Want to talk with others. Have you found relief from CRPS?

Posted by mam14 @mam14, Feb 4, 2019

I was diagnosed with complex regional pain syndrome a year ago. It has since spread and I am experiencing a decline in my health at an alarming rate. I am hoping to talk to others that may have found relief.

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

@smallengineguy

I am currently working with a pain management center at NURA pain management in Edina. We are exploring otions... already had the nerve block injections...my body did not like it and had seizures and confulsions.doc felt the meds may have triggered them. I am currently taking pain meds to help. I did send a request to Mayo clinic for a second opinion and hope to hear from them midweek .I feel any information is worth it and it helps knowing that I am definitely not ALONE!!!

Jump to this post

@smallengineguy You are definitely not alone! Here's some more information you might find helpful on Mayo Clinic's Pain Rehabilitation Center.

Pain Rehabilitation Center - Overview - Mayo Clinic: https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

Patient story - Pain Rehabilitation Center Offers Freedom From Debilitating Symptoms: https://sharing.mayoclinic.org/2020/03/11/pain-rehabilitation-center-offers-freedom-from-debilitating-symptoms/

REPLY
@johnbishop

@smallengineguy You are definitely not alone! Here's some more information you might find helpful on Mayo Clinic's Pain Rehabilitation Center.

Pain Rehabilitation Center - Overview - Mayo Clinic: https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

Patient story - Pain Rehabilitation Center Offers Freedom From Debilitating Symptoms: https://sharing.mayoclinic.org/2020/03/11/pain-rehabilitation-center-offers-freedom-from-debilitating-symptoms/

Jump to this post

Thank you John for all your support. This is a new experience for me and it's a little scary. I'm 57 and with 4 granddaughters who mean the world to me I am trying to stay active in their lives but it's been HARD...VERY HARD

REPLY
@smallengineguy

Hi everyone I recently had been diagnosed with complex regional pain syndrome after undergoing a complete knee replacement surgery and would like to know if anyone else is familiar with this issue. This is a pain in my leg like I've never experienced before in my life

Jump to this post

Dear smallengineguy, I am so sorry to hear this! CRS is supposed to be one of the most painful conditions in the world. I will be upholding you in prayer. Warmest regards, Sunny flower. 🙏😥

REPLY

Thank you very much sunny flower. I've been looking for a board like this where we can share our own stories and hope to find answers but most of all.....support. I feel we all need each other during these most difficult times. I will be asking Mayo clinic for a second opinion just to make sure but I feel ive all ready have my answers (albeit difficult) to comprehend and accept right now. I pray the other doctors are wrong but 3 different docs???

REPLY
@smallengineguy

Thank you John for all your support. This is a new experience for me and it's a little scary. I'm 57 and with 4 granddaughters who mean the world to me I am trying to stay active in their lives but it's been HARD...VERY HARD

Jump to this post

Dearest smallengineguy, I really do get it. My whole life all I ever wanted to do was have kids and be a grandmother. I am have so many diseases and conditions, quite a few that are extremely painful in nature, that limites me greatly from being the Grammy that I want to be. I do grieve over this loss in my life however, at the same time, I am acutely aware of my innumerable blessings that surround me. It is really difficult to understand how, at the same time, I can be begging the Lord to take me now because I have reached my human tolerance threshold, and yet, at the same time, telling Him that I want His will for my life because I know that ultimately that is where I will have the most peace.

Were it not my intimate relationship with our living God oh, I would never have made it this far.

