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persistant
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persistant

Newcomer, Female

Hi, I'm new here and wondered if there is a support forum for those diagnosed with CRPS? I'm also confused about status updates vs stories Jan 27, 2021

persistant was last seen:
Jan 29, 2021
  • My Story

    Hello, I discovered this website after reading TG957's success story describing recovery from CRPS on a CRPS forum. I had visited that forum only a few times and found it so depressing. There are very few success stories about CRPS--doctors told me it was incurable and that I would be on Gabapentin for the rest of my life. My CRPS is relatively mild and reading the horror stories on that forum made me so anxious. After reading TG's post there, I read Dr. Sarno's book as well as TG's book. I also started Alan's educational program. My history: I've had back issues since having my first child 37 years ago and had disc surgery just after the third was born 30 years ago. I heard of Dr. Sarno somewhere along the way but never read his book because I was convinced my problem was structural since most of my disc extruded during labor and delivery. Now I realize I have the classic TMS personality. I’ve struggled with anxiety and insomnia most of my life, even as a child. Since my CRPS symptoms began in November 2019, I've seen multiple doctors, several physical therapists, had injections, MRIs etc. I was diagnosed relatively quickly but because of my lumbar history, the PTs and physiatrist I saw all felt my foot pain was caused by lumbar stenosis. So I was never sure what was really causing the foot pain and I kept searching for answers. I finally reached full circle recently--I was told by a neurosurgeon that it was not related to my back, but was in fact CRPS. He recommended an implantable DRG simulator and I made an appointment at a pain clinic to find out more. I went back to the CRPS forum to research the stimulator and that is the day I found TG's story. I cancelled the appointment at the pain clinic and decided it was up to me to get better. I contacted my primary care physician for advice on weaning off Gabapentin and she gave me a five week schedule. The first two weeks went well and I was filled with hope. Now I'm on half the dosage I was on and the pain is making it harder to be brave--I fear I might not be strong enough to deal with the pain without gabapentin, since it does help me. But I'm determined to stick with the plan although I do feel I need some structure and may consult with a therapist. Thank you for listening and thank you especially to TG957. I watched the Sarno documentary "All the Rage" the other night and burst into tears when they interviewed a woman with CRPS who had a DRG implanted and then removed (her story was so quick and the only mention of CRPS in the documentary). If it wasn't for TG, that could have been me--a narrow escape from a very invasive treatment!
    1. persistant
      persistant
      Hi, I'm new here and wondered if there is a support forum for those diagnosed with CRPS? I'm also confused about status updates vs stories
      1. Andy Bayliss
        Andy Bayliss
        Hi persistant and Welcome! I don't often use this feature, and just saw your posting and your story. I hope you might try the Structured Education Program at the Wiki as a way to learn and post your progress. Also, you can make a new post of any kind, to say more about your situation or ask questions. I think you're in the right community here! Andy
        Feb 4, 2021
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  • My Story

    Gender:
    Female
    Introduction:
    I was diagnosed with CRPS and want to learn how to heal rather than just manage my pain.
    Hello, I discovered this website after reading TG957's success story describing recovery from CRPS on a CRPS forum. I had visited that forum only a few times and found it so depressing. There are very few success stories about CRPS--doctors told me it was incurable and that I would be on Gabapentin for the rest of my life. My CRPS is relatively mild and reading the horror stories on that forum made me so anxious. After reading TG's post there, I read Dr. Sarno's book as well as TG's book. I also started Alan's educational program. My history: I've had back issues since having my first child 37 years ago and had disc surgery just after the third was born 30 years ago. I heard of Dr. Sarno somewhere along the way but never read his book because I was convinced my problem was structural since most of my disc extruded during labor and delivery. Now I realize I have the classic TMS personality. I’ve struggled with anxiety and insomnia most of my life, even as a child. Since my CRPS symptoms began in November 2019, I've seen multiple doctors, several physical therapists, had injections, MRIs etc. I was diagnosed relatively quickly but because of my lumbar history, the PTs and physiatrist I saw all felt my foot pain was caused by lumbar stenosis. So I was never sure what was really causing the foot pain and I kept searching for answers. I finally reached full circle recently--I was told by a neurosurgeon that it was not related to my back, but was in fact CRPS. He recommended an implantable DRG simulator and I made an appointment at a pain clinic to find out more. I went back to the CRPS forum to research the stimulator and that is the day I found TG's story. I cancelled the appointment at the pain clinic and decided it was up to me to get better. I contacted my primary care physician for advice on weaning off Gabapentin and she gave me a five week schedule. The first two weeks went well and I was filled with hope. Now I'm on half the dosage I was on and the pain is making it harder to be brave--I fear I might not be strong enough to deal with the pain without gabapentin, since it does help me. But I'm determined to stick with the plan although I do feel I need some structure and may consult with a therapist. Thank you for listening and thank you especially to TG957. I watched the Sarno documentary "All the Rage" the other night and burst into tears when they interviewed a woman with CRPS who had a DRG implanted and then removed (her story was so quick and the only mention of CRPS in the documentary). If it wasn't for TG, that could have been me--a narrow escape from a very invasive treatment!