have this?
I was diagnosed Nov. 2005 by my internist. I have been struggling with symptoms for 6 years. I live in Michigan and I am very interested in finding someone near me to talk to for support and friendship.
I was diagnosed with DD in 2005, I live in the UK and would love to hear from others also in the UK. There seems to be a difference of opinion between specialists over here as to what kind of specialist is needed to treat DD, so I have been passed from pillar to post!!
Recently diagnosed and lipomas seem to spread rapidly. Have abundant tumors in my abdomen area, inside thighs, under arms and wrists, back & top of bottom. General ache that was diagnosed as arthritis 5 years ago. Unexplained ‘blow outs’, painful swelling. Had a Teritoma removed from my ovary October 2006 and 2 large lipomas, since then I have roughly counted 45 odd lumps. Would appreciate advice from other Dercums Disease sufferers with regards to pain refief, how quickly the disease spreads etc.
i’ve been living with this disease for about a year and a half now. I’m looking for some people to talk to. Adam
I have suffered from odd and severe pain for that last 10 years – and the pain has become almost unbearable since October last year. Lumps have been growing in my right leg along with very painful fat.
I need support and connections with any one who is sufferin this way.
hello i am Adam and i am 30 years old living with DD for over a year now. I will do what ever it takes to help others not suffer and go through what i am going through.
Hi,
I just ran across this site. I am 25 years old and have been suffering from many of the symptoms of Dercums Disease. I have not been diagnosed and don’t really know if this is what I have. I’ve been through eight months of tests now… but still no answers.