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Short Dercum's Stories


Rebecca

My name is Rebecca I live in San Antonio, TX. I am 44 years old. I have had the symptoms of Dercums since my twenties. I never knew what the nodules were. I often wondered why my arms, legs, back and stomach ached so much. My family doctor said they were lymphomas and nothing to worry about. Of course the pain has worsened with time. I had one removed about 3 years ago, I can't believe the relief & the lessening of pain. I wish I could have all of them removed. Last month (June 02) I printed the website info and took it to my Endocrinologist Dr Fetchick. She confirmed that I have all the symptoms and asked me what I would like to do about it? How should I know! From what I read there is nothing to do. My left side is more affected than my right. They have become progressively worse and more painful. At times the pain in my left arm is so great that holding it close to me or warming it up is the only thing that helps. I at times wish I could open the whole arm up and remove all the lymphomas.

Just a added note -- my father also had knots, as he called them, on his back. They were very painful to him and he often thought they were muscle knots, but they never went away.


Anonymous

Unfortunately,  at the moment I am hesitant to include my name on the registry even though I have been diagnosed, etc. Guess the reason is that I am not sure I am ready to deal with the potential of countless e-mail from other folks that registration might generate.

Call it "chicken", or just simply a desire to be somewhat "private", but not selfish; maybe I will change my mind in the near future.   By that time, I will have turned into one giant lipoma at the rate my body is producing them; have had about 3 dozen removed, but it seems pointless because they are replaced eventually by others; usually wait to remove them until the pain becomes more than I want to bear, or until I cannot stand the sight of them anymore; they are present throughout the torso, back, upper legs, arms, buttocks,  and probably other places I have yet to discover!  It may sound strange, but somehow my sense of  humor helps somewhat  to "mentally" diminish the  pain associated with the tumors, albeit very temporarily.  I am male,  just under 6 ft. tall, and weigh about 190.   Late father had some lipomas, but not to the extent that I have them.

 Incidentally, my oldest daughter, now 34, has "inherited" the wonderful  genetic trait and has discovered  several lipomas of her own.  Hopefully, she will not develop enough to become a full blown Dercum's statistic.  Have forwarded your message on to her, not to frighten her,  but to keep her informed.

I am 58 years old...first tumor occurred at age 32 and was located deep in my lower left back.  Identified as a lipoma by Dr. Thomas Chin (Surgeon) and   diagnosed years  later by Dr. Walter Yourchek (Dermatologist).  Both practice, or practiced in Stockton, CA.


Dimps

I am a 51 year old female and I live in Essex in the UK.   First lipomas appeared in 1981 on my arms. By 1984 had begun to spread rapidly on arms and upper thighs. 1986 had 18 removed at London hospital. Told at that time, just fatty tissue. Tumors continued to grow even more rapidly and I was told they were best left alone. One GP told me that they themselves were harmless but it was where they grew that could cause problems, but still never referred me to anyone. Began having terrible pain with all tumors by 1990 but told they do not hurt. Symptoms of tiredness, etc. began around that time but Doctors ignored it. Began having symptoms of Rheumatoid arthritis in 1996 --  blood tests showed negative. By 1998 having serious sleep & pain problems and passed from one consultant to another. Saw cardiovascular doctor in 1999 and analysis report was checked from previous operations of lipomas and told they were angiolipomas and "yes" they do hurt. Arranged to have another 25 removed. While still trying to get a diagnosis for my joint pains I checked the web and took relevant information to my GP who agreed that the symptoms were "Dercum's". In between finally had blood test showing positive for Rheumatoid arthritis. Another visit to cardiovascular consultant (just a routine one) and they asked me what I wanted them to do as I had this "Dercum's syndrome" and all they could do was remove the painful lumps. So basically I had been diagnosed prior to that visit, they just omitted telling me. It was actually by this time May 2001. before I was truly told the diagnosis.


Lynn

It would be great if you had a simple form to fill out...but here it goes.....
Age 46, male, in B.C., Canada.  First tumours showed up at age 16 -- about 10 on my back.  Since then I have seen numerous doctors without a diagnosis.  A few years ago I presented some pages from the web, and after some study, I was confirmed by my doctor as having Dercums. ( by the way that's after 2 dermatologists who didn't know what it was.)  Now I  have had well over 300 tumours removed, 36 just this year, one yesterday, and several more this Sept. by a surgeon that is familiar with the disease. Tumours have started to spread to my legs as of last year, now there are dozens.  Of interest, I found in my case that if a large number of tumours are removed the pain greatly diminishes, including the tumours that are still there. Surgery at least offers me a relief for a short time (1 year + or -) and much improved mobility.  Like my present Dr. said, this is literally a survival tactic.

