← Return to Dercum’s Disease: Looking to connect with others
DiscussionDercum’s Disease: Looking to connect with others
Chronic Pain | Last Active: Feb 5 2:44pm | Replies (145)Comment receiving replies
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