Adiposis Dolorosa aka Dercums Disease

Art3moe, I have Dercums Disease. I remember the first tumor, and how the disease progressed. I can't remember the names of all of the doctors I was referred to and all of the tests they did I got the usual wrong diagnosis including MS. I was sent out more than once with a prescription for an antidepressant and it was even suggested that I seek a counselor.
This is an autoimmune disease that is inherited from the maternal side of the family. The tumors vary in size some are very hard, some soft, some are very painful to touch. It begin with the first tumor, it was a few years later before the muscle pain and the fever started. I was very active walking 2 to 5 miles daily, hiking, dancing, gymnastics etc full of energy. I went from that life to walking down the drive way for mail caused pain in my thighs. The temperature started in the fall and everyday it would be from 99 to 100.6. The weight gain was 45 pounds in 4 months all in my upper arms and stomach. That ruins a 24 inch waist line. I became unable to tolerate heat. Many days are like the flu body aches, temperature, hardly able to move. Since these tumors attach to nerves the pain is bad, you will have wasting away of muscle and some atrophy and areas that are numb. This disease also causes insulin resistance. I am also an insulin dependent diabetic taking 5 shots a day. During my many drs and testing I was tested for carpal tunnel and didn't have it. With no change in jobs or anything else that would have caused it, it suddenly is was extremely severe and surgery was required on both wrists. These tumors if removed will just return. Every few days I find a new one. From MRIs I know I have some that is not visible or I can't feel them by touch. Simple housework can cause horrible pain for days. Walking any distance, using your arms such as painting, raking can cause pain for days. Activity causes inflammation which causes even more pain with the already painful tumors. I have been watching Mystery Diagnosis and can relate. I was going through the same thing from starting in 1990 through 2002. I was very angry during that time and 10 different doctors I was treated like a person that went to the doctor if I felt a twinge and was unable to handle pain or that I wanted attention, maybe I was trying to get narcotics for pain or that I was mentally disturbed. I was even told of course if you walk and you are out of shape you will be sore. The rapid weight gain was because I had to be living on fatty foods, and basically my only activity was feeding myself. I have never ate fried foods, or junk foods, I had a very healthy diet, and was very active. It is true this disease is so rare that very few doctors have heard of it, and certainly have not seen it.
I knew my mother had experienced some of the symptoms but died before it had progressed. I knew that a great aunt had been diagnosed with a rare disease, but she also was deceased. I had to track down distant relatives as a desperate attempt to find out the name of the rare disease. Unless you have this it is impossible to understand the pain that it causes. There is no cure, no medication or treatment to slow or stop progression. Pain medication offers little comfort if you want to take something that you can still function with. No activity at all with no emotional stress, offers the most comfortable days for me. Don't move the furniture to clean, avoid the areas in my house that has stairs, give up shopping, gardening, fishing, walking the dogs. Sit on the couch with you feet elevated, and learn to like TV. reading is a problem because holding a book or magazine up and turning pages causes pain. I gave up painting wall murals, and other painting, woodworking, and other hobbies that I love because of the pain. I just fail to understand why doctors do not know about a disease that is this awful. I do not know anyone that has this. My very understand doctor who watches Mystery Diagnosis has seen his only case of Dercums Disease that was featured on the show. Are you or anyone else being treated by a doctor that has any experience with this disease? I really don't know how the replies, posts etc works. Art3moe you are not alone. I have wondered how many people have this, and why it has not received any public attention.
This seems to be a very painful destructive disease that is kept so secret that the doctors don't even know about it. It is only fatal even the tumors form in the heart, which is possible, but usually they stay in the arms and upper body and legs. A miracle would be good lets all say a special prayer.

