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Chronic Pain members - Welcome, please introduce yourself

Chronic Pain | Last Active: 16 hours ago | Replies (7049)

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@duxbury

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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Replies to "My name is Anne and I am writing this for my 17 yr old son named..."

@duxbury Don't know where you are located but I strongly suggest you contact a counseling center. They would be able to connect him with the proper support group in your area. If not a center a hospital/ medical center that deals with these issues should also be able to help you find some assistance. He definitely needs to have someone he can talk with about what he is going through .

Hello Anne. I was wondering if you ever found a support group for young adults. My chronic pain journey has been very similar to your sons but only recently have I looked for support from others like me my age. I’m 20 this year but my pain started when I was 14. I was diagnosed with SFN in 2020 but recently my pain has been worse and it feels like I am starting all over again. My neurologist and I talk in two days to discuss more options but it’s difficult to be optimistic after all this time. It’s exhausting trying to keep up with my body and it’s demands.