Could I possibly have dercum's disease?

The section is for the disussion of Dercum's Disease (Adiposis Dolorosa), a disease in the lipoma family. It is characterized by painful, irregular fatty swellings or lipomas and is frequently misdiagnosed.

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fluffyuffykins

Could I possibly have dercum's disease?

Post by fluffyuffykins » Tue Oct 09, 2012 10:11 am

About two years ago I noticed a lump on my right side near my hip. I didn't really hurt and never caused me much worry, because it didn't really grow. About a year later I noticed a similar lump, just a tad larger, on my left side (a little higher than the other). I was told by a doctor they were "fatty tumors" and not to worry about them. Fast forward to now. I have several of these lumps in sizes varying from a pea to a penny all over my torso, mostly on my sides. I also have found one on my upper thigh and a small on on my arm. I usually notice them due to the pain they cause. Some of them really hurt and cause me daily discomfort. Others don't bother me too much unless they are pressed or accidentally bumped/brushed against, in which case they will hurt for days on end. My current doc thinks they are cysts or lipomas. She says they seem a tad harder than normal lipomas though. Of course, I'm worried about cancer, so I googled it and came back with Dercum's. Do you think this is a good possibility based on the info I've given? I'd just like to know what is causing these. I'm really, really scared. Thank you.
Guest

Re: Could I possibly have dercum's disease?

Post by Guest » Tue Oct 09, 2012 12:34 pm

Hi. I am sorry to hear about your problem. Only your doctor can give you a diagnosis. However, dercums syndrome is rare and so some doctors might have trouble diagnosing it. Still, you should see a good doctor, rather than relying on us on a message board.

Having said that, here is some information.

1. Dercums is nearly always associated with significant generalized weight gain apart from the fatty deposits. Have you gained a lot of weight? This should be a relatively early symptom in the progression of Dercums.

2. Dercums fat deposits are not "harder than normal". FML tumors are encased in a fiber shell, but Dercums fat deposits are not.

3. It is odd that your doctor would say that they are "cysts or lipomas". I would probably see a different doctor if I were you and if I had the ability to do so.

4. Some FML tumors can be painful, but this can be fixed by simply removing them. Pain from Dercums is different and not solved as easily. Surgery doesn't help dercums much. When FML tumors are painful, the pain is quite localized to the tumor, which is well defined.

5. Like the weight gain, fatigue is a relatively early symptom in the progression of Dercums. FML tumors do not cause fatigue.

Of course there are other diseases that present with lumps besides FML and Dercums. This is why you should see a good doctor and push for some real answers.
DDPatient

Re: Could I possibly have dercum's disease?

Post by DDPatient » Fri Oct 12, 2012 8:17 pm

I have a confirmed diagnosis of Dercum's Disease and the symptoms you describe could be it. DD is NOT always accompanied by weight gain, but generalized fatigue and often all-over pain or arthritis-type pain are present. When mine first started, I did not have a noticeable pain component, except when the lipomas were pressed, but it has developed. Type 2 DD, which is the type most women have, does usually involve being overweight, but may or may not involve any sudden weight gain (some have lifelong weight issues, others do gain with the onset of the disease). However, Type 3 DD, which is what most men have but also some women, does not involve being overweight. The disease tends to get particularly active in patients their late 30's-50's, but most of us can trace symptoms back to our 20's. The lipomas can be large or small, firm or squishy, encapsulated, unencapsulated, or angiolipomas. There are support groups on MDJunction and Facebook, so you can ask your questions of actual patients. I know of about 1000 people with DD and it is suspected to be less rare than originally thought. Most doctors have never heard of it and are likely to dismiss your symptoms or misdiagnose (fibromyalgia, rheumatoid arthritis, chronic fatigue syndrome and more). You can print out a brochure to learn more here:
http://www.heartlandconnection.com/uplo ... 082311.pdf
johnny2x

Re: Could I possibly have dercum's disease?

Post by johnny2x » Fri Nov 02, 2012 3:53 pm

I am having a similar problem. I have close to 30 lipomas now all on my torso and mostly on my back. Some of them seem to be deep and I am in a constant state of pain or at least uncomfortably.

I have been to the doctor now and he is sending me to get a piece of one removed to diagnosis. I want to give him the benefit of the doubt but he doesn't seem to either believe that I am in pain or is just wondering why. HE keeps telling me that lipoma do not hurt and they shouldn't be hurting me.

They are removing a piece to check for fibrosis. My fear is that after spending the money getting it analyzed the only answer will be that they are normal lipomas as if that answer should make them stop hurting.

I mentioned dercums syndrome after reading about it and he never heard of it.

Was anyone hear officially diagnosed with dercums syndrome and if so what were the determining factors ?
Tobis7
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Re: Could I possibly have dercum's disease?

Post by Tobis7 » Mon Nov 05, 2012 1:41 pm

Hello Guys according to my view the purpose of Dercum's disease is most likely "so rare" is because very few physicians know about as well as and when individuals try to talk about it with them, they are usually giggled out of the workplace and ignored.Whats you opinion about that?Thanks for sharing!!
Guest

Re: Could I possibly have dercum's disease?

Post by Guest » Tue Nov 06, 2012 1:13 am

Tobis7 wrote:Hello Guys according to my view the purpose of Dercum's disease is most likely "so rare" is because very few physicians know about as well as and when individuals try to talk about it with them, they are usually giggled out of the workplace and ignored.Whats you opinion about that?Thanks for sharing!!

Tobis7: There is probably some modest underdiagnosis of Dercums Syndrome. But let's be clear: Dercums is definitely a rare disease, especially compared to common FML type lipomatosis. And the number of patients that have Dercums without the characteristic weight gain--now you are talking very very rare.

Part of the reason why "few physicians now about (Dercums)" is that they could go their whole career and never see someone with Dercum's symptoms, while they might see someone with common lipomas every other month.

Here is an analogy: If you have a severe unexpected headache, it could be the result of a rare brain cancer like anaplastic oligodendroglioma. People do get headaches from anaplastic oligodendroglioma. But if you get a headache, you would first focus on all of the more common causes of a headache before spending a lot of time worrying about having one of the most rare forms of brain cancer.

There are many disorders that can cause painful lumps.

Regards...............................
Tobis7
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Re: Could I possibly have dercum's disease?

Post by Tobis7 » Fri Jun 05, 2015 12:04 pm

Tobis7 wrote:Hello Guys according to my view the purpose of Dercum's disease is most likely "so rare" is because very few physicians know about as well as and when individuals try to talk about it with them, they are usually giggled out of the workplace and ignored.Whats you opinion about that?Thanks for sharing!!

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