Not the best of news, there are new tumours on my neck, some pretty deep they don't want to touch as one is 1/2" from the spine.  I'm ready for September for another round in O.R.

[10/31/02 Update]
Another 38 tumors removed. The result after a month, is definitely more energy in my case, better sleep and more active. Still weight gain is a problem. One has to wonder at what point surgery will no longer have a benefit. Still, only a week off work, the outcome is still profound enough to go on. Over the years I have kept on top of having these things removed, I believe I am reaping the benefits of it now. In no way would I suggest removing four hundred tumors all at once or over 30 years as I have. Surgery has it's own risks and there have been numerous infections, complications and midnight visits to hospital as a result. My final thought is, if it's bad enough, you do what you have to, to survive. Wishing you all better treatments the future.


Colin

I developed my first lipoma when I was a child on my right wrist, it wasn't until I was in my late twenties that they began to spread. I am now 40 years old and I have over a hundred visible forms of the various related tumours. The main areas of concern are my abdomen and lower back where I have had 18 of my 21 (to date) operations (the most recent being dangerously close to my
spinal column). Six of my removals have been from my thighs & arms.
 

I suffer with the main symptoms of the disease i.e. constant pain, stiffness, fatigue, loss of concentration, headache, sleeping disorders, susceptible to illness etc.

I was only diagnosed with Dercums disease in the beginning of 2002 by a locum doctor and this has been confirmed By Dr A Warin of The Royal Devon & Exeter Hospital. It is believed that the disease is inheritory and I have since been informed that several of my relatives on my mothers side (including my mother & sisters) have suffered in the past with such symptoms which are now believe to be Dercum's.

It took many years of suffering to reach this diagnosis which was purely by chance that the locum doctors was taking the surgery. My family doctors have never heard of the disease (I have since sent them information which I have obtained via the internet). Nobody seem to know how to treat the disease, have you any further information (probably a bit more technical) than the general information which is accessible on the net which I can forward to my doctors.


Denise

I live in Victoria, Australia. I have had DD for about 16 years, ( that I know of). First signs about then with a large lump on my neck like a small birds egg. It was removed and re appeared about 3 years later. Docs unsure what it was. Over the next couple of years I started noticing a large slow weight gain, for no reason I might add. After about 17 small "very painful grain of rice size lumps" were removed a very large very painful lump appeared on my back on my left side. It was removed and I couldn't believe my eyes and my GP was shocked, it was huge inside  a bit like an ice bear only a small side in appearance on the out side, massive inside. All this time no diagnoses though, just "strange fatty lumps" I had to travel not long after the massive one was removed and went to a doctor in another town to have the stitches removed, and within 2 minutes went through my entire symptoms and bingo.. Dercums disease was explained in the most Shocking but kind way. Dr. Lee had a large book with pictures and all the info. I could possibly want.   It is now midnight my time and I am sitting here feeling very sorry for my self, today I had 11 more sites operation, from small to large, and I can't sleep, so here I am.. I have managed with the most incredible starvation almost to keep my weight at a copeable(sic) level (by me anyway) it makes my surgeon happy though as he said that it makes removable easier. I am going to the GP on Friday to see if I can try some of the new weight reducing medications to help in that area. I was so "happy" strange as it may be, this morning laying in the OR waiting for the anesthetists to put me under for the op and he came straight up to me and said "Dercums Disease -- that won me some money as a student I went into a comp to find a strange disease and this was it. You are the second lady I have ever seen with it, come and see me in a few days and we will talk."  So people if I find out anything of interest I will contact you again. Thank you for letting me join this elite club even though the dues are high (LOL) I  remain yours,   Denise


MiamiWes

I am a female American Indian living in Michigan.  The onset was about age 24 in California. Not obese. My current age is 42. Dad had it (now deceased) and brother has it as well. Not obese at the time of onset but weight is steadily increasing. I have hundreds of tumors in my legs and had 6 removed in 1988 in Oklahoma. Pain at its worse prior to menses. Will have surgery next week to remove some from leg and upper arm. They are now spreading over my entire body. Large one in femur that we are going to watch for growth. I had decided to deal with the pain the best I can and only have surgery for the ones that become unbearable or hinder activity. I now have difficulty walking and difficulty moving arm and picking things up.  There are far move than can ever be removed. The past couple months disease is becoming much more severe and spreading. Naturally scared about my future and how to cope. Trusting God.
 


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Updated on 12 Dec 2003

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