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"They always write that "the hands are usually spared" - ha. Pay attention that the "high" points are not the knuckles, but the fatty deposits between the knuckles. I used to be the girl with the slim fingers that could fit all the rings that no one else could, and likewise my wrists could wear all the bracelets that were too tight for others - but now........"   Dorrit

Dorrit's Story
(No Happy Endings Here)

My Dercum came sneaking in on me over several years. Looking back, it started at least ten years ago, maybe even before that. Around 1994 I noticed that my good old worn out shoes - you know the ones you put on in the house when nobody sees it - started hurting me. If I had seen a doctor at that time he would probably have told me to buy some bigger shoes......

Also in those years I began having a problem of not being able to walk for long distances, or at least being very much behind if walking with others. I blamed that on my increasing weight and my laziness........ and talked to myself about pulling myself together and start training, but I couldn't. At that time there were visible swellings on top of my feet, from the toes and towards the ankles. My arms hurt, the doctor told me to stay off that computer, to let my arms rest. I did for several months - not getting better. Altogether there was something going on, I could not point it out.

Then in Sept. 1998 I was seeing a physiotherapist who worked very hard with me, and that was when the constant pain started, beginning in my heels. I could feel very tiny lumps, size of a rice grain, on the back of my heels, and they were sooo tender. Could not wear any shoes any longer. I have never been without pain from that time on. I started getting swellings on my insteps and along my Achilles tendons. I went to the doctor who sent me on to a lot of rheumatic specialists as I had one blood test showing something wrong (ANA=Antinuclear Antibody), often high with RA (Rheumatic Arthritis), SLE (Lupus) etc. None of the specialists could give me a diagnosis. At that time I had small "rice grains" all over my feet, shins, legs and hands. They were very tender, and slipped under my fingers when I tried to feel them. They felt like they were clinging to the blood vessels.

I was then sent to a surgeon who removed one of these small lumps and had it examined. "Angiolipoma" was the name - a mixture of blood vessels and fatty tissue.

By that time I had been studying all about each and every autoimmune disease because of that ANA test, but none of them did fit at all. One evening while searching the net for "angiolipomas" I came across a French site of which I understood practically nothing, although I speak a little French. But I stumbled on the mentioning of a disease that I had never heard of before: Dercum's Disease - looked it up in my encyclopedia - and there it was .......definite or indefinite painful fatty swellings. I did not doubt it for one minute. This was in the spring of 1999. Next morning I phoned my doctor and almost cried: "I've found it - I've found it". Of course he had never heard of this disease, but was very positive and willing to read about it, and came to the same conclusion - that this looked very much like what we were searching for.

I was sent to the local hospital, trying one of the recommended treatments, lidocaine IV. It can be risky, not many doctors want to give patients this treatment, but I survived without any side effects, but unfortunately also without any benefit.  In the autumn of 1999 I met with a plastic surgeon in order to ask him to remove the small grains from my heels. He had seen Dercum's before, and confirmed my diagnosis, but had not seen Dercum's on the lower legs and feet before, only on the thighs. But the swellings were of the same kind. He could not remove the lumps on my heels, but after some thought offered to try liposuction of my legs. He did not promise me that it would help, it was just a try. I had liposuction done in three places of my right leg, along the Achilles tendon, and a big lump on the inside of my knee was removed completely. BUT it did not help. The reason it takes away the pain is that all nerves are torn apart (have you ever seen liposuction performed on TV?), and it took over a year before I had a normal sense of feeling in my skin. Before that I could not feel the touch of my hands, just like having had local anesthetics at the dentist. But by that time the lump on my knee had grown out again, even bigger and more painful. So when someone asks me about liposuction, I always say no, don't do it.  Over the past years the disease has progressed in all of my body, feet, legs, thighs. buttock, ribs, arms, hands, neck, upper spine. My Dercum is more like swellings than lumps, it looks like water retained, but it is not. It is what is called "cushions" of fat. They always say that the hands are spared - my hands are the size of a man's and hurting very much.

My ability to walk and stand up has vanished, so that 6 months ago I got a power chair on which I am now totally dependent. I have put on a lot of weight though eating a very low fat diet. The pain can be bad, but the worst thing of all for me is the fatigue that comes with Dercum. At the moment I am in bed most of the day, only up for short times. I have stopped driving my car, never go anywhere anymore, just too tired. I am dependent on daily visits from the home care helpers. I feel that Mr. Dercum has stolen all aspects of my life, and I have a certain feeling that he will be my destiny, too, that Dercum will be the end of me.

I am quite convinced that my Dercum has some connection to the angiolipomas, that they started it going. But then what makes the angiolipomas come up? I have not found any inherited traces in my family. I haven't had any problems with diabetes or thyroid, like so many others.

I have searched the internet for treatment, reasons, "happy-ending" stories, found absolutely none. What is even worse, no one seems to do any research regarding this disease. Where do we find hope?

Dorrit, age 54, Denmark
E-mail me at: dercum@algon.dk

Visit Dorrit's website, in Danish, at Dercum's Disease
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Updated on 18 Nov 2003

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