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Kennedy_Nicole

841d

Hello I’m new tk the app happy to be here and talk to others that deal with the awful horrific pain I deal with each day. I wanted to see what if ahh treatments have helped each of you and just get more info all together. I figured I can never stop trying or learning and I don’t want this illness to take anymore of me than it already has. Thank you for listening ❤️

Top reply
    • MaggieQuinn

      824d

      It may seem daunting, but coming off narcotics after 12 years on them having worked my way up to Dilauded, I️ learned about opioid-induced hyperalgesia making your nerves even more sensitive to painful stimuli, it feels like they’re working because your pain is immediately worse when they wear off, but once I️ made it through the withdrawal process, my pain was where it used to be on the narcotics without them. I️ highly recommend looking into PEMS units, the Oska Pulse is an amazing one because unlike the mats you can wear it throughout the day, it’s small but covers a beachball sized area. There are also new implants available called PNS implants that unlike SCS are about the size of a human hair and target the specific affected nerve and actually rewire how your brain perceives pain, they work like a pacemaker does, sending small electrical impulses that interrupt the signals from the affected nerve. I’m having the SPRINT unit implanted in a month, it’s taken out after 60 days, and within those 60 days 74% of patients reported a 50% decrease in pain, and the vet eight studies, the same amount found substantial pain relief in the months after it had been removed. Even those that didn’t experience a decrease in pain did experience an increase in their quality of life. I️ know someone personally who’s pain stayed at a 7, but they were able to come off narcotics and were able to start hiking again (albeit lower impact than before the pain, but still a HUGE difference) which was something they’d missed desperately. I️ was 7 when I️ was diagnosed, and in the 17 years I’ve had this horrible condition, finding an amazing specialist who was knowledgeable about all of the new treatments available made ALL the difference.

    • MaggieQuinn

      824d

      It may seem daunting, but coming off narcotics after 12 years on them having worked my way up to Dilauded, I️ learned about opioid-induced hyperalgesia making your nerves even more sensitive to painful stimuli, it feels like they’re working because your pain is immediately worse when they wear off, but once I️ made it through the withdrawal process, my pain was where it used to be on the narcotics without them. I️ highly recommend looking into PEMS units, the Oska Pulse is an amazing one because unlike the mats you can wear it throughout the day, it’s small but covers a beachball sized area. There are also new implants available called PNS implants that unlike SCS are about the size of a human hair and target the specific affected nerve and actually rewire how your brain perceives pain, they work like a pacemaker does, sending small electrical impulses that interrupt the signals from the affected nerve. I’m having the SPRINT unit implanted in a month, it’s taken out after 60 days, and within those 60 days 74% of patients reported a 50% decrease in pain, and the vet eight studies, the same amount found substantial pain relief in the months after it had been removed. Even those that didn’t experience a decrease in pain did experience an increase in their quality of life. I️ know someone personally who’s pain stayed at a 7, but they were able to come off narcotics and were able to start hiking again (albeit lower impact than before the pain, but still a HUGE difference) which was something they’d missed desperately. I️ was 7 when I️ was diagnosed, and in the 17 years I’ve had this horrible condition, finding an amazing specialist who was knowledgeable about all of the new treatments available made ALL the difference.

    • marisa

      841d

      5% Lidocaine is a lifesaver for my RSD!!

    • ps.iloveyou2002

      841d

      Hi 🤗. I am only on low dose naltrexone. I’m still in a lot of pain although it helps just a bit. Methotrexate helps a lot with my joint pain but I need a bit more relief.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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