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

Interested in more discussions like this? Go to the Chronic Pain Support Group.

paulieoneill4979 | @paulieoneill4979 | Aug 21, 2022

In reply to @helent "What s CRPS" + (show)

Chronic regional pain syndrome

paulieoneill4979 | @paulieoneill4979 | Aug 21, 2022

In reply to @rwinney "Yes, @paulieoneill4979 I'm here and happy to help. I see my friend @johnbishop steered you towards..." + (show)

@rwinney

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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Thank you for the kind words yes I am a very strong minded person trying to navigate the Injuries themselves plus the crps has been quite a challenge I have been in therapy for a long time so that helps quite a bit as for agenda today driving from upstate ny to Brooklyn to handle so family stuff its fun being a passenger lol go for my nerve abalation Wednesday at nyu pain management facility elsewise going to try and relax today after this trip I am a big outdoor person so the Catskill mountains are my go to place for meditation and I have a 6 yr daughter as my main source of inspiration she comes to all my pt and ot appointments and cheers me on still have about a year of therapy to go till leg and hand injuries fully heal best they can lost alot of range of motion and muscle mass in leg and hand and well the crps makes it all worse but I am fighting another day and will continue too

paulieoneill4979 | @paulieoneill4979 | Aug 22, 2022

In reply to @scarffy1 "Yes if I could help youi would love too. Monday thru Friday I have plenty time..." + (show)

Sounds good would love to just hear a little about your journey I've had a rough go this year trimal ankle fracture distal radius fracture both right side then found out have spinal stenosis and serious nerve damage in neck which tuned everything Into crps after several emg ncv test the constant t burning and stabbing has been terrible even after 8 months of ot and pt I also.been on 1800 mg of gabapentin and I don't know.if it works or don't maybe just lessens the pain some days I'm going for a nerve abalation Wednesday praying it's gonna help

Rachel, Volunteer Mentor | @rwinney | Aug 22, 2022

In reply to @paulieoneill4979 "Thank you for the kind words yes I am a very strong minded person trying to..." + (show)

You're welcome @paulieoneill4979 you deserve kind words.
Hahaha - You found a positive and have enjoyed being a passenger on your trip to the city! Not a bad gig sometimes, huh?

Thank you for sharing that your 6 year old daughter has been your cheerleader and source of inspiration. That is special and I'm sure you very much appreciate her. My kids have done that for me since they were teens and have been my main source of inspiration. I always want to make them proud. On the flip side, I also was my mom's cheerleader when I was 8 after she had a motorcycle accident. Some of what you describe about your injuries take me back to my Mom. Both of her legs were broken and she had severe ankle crushing. She's been through it and is the strongest person I know. Having had that experience, I feel for you and your journey, and see that you are working hard through OT and PT and continuing to persevere on your path forward through rehabilitation and tackling CRPS.

Wow, NYU, great! It sounds like you'll be in good hands at NYU pain management for your radio frequency ablation. Have you already been there for diagnostic nerve block testing?

willows | @willows | Aug 22, 2022

I had CRPS as a result of an ankle injury sustained falling down a full flight of stairs in a summer salting rolling manner landing on my back on the hardwood floor. Ouch, that hurt! In a way I was fortunate, I could have killed myself and was super relieved that I only had the ankle injury that wouldn’t go away. Turns out I had developed CRPS. I couldn’t walk at all let alone put any weight at all on that ankle. What followed was one year of rehab at a physio clinic specialized in cprs. Rehab was a lot of work and it sometimes hurt. In the end, in about 18 months I was able to walk again without much pain. The rehab program was really what got me walking again as I graduated from wheel chair to crutches to a cane and finally no support aids. If you are able to tolerate a rehab program it might help you, depending on your condition.

rehab

paulieoneill4979 | @paulieoneill4979 | Aug 22, 2022

In reply to @rwinney "You're welcome @paulieoneill4979 you deserve kind words. Hahaha - You found a positive and have enjoyed..." + (show)

Thanks for the encouragement sounds like your mom's journey and everything you have been through have made you a great person so they decided not to do the nerve block testing due to the mri results and the emg ncv they know that the damaged nerve is in my neck and feel that the abalation is the route to go im also scheduled for an epidural in the neck as well so I pray they both help as they explained it to me nothing is guarenteed and that crps is such a serious condition that it really is going to be a trial by fire battle im hopeful and feel confident I have the best team in place to help me fight this I also have to go for another emg ncv for the leg because the same burning and throbbing stabbing pain is happening now there as well as my foot turning colors its such a mental battle very confusing

jillf3 | @jillf3 | Aug 24, 2022

Hi. I feel the very same way. I had a work related injury on 6/2/2020. My main injury was a severed radial nerve just above my left elbow. I developed wrist drop & had 2 surgeries. I’m taking many medications: Gabapentin, Hydrocodone, OxyContin, Cymbalta, Benadryl & other OTC medications. I was diagnosed with CRPS on 6/2022. I had my second EMG (finally) just yesterday, 8/23/2022. Of course, it is still abnormal. I’ve regained some motor function & strength in my left hand. I’m still in extreme pain, after 2 years. I don’t feel like myself. This has been all incumpassing & I just want to be out of pain!! I cry most days, I’m depressed & don’t feel much like doing anything. I’m having a hard time finding a Pain Medicine doctor, so that’s why I applied to Mayo Clinic.

paulieoneill4979 | @paulieoneill4979 | Aug 24, 2022

In reply to @jillf3 "Hi. I feel the very same way. I had a work related injury on 6/2/2020. My..." + (show)

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

Rachel, Volunteer Mentor | @rwinney | Aug 24, 2022

In reply to @jillf3 "Hi. I feel the very same way. I had a work related injury on 6/2/2020. My..." + (show)

@jillf3 Hi Jill. Oh dear, you have had a tough go at it, I'm sorry. Yes, you are on many medications which most likely are contributing to depression. After 2 years maybe finding a pain "medicine" doctor is not the move. I'm thinking you would greatly benefit from a pain "management" doctor. You certainly check a lot of boxes to be seen at Mayo Clinic's Pain Rehabilitation Center.

Awesome that you applied to Mayo Clinic! Are you hoping to be seen by a medical team for further evaluation? Have you been accepted yet?