My name is Anne and I am writing this for my 17 yr old son named Rene. He has been on a horrible journey with pain that has lasted four years and involves his digestion, pelvic floor, eyes, back head and legs. It started with extreme and constant gut pain. After seeing a gastroenterologist, and having numerous tests including blood, urine, endoscopy, and colonoscopy, he was diagnosed with IBS. After consulting with a dietician and following a FODMAP elimination and reintroduction diet he identified his intolerance to lactose and other foods that he avoids. This helps but did not eliminate his pain. after about a year he developed severe penis pain and urinary issues which were eventually diagnosed as pelvic floor disfunction. Months of PT with Pelvic health specialists enables him to control the pain minimally. About a year later he developed dry eye which was treated with gland plugs, Restasis and FML steroid drops, which left him with no more dry eye, but instead and unbearable stinging and burning sensation on the surface of his eyes. Unable to look at screens, go outdoors or basically be in any lighted situation. We then were referred to the Rheumatology team who put him through tests, but found nothing and sent him to neurology where they diagnosed ocular migraines. After MRI, DHE, Lumbar puncture and ketamine, they determined they could not help him He began to lose all hope of being healthy again. He had to quit college and come home. I got him connected with the comprehensive pain clinic here and they referred him to Dr Pedram Hamrah where he was diagnosed with Corneal Neuropathy . DR Hamrah referred Rene to another doctor and he is getting tested for small fiber neuropathy. In the meantime Rene continues to get worse and be in more pain that migrates throughout his body. He is hopeless most of the time and we are struggling to keep up spirits. I fear he may give up al together. Is there any kind of peer support group for young adults with chronic pain that you are aware of? Or one for SFN specifically?

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