Dercum’s Disease: Let's create a support group

Oh, and thank you for the Mayo docs info!

Hi, hope I'm doing this correctly!!
I am fortunate, having only one (not many!) burning lump. It was diagnosed as lipoma over 10 yrs ago. Dercum's diagnosis was only a few weeks back as I was just checking that lumps were stable and not sinister. Rheumatologist was asking weird questions about cognitive function, fatigue, etc. This is something I have had concerns about for some time - but it seems glossed over in the Dercum's literature, which is lump focussed. I've got the lumps, but its the other symptons that are causing the problems!
Not sure how it all fits together, and I'm still new to Dercum's as the explanation of a wide range of symptoms.
Any thoughts welcome.

Hi! Just fyi: there is a good support group for Dercum’s on Facebook…check it out! Hope you’re feeling better! I do find that eating low fat and mostly vegetarian and vegan meals helps me feel better, more energy, and less fatigue. Blessings to you!! Also, low stress and exercise/swimming helps a ton! Also, lymphatic massage (gentle) helps greatly and I almost always wear my compression socks as well now, truly helps!!

Hello. Thanks for the friendly welcome. Exercise is something I have been trying to ensure that I do regularly - but so fatigued of late. And yes, diet must be improved
I am experimenting with one of those 'revitive' machines that sends electricity into the legs. It seems to be improving the feeling of heaviness when walking. I'll trial it over the next month to see if it is effective for me. I'll post the outcome in case it is useful for others. Thanks for the blessing! That is important to me.

Good news for those who have or need diagnosis for a fat disorder such as lipedema, Dercum's Disease, etc! Dr. Karen Herbst is a Board-Certified Endocrinologist and Internationally Recognized Lipedema Expert who authored this paper: https://www.ncbi.nlm.nih.gov/books/NBK552156/
Dr. Herbst is now the Head of Research, Director of Diagnostic and Preventative Medicine at The Roxbury Institute and seeing patients in Tucson. I am told she will be conducting trials on the new treatment for Dercum's as mentioned in my previous posts. Link to her website: https://www.advancedlipedematreatment.com/karen-herbst-phd-md

@colleenyoung. Are there any ongoing clinical studies regarding the treatment, cure, and diagnosis of Dercum's Disease?

Hi Colleen, Please see my posts from April 13 & 14. Dr. Herbst is now with Advanced Lipedema Treatment and seeing patients. She said it will be awhile before she begins trials for the med CBL-514. I saw her on July 9th, and she said I have Dercum's, an autoimmune disorder which she suspects ADL (I'm having my genetics done), dysautonomia, venous insufficiency. She said I have thousands of lipomas and fibrosis from broken small vessels which are leaking their contents causing the fibrosis and lipomas. I was diagnosed with Mast Cell Activation Syndrome a year ago, and that is what's causing the inflammation within my small vessels causing them to break open. Also recently found by a good internist, I had a prior septal infarct, polycythemia, and a suspicious lung nodule. Good times! 🙂 I'm taking the supplements suggested by Dr. Herbst, starting a keto diet, and have appointment with a vascular surgeon. Good luck to you and everyone on this journey! https://www.advancedlipedematreatment.com/

@slhayton, you can search the database of clinical trials here: https://clinicaltrials.gov/

To find clinical trials at Mayo Clinic use this site: https://www.mayo.edu/research/clinical-trials

If you have general questions regarding research at Mayo Clinic or would like assistance searching for clinical studies that match your interests, please contact:

Non-cancer clinical studies questions
Phone: 800-664-4542 (toll-free). This number is answered from 8 a.m. to 5 p.m. CST, Monday through Friday.

I had mad

I had made a comment about lumps under my skin deeper and painful
I have graves and diabetes /arthritis Who would I see to figure it out?
Vicki