My sister-in-law is in constant pain from Dercum's disease

January 24, 2012 8:38 AM

Does anyone know of a cure and/or effective treatment for Dercum's disease?

My sister-in-law is suffering from Dercum's disease. Twice a day, she dons a pneumatic suit that that massages her lymph nodes (for several hours each occasion). This treatment helps, but she is still in constant pain.

Here is what Wikipedia says about it:

http://en.wikipedia.org/wiki/Adiposis_dolorosa

Thanks in advance!

posted by Chasuk to health & fitness (4 answers total)

There's a lot of anecdotal evidence that some inflammatory conditions are linked to a gluten intolerance. I'd be really surprised if there was any actual scientific evidence linking it to this particular disease, but trying a 30-day no-gluten regimen would at least make her feel like she's doing something, and with luck she'll be one of the people who responds well to it.

(I am not a doctor, but I have rheumatoid arthritis that is strongly affected by gluten intake.)
posted by restless_nomad at 8:59 AM on January 24, 2012

What a horrible disease! My heart goes out to your sister-in-law.

The Wikipedia page you give the URL for has seen a lot of edits over the last few years, and glancing over them, I found the very first version to be the most congenial; the latest version strips out very interesting assertions that the disease occurs mainly in obese post-menopausal women (it seems to be the cause of the obesity) and that 20 times as many women have it as men, and-- most crucially-- that it seem to be an auto-immune problem (which the article likens to "rheumatism") rather than the result of any kind of metabolic defect.

I found an active support group full of very detailed accounts of symptoms and treatment protocols, but I didn't see any anecdotes of cures.

Given the chronic fevers, the increased vulnerability to infections, the association with adipose tissue, and the link with the lymph system, I wonder if Dercum's could be triggered by a fat-loving organism such as Pseudomonas aeruginosa that could also infect at least some class of lymphocytes (as TB does macrophages, for example), and I'd want to try (lipid soluble) IV antibiotics before I gave up on a cure and settled for mere amelioration, but good luck in finding a physician who'd go along with that in these increasingly antibiotic-phobic times.
posted by jamjam at 3:55 PM on January 24, 2012

I don't think any physician is likely to try a treatment with potential significant side effects with no evidence for effectiveness, based on an untested theory.

OP, has your sister tried getting recommendations from a large teaching hospital in your area, or even looking regionally for a specialist in this rare disease? It might be worth doing.
posted by treehorn+bunny at 6:39 PM on January 24, 2012

My apologies for being slow to respond to your responses.

Thank you, everyone, very much for your suggestions!
posted by Chasuk at 4:49 AM on March 12, 2012