I wish for you the same comfort and the peace of God through Christ which surpasses all human understanding, Philippians 4:7, that keeps me going. And also knowing and understanding his plan for my temporary life here: Psalm 139 ;16 "Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be", and eternal life, and try to keep focused on His promises which never fail.
No matter how bad it gets and believe me it does as you well know, I never lose the hope and assurance within me, Hebrews 11:1 "Now faith is being sure of what we hope for and certain of what we do not see"

I care deeply and hope and pray you will find Solace for your soul. Fondly, Sunny flower. 🙏😊 @johnbishop

REPLY

AMEN.....and Thank you..
we ALL do need each other

REPLY

This is a real condition, in addition to being very painful. I assume you might be on pain medications? I found activity is the best, but it is really hard to be active when your in so much pain you have tears streeming down your face right? So, these are just suggestions that has worked on some, may or may not work for you. Use a tense unit, it stimulates the nerves to get blood flow, use it day and nightly, since they have a small one you can hook on your trousers. It releaves the pain temporarily. But the more you use it the better it gets. This is a condition that travels, it started in my arm, and moved down the whole left side. So of course, I was not very mobile during that time, only in a wheelchair. Goodnews, today I am walking and am very grateful to be out of a wheelchair. So has your condition traveled to other areas? If so where? I think you might find some releif in the tense unit.

REPLY

Thank you csteele. I'm currently working with a pain management center at nura pain management. The tense device is in my future plans. I've already had 2 nerve block injections which my body didn't like and went into seizures. tried taking gabapentin...didnt like that either. Also tried time release patches...struck out with that as well. So far the pain is only on.my lower right leg. I've done alot of research and found that taken high doses of vitamin C has a chance of it not spreading so I started taken 500 mlg...time will tell. This is very painful and yes I am taking pain meds along with tylenol extra strength 500 mlg and it does seem to take the edge off for a few hours. this something I would never want anyone to experience

REPLY
@smallengineguy

Thank you csteele. I'm currently working with a pain management center at nura pain management. The tense device is in my future plans. I've already had 2 nerve block injections which my body didn't like and went into seizures. tried taking gabapentin...didnt like that either. Also tried time release patches...struck out with that as well. So far the pain is only on.my lower right leg. I've done alot of research and found that taken high doses of vitamin C has a chance of it not spreading so I started taken 500 mlg...time will tell. This is very painful and yes I am taking pain meds along with tylenol extra strength 500 mlg and it does seem to take the edge off for a few hours. this something I would never want anyone to experience

Jump to this post

Hello smallengineguy, may I ask what medication was in the time released patches? I use prescription 5% Lidocaine patches for my back pain. They work pretty well but after so many months they seem to lose some of their effect. I also use OTC liquid 4% Lidocaine and swab it on my knees w/ a Q-Tip. It's weired stuff. I think it works but has a sensation of it's own. My knees burn and sting worse than the rest of my body which is bad enough! I've had 4 L-spine injections without incident. The first 3 didn't work so I've had 3 surgeries since. My 4th injection was 2 weeks ago. No problems but no changes. I really hope you can find relief!!!! I'm so sorry to hear about your pain! I know it only too well! Many blessings and prayers, Sunnyflower

REPLY
@csteel

This is a real condition, in addition to being very painful. I assume you might be on pain medications? I found activity is the best, but it is really hard to be active when your in so much pain you have tears streeming down your face right? So, these are just suggestions that has worked on some, may or may not work for you. Use a tense unit, it stimulates the nerves to get blood flow, use it day and nightly, since they have a small one you can hook on your trousers. It releaves the pain temporarily. But the more you use it the better it gets. This is a condition that travels, it started in my arm, and moved down the whole left side. So of course, I was not very mobile during that time, only in a wheelchair. Goodnews, today I am walking and am very grateful to be out of a wheelchair. So has your condition traveled to other areas? If so where? I think you might find some releif in the tense unit.

Jump to this post

Hello csteel, me again. I have and Empi unit that is like a Tens but it's a cross-current. Hope I got that correct. That's the only difference. They cross the wires. It's supposed to work better. Here is the main Google page so you could select your choice of different web sites. My physical therapist had me get it. I think it was covered by my insurance somewhat. All the best, Sunnyflower https://www.google.com/search?q=empi+electrical+stimulation+unit&rlz=1C1CHBD_enUS804US804&oq=Empi+electri&aqs=chrome.1.0l3j69i57j0l4.11901j0j7&sourceid=chrome&ie=UTF-8

REPLY
Please sign in or register to post a reply.