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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Hello @paulieoneill4979, welcome. Feeling blank...boy, have I felt blank before. As a matter of fact, that feeling is what lead me to Connect. I'm so sorry you've ended up with CRPS after ankle surgery this past January. Your doctor seemed to diagnose CRPS rather quick which is good.

You may not know what Gabapentin is actually doing for you unless you were no longer taking it. I have to believe it's helping and perhaps your dose can increase. It sounds like you and your doctor have a solid plan to try injections and possibly ablations. Those treatments really do work for some folks so there is hope for you.

I truly understand how lost you feel and am sorry. I've fealt the same throughout my journey of chronic pain conditions when the worse types of nerve, muscle and joint pains overwhelmed me. Luckily you know what you have so you can tackle it head on, which you are doing.

How do you keep your mind distracted when your having pain flares? I put on a movie, music, or talk to someone in my family. Do you have a support system to help you through these difficult times?

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@rwinney

Hello @paulieoneill4979, welcome. Feeling blank...boy, have I felt blank before. As a matter of fact, that feeling is what lead me to Connect. I'm so sorry you've ended up with CRPS after ankle surgery this past January. Your doctor seemed to diagnose CRPS rather quick which is good.

You may not know what Gabapentin is actually doing for you unless you were no longer taking it. I have to believe it's helping and perhaps your dose can increase. It sounds like you and your doctor have a solid plan to try injections and possibly ablations. Those treatments really do work for some folks so there is hope for you.

I truly understand how lost you feel and am sorry. I've fealt the same throughout my journey of chronic pain conditions when the worse types of nerve, muscle and joint pains overwhelmed me. Luckily you know what you have so you can tackle it head on, which you are doing.

How do you keep your mind distracted when your having pain flares? I put on a movie, music, or talk to someone in my family. Do you have a support system to help you through these difficult times?

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Hi Rachel thanks for the response so good to know someone is out there yes I was lucky I guess to pay attention early on to my body and my team sent me for emg ncv testing and diagnosed it early on these injuries changed my life I take 1800mg of gabapentin and I believe it helps keep the rawrrrrrr pain down as for what I do to help the pain I have yet to figure that out fully a little music or a good show helps a bit I've recently started getting the burning in my right leg and hip which has kind of thrown me for a loop im going to do another emg to see if in fact the crps is or has been there as well the whole time I had a flare up today that had me in bed the whole day clamy hands even sound of door opening and closing had me agitated

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Oh and as of now I have a few family and friends that have been pretty supportive yet we are so in the dark about crps so it's been a roller coaster I've tried finding online groups or chats but hit a dead end so far on that a chat room would be awesome still searching for one

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@paulieoneill4979

Oh and as of now I have a few family and friends that have been pretty supportive yet we are so in the dark about crps so it's been a roller coaster I've tried finding online groups or chats but hit a dead end so far on that a chat room would be awesome still searching for one

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@paulieoneill4979 it is great to hear that you have support of some sort from some family and friends. I am glad you have joined Connect, an online community where you can lean on other members while learning from one another!

Your lack of sleep may be influencing your reduced interest in other things. Sleep really is such a fundamental aspect of overall health and mental health, especially when faced with chronic conditions such as what you are dealing with. That said, do you have a sleep routine that helps get you in the mood for sleep? What are your current sleeping struggles (i.e. falling asleep, staying asleep, both)?

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@paulieoneill4979

Oh and as of now I have a few family and friends that have been pretty supportive yet we are so in the dark about crps so it's been a roller coaster I've tried finding online groups or chats but hit a dead end so far on that a chat room would be awesome still searching for one

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Hi 2012 is how long I've been dealing with it you need help message me .

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@amandajro

@paulieoneill4979 it is great to hear that you have support of some sort from some family and friends. I am glad you have joined Connect, an online community where you can lean on other members while learning from one another!

Your lack of sleep may be influencing your reduced interest in other things. Sleep really is such a fundamental aspect of overall health and mental health, especially when faced with chronic conditions such as what you are dealing with. That said, do you have a sleep routine that helps get you in the mood for sleep? What are your current sleeping struggles (i.e. falling asleep, staying asleep, both)?

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Try my best to wind down early in the evening no TV no phone the main issue is the pain is so random but so very painful that I've had to start taking seroquel to sleep and even that I wake up in the middle of the Night

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@scarffy1

Hi 2012 is how long I've been dealing with it you need help message me .

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Wow since 2012 would love to talk about it and hear your journey right now I've had it diagnosed since April on top of the 2 injuries I've had plus this life has been very very different

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@paulieoneill4979

Hi Rachel thanks for the response so good to know someone is out there yes I was lucky I guess to pay attention early on to my body and my team sent me for emg ncv testing and diagnosed it early on these injuries changed my life I take 1800mg of gabapentin and I believe it helps keep the rawrrrrrr pain down as for what I do to help the pain I have yet to figure that out fully a little music or a good show helps a bit I've recently started getting the burning in my right leg and hip which has kind of thrown me for a loop im going to do another emg to see if in fact the crps is or has been there as well the whole time I had a flare up today that had me in bed the whole day clamy hands even sound of door opening and closing had me agitated

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Yes, @paulieoneill4979 I'm here and happy to help. I see my friend @johnbishop steered you towards CRPS discussions. I'm hoping you will connect with others that have CRPS and learn more about the condition and what tools they use to manage CRPS.

While this sudden onset of life change has thrown you through a loop, you can come out on the other side of that loop. Keep the faith, stay strong, have hope, think positive, use positive self-talk, and open your mind to learn as much as you can about your condition. I know this sounds like a lot to ask, especially this early in your journey, but I get a certain feel from you that you are a person who is strong and will persevere through what life throws at you. Am I right?

Handling pain and coming to terms with a chronic condition that may never go away is a daunting task and takes time. I like to say it takes "a village" if you will, to manage all that is involved from physical, emotional, behavioral and chemical. These 4 pillars are components that can help you manage going forward in the best way possible. But, with all that said, you my friend are going through a lot right now and must remember to take it one day at a time and give yourself grace. For me, sometimes it takes just getting through the next 5 minutes when flares are so intense.

I'm happy you have a good support system, that's important because you can't be expected to go through this alone. I enlisted the help of a cognitive behavioral therapist and a psychologist at various times when I knew I needed extra help to learn how to manage new feelings, emotions and behaviors.

Agitated, yes, I know that feeling. Your body is having tantrums and it stems from your central nervous system gone mad. From my understanding, most CRPS is caused by damage to, or dysfunction of injured peripheral sensory neurons, which then has secondary effects on the spinal cord and brain. Causes include surgery, injury, heart attack, etc.

Have you become familiar with your condition? Here is helpful Mayo Clinic information about CRPS:

https://www.mayoclinic.org/diseases-conditions/crps-complex-regional-pain-syndrome/symptoms-causes/syc-20371151

So, what is on the agenda for today? Any fun or good distraction to keep you out of bed? Do you have pets, children or grandkids? Nature is my ally and I find peace being mindful in my yard or local park listening to the birds, dogs and children in the distance playing. Do you have a calming place to meditate and apply mindfulness for distraction?

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@paulieoneill4979

Wow since 2012 would love to talk about it and hear your journey right now I've had it diagnosed since April on top of the 2 injuries I've had plus this life has been very very different

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Yes if I could help youi would love too. Monday thru Friday I have plenty time to chat.

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