I have got numerous distinct lumps and nodules (lipoma’s) on my arms, my upper legs, my back and abdomen. The painful ones on my arms are removed now, and now I have one under the skin of my abdomen (in the neigbourhoud of my stomach) which started to hurt a few months ago. According to your information I have got typ III. As far as I can recall I do not have any of the other common problems except for some tingling and numbness. Would this ‘qualify’ for Dercums’s disease? Is it true that the disease is rare, and difficult for doctors to diagnose?
As best can be said for the most part we are our own diagnostics…I simply provided my Dr with info on it and showed him where symptoms matched up to what I told him and he couldnt explain…When it forst started on me I was extremely tired and sick…But I have other problems too…Best I can say is print out all the info you can find and take it to your Dr…
It tends to be difficult to diagnose because doctors are not familiar with it. There is no test for it yet. Generally you have to see a number of specialists to have other diseases ruled out first and then get a clinical diagnosis of DD. You sound like you are in the earlier stages of Dercums, at least to me. I have all three types now, as many of us do.
In the area where you had the lump removed, did many more show up? I have thousands of lumps. All of the fat on my body is full. Small, large ,diffuse, hard layers and in rows along nerves. Of course, I have had it for 40 years. I would say that if you have DD, you would have many many lumps…not just a few!
Thanks for your reply. I had about sixty lumps, and had a number of lumps on my arms removed. So I have got about 50 now, in my arms, abdomen and upper parts of bot my legs. I noticed that Dr typically look at the lumps you want to have checked because they are hurting, but tend to ask any further. This week one of the lumps on my abdomen will be checked, and I really hope that it has not turned to a cancerous lump.
It still sounds like Dercum’s to me. If the lump on your abdomen os indeed a lipoma, the chances of it turning cancerous are slim to none.
I am sad the say it sounds like DD from this angle, but as previously stated there is no definat answer. Few doctors have even heard of it. I even went to a hemotologist who did every blood test there is and couldn’t come up with an answer. I was diagnosed by a determologist who previously practiced internal medicine. He told me so causually “Oh you have Dercums Disease”, I was numb, and asked “whats DD?” His answer was pretty simple but not at all helpful. Its painful lipomas. But after I started researching on line, I found out so much more.
I was releived I finally had answer after so many years of frustration but the out look is very bleak. I still have a hard time wrapping my brain around the fact that I have this disease. I can’t do the running around and traveling like I used to. I am too exhausted all the time, I know that my time being able to work is on a very limited time frame. I am forgetting too much these days. I have always had a fantastic memory my doc has depended on, and now its going and I have a hard time finishing sentences with simple words and things I know I know but can’t find it in my brain.
I have so many lumps on my arms people ask me about them when I am at work and I try and explain DD but most everyone gives me a totally blank look and say they have never heard of it. I was really thrilled to find Careplace, so I can discuss it with people who really understand and know how it really feels. NOt that I am glad anyone has this painful disease but its great knowing I am not alone. Plus GOD is always with me and has blessed me with a wonderful family and great freinds.
God Bless,
Brennie
Thank you for taking the time and effort to write about your experiences. It must be hard to live with DD that has spread so much. Once I have news from the hospital (upcoming Thursday) I will let you know whether they found a normal lipoma or that the lumb has turned bad.
please do keep us posted…I am having a hernia repaired soon and I am also going to have some lumps removed while they are in there.have informed Dr H and I want the Dr to send her samples of what they find so I can get a better diagnosis or maybe its not DD…But with all the things happening to me being just like everyone elses’ I am pretty sure DD is exactly what it is…
Hope your lumps come out to be banine, I had seven removed from my back a few months ago, one was the oldest lipomas I remember having, it was the size of a large egg. And several smaller ones. None were malignant, Thank GOD. But afterwards I relized that having them removed creates scar tissue and in my case more lipomas and more pain. So at this point I am not willing to have anymore taken out. My doctor joked with me after he took out the ones on my back, he said it looked like I had been in a bar fight and gotten knifed and shot in the back. Ha!
