Chronic Pain members - Welcome, please introduce yourself

@lisette43 It sounds like you have a pretty good thing going for yourself and are checking a lot of the pain management plan boxes. Good for you! You are doing awesome overall. I understand being lonely and wanting more positive social interactions. My kids are grown, my husband and friends all work, and I work to keep myself as active mentally and physically as I can. You are blessed to have your faith, volunteer opportunities, 2 dogs, family, and a neighbor that holds you accountable to them (that one cracked me up - tee hee).

It's commendable that you recognize the need to pull back on volunteering for now. You come first before you can help anyone else. Push/crash cycles are not fun and generally not worth it either.

You mention that you will have your neuromodulator removed when the battery dies. How long have you used a neuromodulator? Why do you think it's time to remove it?

I don't think the neuromodulator is helping me much. The Abbott Rep has been working with me recently to try to improve the function. For a while I felt like they insert these devices and then forget about you. Perhaps Abbott is trying to do better fu with the patients.

Where do I go to find any new additions to chronic pain section. Each day I receive an e mail , when I click on Chronic pain, all I see the same headings each day

Hi, my name is Warren. I have dry eye disease, whose cause has yet to be determined (after 6 years). I don't have pain in the sense of "hurt", but I do have it in the sense of irritation that is constant any time I have my eyes open. For that reason it seems I am more similar and sympathetic to people who have chronic pain than other types of disorders. People do not understand how it feels to constantly have sand in your eyes, or large foreign objects, and burning, and when one looks--there's nothing there! When I leave home or go outdoors, I find that wearing a snug-fitting pair of high-school chemistry lab goggles help keep my eyes from drying out so fast helps, but it is humiliating, and you should hear the comments some people make! I've said enough for now, but I am so glad to be part of this group. I hope I can help some of you. Thanks. Warren

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?

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.