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Dercum’s Disease: Let's create a support group
Chronic Pain | Last Active: 2 days ago | Replies (115)Comment receiving replies
I can't help with finding a doctor other than Dr. Herbst.
For me liposuction didn't work for treating my lipomas. The procedure doesn't always remove the whole tumor. General surgery works better for me as it removes the tumors more thoroughly. I would much rather have surgical scars than the pain I have to deal with. I often have pain in an area where no tumor can be felt and that has to do with adipose tissue.
Replies to "I can't help with finding a doctor other than Dr. Herbst. For me liposuction didn't work..."
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It is truly unfortunate that there aren’t more doctors familiar with methods that would work for Dercum’s. The Herbstaffiliated articles (including “Standards of Care” could inform willing /curious practitioners — our favorite kind— who may be willing to help.I’ve also had 3 VERY uncomfortable abdominal lipomas removed (actually 2 angiolipomas - is this a vEDS thing?).
Dercum’s definitely does cause generalized inflammation and many suffer from Mast Cell Activation Syndrome so I’m continually on a variety of MCAS inhibitors (Wikipedia lays out the different classes, Drs. Maitland and Afrin both have good info on MCAS).
Following a lower inflammation diet is recommended as well.
This. Definitely. ISN’T. Easy. ❤️🩹