by Jeffrey Lubell
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.
These factors may well be contributing to her pain, but I have come to believe that the most proximate and important cause of the pain in her abdomen, chest, upper arms, and lower back has been the build-up of lymphatic fluid and the resulting formation and fibrosis of adipose tissue. I believe this because we have made dramatic gains in treating this pain through a combination of manual lymphatic drainage and massage techniques designed to break up fibrotic tissue and reduce the build-up of fluid in her tissues.
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