Mystery Diagnosis - The Man With 100 Lumps (Dercum's Disease

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[matt]

Thanks! I hadn't seen this 20 min. video in whole before.

I saw the latter part of the video last year when sjohn posted it and we discussed about it briefly in what causes lipomas thread.

The video holds some pretty interesting things:

• A young man in his 20s has 850 lipomas all over his body
• His lipomas are painful
• His lipomas are well-circumcised
• He found his lipomas when in military doing heavy exercise (boot camp)
• He quickly (within months) develops dozens of more lumps
• After the training he had less stress and says the lumps got smaller (!?) for a while but more appeared later
• He immediately developed many new lipomas to the exact spots where old ones were surgically removed
• Dr. Karen Herbst diagnoses the condition as Dercum's Disease and gives an explanation why the lumps appear:
  - toxins leak from blood vessels
  - toxins are usually easily flushed out of the body but in lipomatosis too much of the fluid is leaked and the toxins stay for some unknown reason
  - to clean up the fluid and the inflammation caused by the toxins the body sends blood cells
  - to feed the above blood cells the body produces fat which gradually forms into solid growths

It's the last part that I have difficulties to believe in. Why on earth would the body create huge lumps of fat for the small macrophages? Not likely. But it's the best explanation she had at the time.

Dr. Herbst also believes the patient has a genetic predisposition and that the extreme physical exercise may have triggered the onset. She believes this happened because of the lactic acid got released and sit around the patient's body without never getting flushed out. She also says this is why the symptoms shortly improved during the summer break and the lipomas actually shrunk a little.

Hmm.. I think she gives pretty good assumptions but in the end that's all they are. I currently disagree in various points.

[surfsteve]

Funny. The way I see the story is he had almost 200 lipomas before he went to see a doctor and thanks to the system he now has over 800. And he thinks they are helping him? No wonder he joined the army!

Too bad that guy Dercum got there first. He could have had a new disease named after him. I don't get it. What is the difference between the disease and getting lipomas? Was it the sheer number of them or the fact that they hurt?

I think she's right about the toxins building up. Perhaps his body was handling it till it got above his threshold. Not very many people litter when their environment is clean. It's as if they don't want to be the first one to litter. But when there is trash all over the place it seems that people don't care because the place is a mess already. Maybe the body works the same way. It also seems like a person under stress, like maybe they are being chased by someone wouldn't care about littering and would probably drop whatever they are carrying to help them run faster. Maybe the body acts the same way in the way when it handles toxins.

[matt]

I think it was the fact the lipomas hurt. There's no test for it though.

According to the Wikipedia the associated symptoms in Dercum’s disease include obesity, fatty deposits, easy bruisability, sleep disturbances, impaired memory, depression, difficulty concentrating, anxiety, rapid heartbeat, shortness of breath, diabetes, bloating, constipation, fatigue, weakness and joint and muscle aches. Dercum's most commonly appears in females between the ages of 35 and 50 years of age.

They really know almost nothing about it.

[surfsteve]

My "lipoma's" have been extremely painful and I've even had bruises around them. I still feel pain in the area where my smaller lipoma was but haven't been able to find any lump for the past two weeks. The last time I noticed a lump there was about 2 months prior. I just assumed it was still there because the area still hurts and was actually surprised not to be able to find one the next time I checked for one, which was right after I joined this forum.

[The100LumpGuy]

Funny. The way I see the story is he had almost 200 lipomas before he went to see a doctor and thanks to the system he now has over 800. And he thinks they are helping him? No wonder he joined the army!

Too bad that guy Dercum got there first. He could have had a new disease named after him. I don't get it. What is the difference between the disease and getting lipomas? Was it the sheer number of them or the fact that they hurt?

I think she's right about the toxins building up. Perhaps his body was handling it till it got above his threshold. Not very many people litter when their environment is clean. It's as if they don't want to be the first one to litter. But when there is trash all over the place it seems that people don't care because the place is a mess already. Maybe the body works the same way. It also seems like a person under stress, like maybe they are being chased by someone wouldn't care about littering and would probably drop whatever they are carrying to help them run faster. Maybe the body acts the same way in the way when it handles toxins.

Actually, Jerk, I was in the Air Force, and I didn't start seeing lumps (angiolipomas) until about 6 months into my service. I had maybe 60 when I first sought out help but most were very small, only one being bigger than 3mm.

I joined the Air Force bc I wanted to provide for my family and get a better education. Which, thanks to the "system", I am now medically retired and have a great job that I was able to get due to my "system-education".

And the Derm. Dr. that initially misdiagnosed and mistreated me was a civilian Doctor. The military doctor is the one who helped me get in-contact with Dr. Herbst, get my real diagnosis and start getting better treatment.

Now, for an update on me: It has been almost 6 years now and I continue to get more angiolipomas. I just had one removed on my chest, directly over my heart, that was about 10cm long by 4cm wide by 2 cm thick, the biggest one I've ever had.

I have completely quit taking any type of medication bc nothing helps, not long term anyways. It hurts bad when it's cold, but the rest of the time I have learned to live with the pain and I practice exercises to build up my tolerance such as meditation.

I will not let Adiposis Dolorosa (Dercums) ruin my life or control it. I'm not going to lay down for this disease.

The best advice I can give to someone who has this or think they might: Use heat for the swelling, find your happy place (meditation, yoga, running, medicinal mj, etc.), and have the big ones removed.

To that last point, make sure that get every bit of the fat associated with that lipoma or angio-lipoma. If they dont, there's a very good chance you will get a new growth in smaller clusters like I did.

So, anyways, was just searching myself on the internet, and found this site. Good site. Good luck and my deepest condolences to those who have this horrible affliction.

- Jake

[KathyClaytor]

Hi 100 lump guy,

I am thinking I have Durcums now. I have an uncountable amount of lipomas, certainly over 1,000. What really struck me about your last comment was how you said you gave up the meds because they don't help. That is totally how I feel. I was on a morphine drip for a foot surgery once, and it did nothing for my usual pain. Physical therapy helps much more than the meds. For me I squish the bad fluid out of my painful parts with stretching, ice and massage. If I do indeed have Durcums, then I think the doctor is right on about the part of the lymph not clearing and exercise being bad because of the lactic acid not clearing. That is totally what it feels like to me. I also just started injecting my painful parts with IV fluid (on my own, no doctor told me to). It is some sweet relief. It dilutes the bad stuff so it doesn't hurt so much.

[Guest]

surfsteve, I have also seen another doctor say that the body creates the lipomas because the lymph is not clearing well and lymph has a lot of fat in it, so the body just uses the fat in the lymph to create the lipomas. Another theory of why the lipoma's might form is that in the absence of the lymph clearing well the body might try to sequester the toxins in the lymph by wrapping the toxins in a fat tumor. The body mostly tries to fail in ways that will keep it going longer.

Anyway no matter how the fat tumors form, after they form there is sluggish removal of lymph verified by imaging studies. That is the difference between Dercums and Familial Multiple Lipomatosis. There is no problem problems in the lymphatic system with FML.

[cta7978b]

Jake, I think you are a heterozygote (or possible even a B6 responsive homozygote) for homocystinuria. The condition is a connective tissue disorder in which your endothelial system (vascular and lymphatics) are easily damaged by excess homocysteine.

It's most common in people with Irish heritage (and other Europeans). I think you need to lower your homocysteine levels. Get your thyroid checked as well, I think in many cases the development of autoimmune thyroiditis causes the spike in homocysteine.

I think the inflammation found in the fat and lymphatics is homocystein