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Dercum’s Disease: Looking to connect with others

Chronic Pain | Last Active: Feb 5 2:44pm | Replies (145)

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@loriskt

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.

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Replies to "About 3 years ago I was diagnosed with Chronic Fatigue Syndrome, Fibromyalgia, and Long Covid, then..."

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