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Old 12-22-2007, 10:00 AM   #1
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Default Dercums

I was wondering if there any members on these boards with Dercums. How do you deal with the pain and problems associated with the disease?

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Old 12-22-2007, 12:17 PM   #2
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No, but I'm wondering what Dercums is?
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Old 12-22-2007, 01:18 PM   #3
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I have been diagnosed with fibromyalgia, but I have many symptoms that some of my doctors say aren't (though some disagree) symptoms of fibromyalgia. Most of these fit with Dercums, especially the weather-induced flares, cognitive "spaciness," IBS, chronic headaches, susceptiblity to infections, lung issues, non-allergenic "allergic" symptyoms, autoimmune disease or unusual immunity issues, PMDD, Insulin Resistance... However, I only have one obvious lipoma, on my right upper arm from a car accident seat belt injury. I don't get fevers, in fact my body temp is low and rarely enters the "normal" range. I've been morbidly obese since age 5. I went from very slim at 4 to the fattest kid in kindergarten. It seems from what I've read that in Dercums, the weight gain tends to occur in late teen or early adulthood, and tends to be very unproportional (I'm fat all over). Do you know whether there is a genetic test for the disease? I was adopted as an infant and do not know my bio-family's medical history.

My guess is that I do not have Dercums, but may share many of your symptoms. I see that some doctors believe it is in the same family, or possibly even the same disease process as fibromyalgia and chronic fatigue.
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Old 12-23-2007, 04:36 AM   #4
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Hmm, as I read more about this disorder today, I have to wonder. By what the doctor's treating this and the patient's who have it say in the Dercums boards, I realize that I have many painful fat nodules that fit the discription of all 3 types of lipomas, especially type I in the upper arms.

I've been pointing these lumps (some very painful, some a little painful, and some not painful at all) out to doctors since I was 13. I was told that they were nothing to worry about and were just "normal clumps of fat". One on my neck was described as either fat or a swollen lymph gland. When I complained of them being painful I was told that I was probably making them sore by touching or pressing on them too much because they scared me (such as one in my breast).

The only lump that a doctor ever called a lipoma or fatty tumor was the one from the car accident, although I have one on the other arm, in about the same place, but to a much smaller degree (much bigger than the "fat clumps" but about 2/3 the size of the one on the arm that had been injured). Since the doctor saw both of these at the same time and only called the one a lipoma, I thought that the smaller one was too small to be considered a lipoma. No wonder I didn't consider the pea and walnut lumps lipomas. The "diagnosed" lipoma is about the size of a large orange. The one on the other arm is about the size of a tangerine. Both have a solid "ropey" border,but it's much more pronounced in the large one. Both are squishy fairly normal fat textured in the middle (maybe a little more solid and clumpy).

So from what I'm reading most Dercum's patients are misdiagnosed with fibro or have fibro in addition to the Dercum's. Is that true for you? When were you diagnosed, and did the doctor find it or did you suspect and have to educate your doctor?

I finally have doctors that respect and understand the fibro diagnosis, I'm afraid that even mentioning Dercum's would set off the "hypochondriac" alarm. I noticed that a lot of the information on line seems to point towards the lipomas causing obesity and not the other way around, and the "experts" aren't very optimistic about a person with dercum's being able to lose weight (or get pain relief if they do). What's your opinion of that?

I did become obese very rapidly at age 5, but this seems "too young" for Dercum's, though I see it can occur at any age. Hmm, you asked for answers, and all I have is questions. Sorry about that. Have you found the online support groups for Dercum's?

It does make me thing that I might need to start searching out the birth parents to find out a little more about my medical history. Although if there's no cure or treatment, I wonder if there is any point?
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Old 12-23-2007, 05:27 AM   #5
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Default No real answers

I don't know where to start with this, but first.... I was diagnosed with Dercums about 4 years ago. It is genetic in my case. My Dad had numerous lipoma. We didn't have a name for them then. I didn't have a problem with the lipoma themselves until I started into menopause. I now have several, all painful! One on the bottom of my foot has limited my ability to walk properly. I have all of the things you mentioned in your other post. I suspect I also have fibro along with the other, or as I understand this disease, It is like fibro only much worse.

