CRPS - anyone suffering with complex regional pain syndrome

I come to you again for advice. First of all I'm glad to tell that I found a neurologist locally that is very familiar with CRPS and even though booked until December was alble to get me in 7/28 do to my condition. I have appointment with pain dr. this coming monday, He is not very good. Looking for new one but for now will have to do. I am currently on gabapentin 800mg 3 per day helps very little, and just started oxecodone 12.5 ER that is causes severe anxiety, have to get off. Upon reading others blogs many have had sucess with switching gabapitin to lyrica. My insurence will cover 82.5, 165 and 330 all ER. When others have made the switch to Lyrica what are overall comments, withdrall from gagapentin and do they need opiod with it? Thanks Darryl

@drg24242 Hello Darryl. Reading some of your posts brings me back to a time when I was trying many different treatments and medications for my chronic pain syndrome. I'm so sorry you are struggling with CRPS, but glad you came to Connect looking for support help.

I want to offer a little advice based on my experience and science. Thankfully, you are discontinuing oxycodone. Opiates are mostly reserved for post surgical patients for acute purposes, and cancer patients. They actually can cause hyperalgesia which induces pain, which is why I'm glad you are getting off yours. So many side effects and the body's addiction to a substance is never favorable. Kudos to you for seeing that.
Here's more on hyperalgesia in case you're interested:

- https://www.webmd.com/pain-management/what-is-hyperalgesia

It took me 3 years of being on opiates, failed procedures and getting nowhere in my chronic pain syndrome journey before realizing that less is more when it comes to meds, lifestyle change is imperative, and stress management along with coping mechanisms are key. I have Central Sensitization Syndrome, an umbrella to many diagnoses like CRPS, migraine, nerve dysfunction, POTS, post-COVID, etc. I eventually found hope and a self- management by attending Mayo's Pain Rehab Center.

It's great that you've found a local neurologist and have an appointment Monday with a pain doctor, these are all steps to take, but before you go, here's a link to Mayo Clinic's diagnosis and treatments for CRPS. It may be helpful to have a solid understanding of the comprehensive approach it takes to manage CRPS as a chronic pain syndrome so that you are prepared for your appointments.
https://www.mayoclinic.org/diseases-conditions/crps-complex-regional-pain-syndrome/diagnosis-treatment/drc-20371156
I hope this info helps you out with treatment ideas and knowledge. Knowledge is power, my friend. Best of luck at your appointments. Do you have questions prepared for your upcoming visits?

Hi Rachel. First of all I want to thank you for all the direction you gave me in your message. I spent over 3 hours going through your reccomended links. It has really helped me but at the same time taught me that I still have so much more to learn, but I can, it will just take time.
Let me share a little bit about myself. I am 68. I live alone. I lost my wife 4 years ago to cancer. I have no living relatives. On 2/14/21 I fell down 10 steps outside on ice and shattered my elbow. I had 2nd surgury on elbow 2/19/22. Diagnosted with CRPD on 4/1/22. Since then things have been a struggle but since I discovered Connect in mid June I have fould that I am not alone. With people like you out there, I never will be. Thank's again! Darryl

Hi Rachel. First of all I want to thank you for all the direction you gave me in your message. I spent over 3 hours going through your reccomended links. It has really helped me but at the same time taught me that I still have so much more to learn, but I can, it will just take time.
Let me share a little bit about myself. I am 68. I live alone. I lost my wife 4 years ago to cancer. I have no living relatives. On 2/14/21 I fell down 10 steps outside on ice and shattered my elbow. I had 2nd surgury on elbow 2/19/22. Diagnosted with CRPD on 4/1/22. Since then things have been a struggle but since I discovered Connect in mid June I have fould that I am not alone. With people like you out there, I never will be. Thank's again! Darryl

@drg24242

@drg24242 Hey, Darryl. You are very welcome. Thank you for sharing more about yourself and your circumstances. I'm so sorry to hear you lost your wife 4 years ago. I can't imagine how difficult that has been for you.

No, Darryl, you are not alone and I think it's great that you are on Connect. May I ask how you found us and what ultimately lead you here? Was it to learn more about CRPS? That's what lead me to Connect, researching my condition, and along the way I found friends, too.

You said something so important and that is that "you can" learn. No matter the time it takes, please know that your mind being open in the first commendable step. It must be tough dealing with doctors and decision making alone. May I ask how you do going to doctor appointments? If you're like me and forget half of what doctors say, do you bring a notebook with your questions and to write down answers?

I come to you again for advice. First of all I'm glad to tell that I found a neurologist locally that is very familiar with CRPS and even though booked until December was alble to get me in 7/28 do to my condition. I have appointment with pain dr. this coming monday, He is not very good. Looking for new one but for now will have to do. I am currently on gabapentin 800mg 3 per day helps very little, and just started oxecodone 12.5 ER that is causes severe anxiety, have to get off. Upon reading others blogs many have had sucess with switching gabapitin to lyrica. My insurence will cover 82.5, 165 and 330 all ER. When others have made the switch to Lyrica what are overall comments, withdrall from gagapentin and do they need opiod with it? Thanks Darryl

Hi Rachel. In answer about how I found Connect. I , like you , doing research to educate and trying to get help for my CRPD. Now that my eye slight is slightly impaired and do not fell safe drivig I get to my dr. appointments that are more than 4-5 miles away. I take what is called Acess. It is a service in Pa. , for the elderly or disabled, thay will send a little bus to your home at a minimal cost. Ya, sometimes they get you there 1-2 hours early and you have to wait for them to pick you up for an hour but it's butter than getting in a wreck and hurting myself and others. I think I'm prepared for the appointments this week. All my questions that I have thought of are written in a note book, leaving enough room for more that I will think of during night. Darryl

@drg24242 Hi there, how'd your appointment with the pain doctor go yesterday?

Hi Rachel, First of all I brought up my question about switching from Gabapentan to Lyrica. His reponse was that he would not do it because I am a type 1 diabetic and Lyrica may not be good idea. The second purpose for this appointment was to get off opiods that I have been on for a good while. He told me thatsince I have been on oxycodone and even stronger opiods for quite a while he concern was that I may suffer severe withdrawl. So what we are doing is that he would drop my down to a pain killer called Narco for the next 30 days then see how my pain is. I think it might be a good idea. No more doctor's until a new neurogist on the 28th. Talk soon, Darryl