1. < Chronic Pain

Complex regional pain syndrome (CRPS) and feeling blank

Posted by paulieoneill4979 @paulieoneill4979, Aug 20, 2022

Hey everyone was diagnosed with crps in April 2022 after a trimalleolar ankle fracture and distal radius fracture Jan 2 2022 I have been taking gabapentin 1800mg a day and I feel like it's done nothing this condition is absolutely the worst thing I've ever experienced I cant sleep I don't have any interest in anything most days and the rare day I have a but of energy it's gets zapped pretty quick I have burning in both legs lower back and whole arm to neck scheduled for nerve abalation and epidural in a few weeks I just want to see if anyone here is going through this o am so lost right now

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lovedbygod | @lovedbygod | Sep 1, 2022
In reply to @johnbishop "Welcome @lovedbygod, Thank you for sharing the resource you have found so much help from. I..." + (show)
@johnbishop

Welcome @lovedbygod, Thank you for sharing the resource you have found so much help from.
I thought I would share the link to the RSDSA website for you since new members are not able to post links for a short period of time to prevent spammers from posting advertisements.

-- Reflex Sympathetic Dystrophy Syndrome Association (RSDSA):
https://rsds.org/
Are you able to share a little more about the type of help you received from the RSDSA website?

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They have a news letter that is inspiring and also a FB interview with different doctors that is live and can be sent to your full screen TV.
I have been blessed with doctors that are educated concerning CRPS/RSD. Most orthopedics and Podiatrist are.

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jillf3 | @jillf3 | Sep 7, 2022
In reply to @rwinney "@jillf3 Yayyy!!! That is great news. So happy for you! Which Mayo will you be attending?" + (show)
@rwinney

@jillf3 Yayyy!!! That is great news. So happy for you! Which Mayo will you be attending?

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I will be going to Rochester, MN. My appointment was moved up to 9/22…Yay!!

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1 reply
jillf3 | @jillf3 | Sep 7, 2022
In reply to @paulieoneill4979 "Hang in I truly know the feeling underwent a nerve abalation in my neck today I'm..." + (show)
@paulieoneill4979

Hang in I truly know the feeling underwent a nerve abalation in my neck today I'm so out of it won't know if it's the answer for a few weeks when I go back for epidural in neck as well but I'm glad to be in the care of the nyu pain management team and truly keeping my fingers crossed this will atleat aide in the giving me some pain relief having crps is and has been the most difficult thing I've ever faced it came on so.fast after these injuries prayers and hugs for you on your day to day battles

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Thank you so much. I’m looking forward to finally going to Mayo. I hope for the best to you!

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Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 7, 2022
In reply to @paulieoneill4979 "Wondering what level of anxiety depression and anger has come about for those of you who..." + (show)
@paulieoneill4979

Wondering what level of anxiety depression and anger has come about for those of you who have crps lately I have been very down no matter how much I talk to anyone my anger has been on the side of being annoyed by just about anything lately I feel like the constant pain is affecting my brain somehow because of all the nerve issues I try hard to keep my happiness and spread it but lately its gone and I just wonder why this is all happening

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Hello @paulieoneill4979 How have you been doing since we last connected and you made this post?

I can only speak for myself regarding your questions about anger, anxiety and depression. You are not alone, my friend. When I was in the thick of major life changes due to evolving disabilities, I went through about 3 years of these emotions among many others. Think about what it is that you're actually dealing with and going through, it's not easy. Noone expects you to be the hero and handle it with ease all the time, you are bound to have emotionally distressed days and that's ok.

Cognitive behavioral therapy helped me sort through piles of emotions from anger to loss and even jealousy. It provided tools for stress relief and coping mechanisms. I tried to handle things on my own for far too long and it made matters worse, not only on myself but my family too.

Journaling is a great tool to get those emotions out of your head and on to paper. Have you ever tried journaling?

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2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 7, 2022
In reply to @jillf3 "I will be going to Rochester, MN. My appointment was moved up to 9/22…Yay!!" + (show)
@jillf3

I will be going to Rochester, MN. My appointment was moved up to 9/22…Yay!!

