Should There be an Increased Focus on Lipedema, the Lymphatic System, and Adipose Tissue Fibrosis in Ehlers-Danlos Syndrome, Fibromyalgia and ME/CFS?


Senior Member
Along with fatigue and nausea, pain has been one of the defining symptoms of my daughter’s illness. After she was diagnosed in 2018-2019 at age 14-15 with hypermobile Ehlers-Danlos syndrome (EDS), chronic fatigue syndrome (ME/CFS), craniocervical instability, Chiari malformation, occult tethered cord syndrome, postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS), we learned of treatments that have helped to reduce her pain. Low-Dose naltrexone has reduced the pain in her back and ribs. After starting mast cell stabilizers, her joints have become less likely to pop out of place, reducing pain from joint dislocations.

But certain forms of pain persisted and even worsened over time. In particular, many parts of her body, including her abdomen and upper arms, were painful when touched. She also had pain in her chest, lower back near her coccyx, and face, among other locations. One doctor suggested the pain was caused by central sensitization, potentially related to her MCAS or craniocervical instability.