- CASE FILE
I'm 26 and have had chronic pain for 8 years. Diagnosed with Ehlers-Danlos syndrome, but am having severe unexplained respiratory issues.
ABOUT THIS CASE FILE
I've been searching for answers for 8 years. My problems began when I was 18 years old with rib pain, a deep achy pain, that never went away. I also have joint pain in most joints, headaches, tachycardia, muscle pain, muscle weakness, skin rashes, hair loss, Raynaud's phenomenon, among other things I'm probably forgetting! I've been diagnosed with the hypermobility type of Ehlers-Danlos syndrome (hEDS), postural orthostatic tachycardia syndrome (POTS), fibromyalgia, occipital neuralgia, and celiac disease. I've also had tests indicating other autoimmune disease, leading my doctors to think I may also have lupus. A big concern over the past 3 years has been my breathing. I am constantly short of breath, and feel as though I cannot take a deep, full breath. I'm being treated with inhalers for asthma and for COPD. Most of my pulmonary function testing is okay, although my muscle force testing was abnormal, with the maximal expiratory pressure being 35%. A doctor thought there could be something wrong with my diaphragm, but my sniff test was fine. CT scans have shown air trapping in the past, and I have had very high residual volume levels in the past. Doctors have basically told me that the inhalers I'm on should be helping more, and that they believe my breathing problems are likely from my Ehlers-Danlos syndrome, and that if that's the case, there isn't anything else they can do for me.