I have so many in my arms and legs I can’t even imagine how painful it would be not to mention all the scars. I really wouldn’t mind the scars that much if I felt like it would permenatly get rid of them, but I that doesn’t seem to be possible.
God BLess,
Brennie
I hope that you Brennie and everybody who has lumps removed has tissue sent to Dr. Herbst so she can help us. Please ask your doctor to send either the tissue itself or the pathology report to her. if you haven’t already. My PCP said she does not want to get involved and to ask my rhumatologist which I will next visit. If you can still count your lumps…you aren’t too bad yet. Mine tend to grow in rows along nerve pathways pushing on the nerve causing extreme pain. I would also say that you should see if you have the other symptoms like irritable bowel, bruising, sleep disturbances, dry eye and mouth and the other symptoms and also symptoms generallyh associated with fibromyalgia. The difference between fibro and DD is the DD lumps hurt like crazy when you press on them as they are pressing on nerves and you don’t even have lumps with fibromyalgia just sore spots!!
The Dr will call me upcoming Tuesday, and tell me about the test results. I want to have the lump removed anyway. Once it is removed it will be sent for a lab test. It is only after that test that I will be a 100% sure. I will ask if the want to make a report in English and have it sent to Dr Herbst.
The Dr called me today and said the lump is benign. It will be removed next Wednesday. I was really releaved that it all came out okay.
Thank God the tumor is benign. What a relief that is. I have had seven removed from by back and all were benign. I don’t think I will have any more removed, I can’t say that it helped me, at least the ones in my back. I might change my mind if one comes up in a place I just can’t live with it, but right now I am not up for it.
Best of luck,
Brennie
I am so sorry that it sounds like DD. If the lump is DD, the cells in the tissue will be larger and look different to “normal” fat cells. I can’t believe that so many doctors are removing these DD lumps which is a futile effort as many more will grow. What makes it so bad is that they are growing along the nerves and pressing on them. The band growing from the back of my spine comes along the sciatic nerve down the outside of my leg and also surrounds my hip joint. They are getting larger all the time so whatever systemic cause is inflaming them must be getting worse. I have not had any removed as I had so many so fast it would have been impossible. I don’t think this kind of lipoma becomes cancer but they can get so big they press on your organs. It becomes so incapicating you can’t move without pain so you sit around and gain weight. I used to think that I had so many different illnesses that I must be nuts or something. Now I see that most are related to DD. The IBS, the diabetes from the weight gain, the sloppy hanging fat on my upper arms and abdomen, the migrains, the neck pain and yes the depression, are all from DD. I give up on walking it is extremely painful. I can’t stand up more than a few minutes. I don’t care anymore what people think, I have a horrible disease and I must have support and accomodations!!
I am so sorry that it sounds like DD. If the lump is DD, the cells in the tissue will be larger and look different to “normal” fat cells.
I can’t believe that so many doctors are removing these DD lumps which is a futile effort as many more will grow. What makes it so bad is that they are growing along the nerves and pressing on them. The band growing from the back of my spine comes along the sciatic nerve down the outside of my leg and also surrounds my hip joint.
They are getting larger all the time so whatever systemic cause is inflaming them must be getting worse.
I have not had any removed as I had so many so fast it would have been impossible. I don’t think this kind of lipoma becomes cancer but they can get so big they press on your organs. It becomes so incarnating you can’t move without pain so you sit around and gain weight.
I used to think that I had so many different illnesses that I must be nuts or something. Now I see that most are related to DD. The IBS, the diabetes from the weight gain, the sloppy hanging fat on my upper arms and abdomen, the migrains, the neck pain and yes the depression, are all from DD. I give up on walking it is extremely painful. I can’t stand up more than a few minutes.
I don’t care anymore what people think, I have a horrible disease and I must have support and accommodations!!
Sylvia, I could have written that myself! Word for word.
Pamela