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Shelbi

883d

Hey everyone! My name is Shelbi and I live in Texas. I developed CRPS type 2 after spinal cord damage done from cauda equina syndrome. I’m having trouble advocating for myself to get adequate pain relief. I’ve seen my doctor for years and I respect him a great deal, If you felt your doctor wasn’t listening to your needs would you get a second opinion? Possibly with a dr more familiar with CRPS?

Top reply
    • CRPS_RSD_Warrioress

      882d

      I’m also in Texas and have CRPS. Mine are now in my legs after a spread from my right wrist. I just left the doctor I’ve been with since 2016 bc he was doing the same thing and found a new doctor that offered new treatments. I’d love to connect!

    • CRPS_RSD_Warrioress

      882d

      I’m also in Texas and have CRPS. Mine are now in my legs after a spread from my right wrist. I just left the doctor I’ve been with since 2016 bc he was doing the same thing and found a new doctor that offered new treatments. I’d love to connect!

    • House_Mouse

      883d

      Google Mayo Clinic pain rehabilitation. They use a whole body/mind health program that includes yoga, meditation,physical therapy, group therapy etc. The program is 3 weeks mon-fri then once a month you check in for maintenance. There are also YouTube videos that explain it.

    • Shelbi

      883d

      Thank you so much for the reply. I think I needed to hear that getting a second opinion wasn’t a bad idea. I’ve tried everything he’s suggested like a spinal cord stimulator, so many injections I’ve lost count and he just says he doesn’t want to adjust my medications until we try x y z and never helps. My pain is still hovering around a 7 most days. I do PT regularly but insurance will only pay for so many sessions. Thank you! I’ll check out Mayo Clinic. I’m in Texas, but at this point I need to stop and managed spread and I’ve heard you do that by getting the disease under control best you can! My CRPS primarily effects my left leg from my mid thigh down, an area on my lower back and then my right thigh and right foot. So it’s not as bad as some peoples but it started off with just my left foot so I need to get this spread controlled.

    • House_Mouse

      883d

      Hi! I also developed CRPS after nerve damage. Luckily for me it only affects my right foot/ankle/lower leg. I would suggest getting a second opinion. If you’re not already, I also suggest joining CRPS groups on Facebook. There are a lot of people that can help you find a doctor in your area that can help. It’s really hard to get good care. No matter how much you like and respect your current doctor, if you’re not getting the care/pain management that you need you should find someone else. I’m not sure where you live, but Mayo Clinic has a great pain management team. They’ve helped me a lot!

☝ 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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