Hello--

Although I have had chronic pain for 15yrs & have read this wonderful forum for several months, I have never posted on this particular board. My name is Stacy, two car accidents, three back surgeries & a balky thyroid that causes carpal & tarsal tunnel syndrome flares. I want to reply to this particular thread because I do know that Louise Reed, the wife of writer and radical politico John Reed (remember Warren Beatty's movie "Reds?") suffered from this condition. However, her coping skills aren't to be recommended (poor dear drank -- all that was available at the time, I suppose). I also want to suggest to those with the syndrome that perhaps reading might be possible by two means. First, I have seen cookbook supports that hold a book upright so one may read it without holding it & it also ensures that the pages are easily turned. Next is the newfangled Kindle. There are many classic books in the public domain available upon it for free & while the initial price is an investment (small, medium or large depending on your income -- Mom & Dad Christmas'd me with mine -- very lucky!) and is easy to operate with minimal strain upon the hands (you can prop it up on a pillow or lay it flat). I will compose a proper introduction later. This is an amazing board that features people in such trying circumstances and happily, their most loving and intelligent features always shine through.

@ cobra & art3moe,
I am to suffering by grenades of fat (hence my user name) that are debilitating ! HELP ! I have gained almost 80lbs in 2 1/2 years..dieted with lil success so went back to eating normally. I am constantly tired with numerous new lumps & bumps, that 1/2 of are excruciating and bruise easily. I have so many in my hips, bottocks and now new ones appearing frequentlu up and won my arms. Sometimes it hurts to take a shower and Im out of breath frequently. It's so ridiculoua and I have no way of explaining it to someone who has never felt this, and I also feel like a hypochondriac.. Most frusturating is that when i go to the dr. they don;t want to hear about it and say that my other problems are more concerning!! I have had the same dr. run arounds from them blaming my symptoms on my hep c to my goiter to esptein bar virus to low white blood cells, got tested for SLE (systematic lupus) and that came back negative and all they found was some weird leiden V FACTOR that means Im susceptible to clotting. I looked up painful lipomas and caame across Dercums, & LOW AND BEHOLD I fit every symptom!! Help I need a dr. in my area who will see me and diagnose me. I am in southern ca, waiting painfully.

I am at the Mayo clinic this week and received both the diagnosis of fibromyalgia and Dercum's disease with probably Chronic Fatigue Syndrome too. I have to have more tests before that one is confirmed though. The only lumps that I am currently aware of are in my abdomen and on my rib cage and they are extremely painful. They have been there for months now, but my doctor's just kind of blew me off once they knew I was coming to Mayo. They gave me a couple of injections yesterday to try to help with the pain and inflammation, which seems to be helping some. They also prescribed pain patches so hopefully that will also work. My biggest problem so far with the Dercum's, which I understand fibro patients deal with too, is the extreme pain that my bra is causing. By the end of the day, I feel like it is squeezing me to death. I had to go up two sizes and get an extender. I know to some this probably sounds ridiculous, but it is so miserable. This diagnosis came as a surprise to me. The more I read, the more scared I become. I have a 13 year old with Aspergers who needs his mom and an 18 year old with chronic pain of her own. I will do my best to try to manage all of this, but with the extreme fatigue and the pain, I know it won't come easy.

Thank you so much Shannon. I love the gentle hugs since we know that's all many of us can stand these days. I did discover that I was wrong about the lumps. My thighs are filled with little tiny ones that are painful to the touch, just not as painful as my chest/abdomen. There are a few in other places too, just not as many. I am doing better emotionally then I was. I know it's not going to be easy, but I will do everything I can to get control of this and not let it get control of me. I know that my life has to change. It will never be what it was before this horrific pain started, but neither can I let it continue to keep me down as much as it currently does.

For the next 5 weeks, I have to come off of all of my medications. I will be allowed to use the patches however, which I guess are not really pain patches, but more numbing, but hopefully, they will provide me with some relief. I was told that it is vitally important during that time for me to get massage therapy and find a therapy pool. They will be important afterwards as well, but not to the extent that they are currently.

I will attempt to watch that episode. I tend to fall asleep watching anything.

Thank you!
Cathy

Hi All

My husband was diagnosed with Adiposis Dolorosa or Dercum's and he has had many surgery's to rid him of some of the most painful lumps he has. He usually gets a few taken out once a year he has many lumps on his arms and chest area. He drops things constantly because of the ones on his arms. We are still looking for a specialist to help us deal with this disease, none of the Dr.s around our area know much about it. If anyone knows of any type of herbal or medication to help we would be willing to try it. Or if you have any questions on dercum's you can ask maybe we can help.