Dercum’s Disease: Looking to connect with others

She is a Board-Certified Endocrinologist
Internationally Recognized Lipedema Expert
Head of Research, Director of Diagnostic and Preventative Medicine at The Roxbury Institute
Vice President of the Lipedema World Alliance

Wow

Thanks and you as well.

I have a suggestion for all of you who are not finding help. I have been all over clinical trials, treatments, genetic defects, everything that comes up in a search. I've seen a geneticist. dermatologist, of course my GP who has never heard of it and probably doesn't want to hear about it again. I decided to go a different route. I called my insurance and asked for a case manager. They will help you with getting approvals for testing, meds, procedures. They become an advocate for you. I am presently trying for approval to see Dr. Herbst, along with meds and testing. I have a wealth of info if anyone is interested? My disease is going into hyperdrive. Accelerating very fast. The pain is becoming intolerable. More and more lipomas. I wish you all luck and I would help any of you if I can. My heart goes out to all of you! Good luck.

Thank you for your good advice on case management. I'm curious, what if anything was the geneticist able to tell you? Dr Herbst had me get my genes done with the company Sequence and then diagnosed me with Autoimmune Lymphoproliferative Syndrome based on a faulty FASLG gene.

Do you also have MCAS? I was taking H1 and H2 blockers, but stopped them due to liver fibrosis and not wanting to stay on those meds indefinitely. I feel like my DD is also in hyperdrive and wondering if stopping the histamine blockers have anything to do with it.

That's interesting to hear about the case manager. I logged onto my health insurance recently and noticed that I had an option to request a "healthcare advocate" - I didn't think much of it, found the information I needed for that day and then logged off.

I probably wouldn't have even thought about it again if I hadn't read your post. I'm off to explore what my health insurance means by "healthcare advocate" - if it's what you describe, I'll be thrilled! Managing this all by myself is exhausting.

You and I are on the same journey. Managing this alone is a never-ending loop of disappointments. A health care advocate and case manager are the same. I think? The person I talked to explained them as an advocate. They will help you find treatments, get approval for doctors and treatments. I think it's at least worth a try. Good luck in your search. If I find anything helpful, I will be sure to post it here. Good luck.

The geneticist didn't give me anything to go on. All I got from him was the diagnosis. But I needed that to go forward with clinical trials, doctors believing I had it. I have sent him articles on transpositions in PTEN gene, but I never hear back from him. I think doctors don't care to work on this disease and it's very obvious to me, why.
You know, I saw an article on the effects of Histamine in Dercums disease. If I can find it I will post it to you. I just read this today.... This series presents 7 cases where DD followed an infection either histoplasmosis, coccidioidomycosis or Lyme disease. Known changes in fat by infectious agents are reviewed. Early diagnosis and treatment of infections may prevent further damage to fat. Pretty interesting. Here's the link to it.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6940691/

About 3 years ago I was diagnosed with Chronic Fatigue Syndrome, Fibromyalgia, and Long Covid, then Chronic Lymphocytic Leukemia (but still in "watch and wait" category). Since then I've had HORRIBLE extreme fatigue, nerve pain, headaches. Two years ago I started to have a pain in my left abdomen. A sonar scan was done, then a CT scan and nothing was there that would explain the pain. Then I was tested for ACNES syndrome (nerve entrapment). It isn't that. I had a total hysterectomy years ago so it can't be related to anything like that. Doctors can't see any reason for the pain. Since then the pain, which feels to me like it is in the fat "roll" across my abdomen, has steadily gotten worse, radiates around to my lower back, and is constant. I sometimes feel it on the right side too. I believe I have Dercum's on my outer thighs since I can feel little nodules and when I press on them it's painful (I thought this was the fibromyalgia), but does the abdomen pain sound familiar to anyone? I can't feel any nodules there but that's probably because it's a more fatty area. It aches so much I feel slightly nauseous most of the time.

You sound right to me. I have pain all over. In the abdomen, back, neck. shoulders, hips. Sometimes in odd places where there are lipomas. It is constantly moving from place to place. Have you been diagnosed yet? I would tell you to search for CBL-514 clinical trial. It is the only open, recruiting trial. You'd need a diagnosis to get in the trial. I suggest that because trials for Dercums are very rare. Caliway pharmaceuticals is the sponsor and the trial is in St. Louis, Mo. They have had a lot of success with the previous trials, so much that they were given a fast track by the FDA. All of the other symptoms you mention go along with it for me also. Here's a link to the trial. I was too old so I got removed. I was so excited until my personal interview where they told me I was denied. I hope you can get in on it. Good luck.
https://clinicaltrials.gov/study/NCT06303570?cond=Dercum%27s%20disease&term=adiposis%20dolorosa&intr=cbl-514&rank=2