Sadly the Drs. don't know a lot about Dercums. There is a Dr. in Calif. doing reserch on the disease and what causes it. And yes the Decums causes the weight gains not the other way around. It is not what you eat or the weight you gain that casuees the lipoma. There is an excellent site for those with lipoma to check out. lipomaforum.com lots of information there.

About 10 years ago I was working in my yard when I suddenly could not step over this realy low border that was around my flower bed. This was the first time I hadn't been able to do so. It was a a shock to me. It was like I couldn't pick my foot up. Wow! I was a very active person and suddenly I couldn't do so many things.

I am pretty sure I have had the disease in my system for many years and just didn't get that this was what it was. I have very large hips and legs and much smaller uppper body. I always wondered why the heck I was shaped like that. No amount of exercise helped that problem. Like I said I was very active. The lack of energy now preplexes me as much as the other problems that go along with Dercums. Yes, at times brain fog. Not so bad yet though. Forget what the words are I am looking for when speaking, etc.

I hope that you don't have Dercums, but if you do there is not a lot that can be done about it. I don't take anything stronger than advil for my aches and pains. I am highly allergic to most meds. I am hoping that someday they find a cure for all of the immune system diseases.

I don't know if this has helped you any or not. Check out the lipoma forum for more information than I can give here.

Good luck, and God bless, Ruth
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Old 12-23-2007, 04:29 PM   #6
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Thanks Ruth, for the information. I will look into the Dercum's forums. I don't know if this is definitively what I have (I'm also hoping not), but I've been interested in all autoimmune diseases ever since I was told that I have one but the doctor's couldn't tell me which one.

I was told four years ago that I had "some kind" of autoimmune disease, but that all of the blood tests were inconclusive (which apparently they often are) and that since they didn't know my medical history (what I might have inherited) I basically had to wait until enough organ damage was done to provide a diagnosis. They originally suspected Wegener's granulomatosis (which is generally fatal without treatment) but wouldn't start treatment until or unless more damage was done (because the autoimmune drugs are so toxic). That was a fun wait, but apparently Wegener's has been ruled out because Wegener's tends to progress like a house ablaze, and since my disorder is progressing much too slowly for WG, it's been ruled out (thankfully).

I've been studying autoimmune diseases every since, and I guess I'm not really worried about a diagnosis anymore (especially as one doctor put it, if I'm "lucky" I will never know what it is, meaning that there won't be enough damage to call it anything other than "undifferentiated autoimmune connective tissue dease.")

I do think eventually doctors (and maybe dietitians) will know a lot more about autoimmune and immunity disfunction disease, it's just a field that's in it's infancy now, so we often know as much or more than the doctors. That's so frustrating.

Since inflammation is involved in so many of the autoimmune disease, and so many of the treatments are anti-inflammatory drugs, I'm interested in the inflammation reducing diets, but don't know if they're just quackery. I recently found out that I'm allergic to NSAIDS. I was on relafen and it was causing severe asthma symptoms. I started taking fish oil capsules, but again it's too soon to make any conclusions.

You know, it just dawned on me that since the autoimmune diseases often have several names, maybe you'd get more responses to your questions if you included some of the other names for the disease in the post, such as "painful fat syndrome," adiposis dolorosa, or Ander's disease.

Well, I wish you well.
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Old 01-27-2009, 08:06 PM   #7
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Hi, I am just a newbie tonight. I am overweight and have multiple lipomas that are painful and a number of them that arent. I was dx with DD last March, although I have had it quite some time, I noticed my first lipoma back in 1988. It does hinder weight loss, I am currently on a waiting list to have gastric banding done on the NHS.
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Old 01-29-2009, 02:33 AM   #8
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Hi geordiegirl, I just noticed your post. I don't usually come to this thread, but I am glad I did tonight. I feel for you! This is a terrible disease that just robs you of your life in so many ways.

My problems have progressed to the point where I have to use a wheelchair in order to go out and do anything. The pain that walking brings is just too much. I know that I need to lose a lot more weight to make it easier, but as kaplods says it is almost impossible to do. This disease causes obesity from all I have read. I don't use that as an excuse to not try though. Regaining is the biggest problem.

I will be interested to see how the surgery turns out for you. Please let us know. Take care, Ruth
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