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What?! 9/22 🤩 That's awesome!!
Good things happen on that day (it's my son's birthday) and has always been lucky for us. It's right around the corner now. Good for you. I can't wait to hear back on how things go. Positive vibes coming your way...

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1 reply
paulieoneill4979 | @paulieoneill4979 | Sep 7, 2022
In reply to @rwinney "Hello @paulieoneill4979 How have you been doing since we last connected and you made this post?..." + (show)
@rwinney

Hello @paulieoneill4979 How have you been doing since we last connected and you made this post?

I can only speak for myself regarding your questions about anger, anxiety and depression. You are not alone, my friend. When I was in the thick of major life changes due to evolving disabilities, I went through about 3 years of these emotions among many others. Think about what it is that you're actually dealing with and going through, it's not easy. Noone expects you to be the hero and handle it with ease all the time, you are bound to have emotionally distressed days and that's ok.

Cognitive behavioral therapy helped me sort through piles of emotions from anger to loss and even jealousy. It provided tools for stress relief and coping mechanisms. I tried to handle things on my own for far too long and it made matters worse, not only on myself but my family too.

Journaling is a great tool to get those emotions out of your head and on to paper. Have you ever tried journaling?

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Hey thanks for reaching out I have been pretty much in pain for the last 4 days as I've been going through a crps flare up I seen my pain management team today and got another shot as the 1st one did nothing several weeks back feel a whole lot wiped out today

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1 reply
gcranor | @gcranor | Sep 8, 2022
In reply to @rwinney "Hello @paulieoneill4979 How have you been doing since we last connected and you made this post?..." + (show)
@rwinney

Hello @paulieoneill4979 How have you been doing since we last connected and you made this post?

I can only speak for myself regarding your questions about anger, anxiety and depression. You are not alone, my friend. When I was in the thick of major life changes due to evolving disabilities, I went through about 3 years of these emotions among many others. Think about what it is that you're actually dealing with and going through, it's not easy. Noone expects you to be the hero and handle it with ease all the time, you are bound to have emotionally distressed days and that's ok.

Cognitive behavioral therapy helped me sort through piles of emotions from anger to loss and even jealousy. It provided tools for stress relief and coping mechanisms. I tried to handle things on my own for far too long and it made matters worse, not only on myself but my family too.

Journaling is a great tool to get those emotions out of your head and on to paper. Have you ever tried journaling?

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I start to video journal since my memory loss has taken my ability to write; the problem is the are not private my wife could hear me and would get mad at my emotions and thoughts so I stop the vide journal. The video journal was going to be use for me to look back at my life and create new memories of what I have accomplished after this disease started.

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 8, 2022
In reply to @paulieoneill4979 "Hey thanks for reaching out I have been pretty much in pain for the last 4..." + (show)
@paulieoneill4979

Hey thanks for reaching out I have been pretty much in pain for the last 4 days as I've been going through a crps flare up I seen my pain management team today and got another shot as the 1st one did nothing several weeks back feel a whole lot wiped out today

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I hope the next shot gives you better relief.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 8, 2022
In reply to @gcranor "I start to video journal since my memory loss has taken my ability to write; the..." + (show)
@gcranor

I start to video journal since my memory loss has taken my ability to write; the problem is the are not private my wife could hear me and would get mad at my emotions and thoughts so I stop the vide journal. The video journal was going to be use for me to look back at my life and create new memories of what I have accomplished after this disease started.

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@gcranor Hi there - I think video journaling is a wonderful idea, especially for memory loss. Understandably it's not as private when your wife can hear and take offense. Does asking her for privacy not work? Is she ever out of the house for you to have privacy? Are you able to go outside and video journal, perhaps on a walk in a quiet space or in your yard or a park?

Do you have CRPS as well @gcranor? How you do you handle your flares?

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jillf3 | @jillf3 | Sep 8, 2022
In reply to @rwinney "What?! 9/22 🤩 That's awesome!! Good things happen on that day (it's my son's birthday) and..." + (show)
@rwinney

What?! 9/22 🤩 That's awesome!!
Good things happen on that day (it's my son's birthday) and has always been lucky for us. It's right around the corner now. Good for you. I can't wait to hear back on how things go. Positive vibes coming your way...

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Aww, thank you!! And Happy Birthday to your son. I’m trying to stay positive 🙂

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