1. < Chronic Pain

Complex regional pain syndrome or reflex sympathetic dystrophy

Posted by oldnana @oldnana, Mar 22, 2016

After knee replacement, I developed RSD (reflex sympathetic dystrophy). I have had severe pain in my legs for a year and half. Does anyone have suggestion as to how I may control this disease

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

traceyk23 | @traceyk23 | Sep 26, 2023

Hi I am new to this forum. My daughter was recently diagnosed with CRPS. She had an injury to her foot, slight sprain, and since then she has not been able to put her foot to the ground. We cannot touch it or work on it. She is in a walking boot which helps cushion her foot to give her the confidence to put a little pressure on it so she can walk. She does physio every 2 weeks and swimming each week but the pain has not subsided. Our doctor also diagnosed her with severe anxiety a few weeks before her injury and he says that it can affect her pain tolerance as well. Has anyone found a connection between anxiety and CRPS? Also she got laryngitis 3 weeks ago and has not been able to speak since. She has finished a course of antibiotics but it didn't help. Has anyone found their ability to heal quickly has gone? She is only 14 and I hate to think of her suffering so badly every time something happens. She also hit the top of her pinky finger a week ago and it hasn't stopped throbbing, it should've felt better after a day or two. I am feeling very lost as our doctor doesn't know much or seem to have any helpful information on this disease.
Any advice or help would be greatly appreciated. Thanks

REPLY
3 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 26, 2023
In reply to @traceyk23 "Hi I am new to this forum. My daughter was recently diagnosed with CRPS. She had..." + (show)
@traceyk23

Hi I am new to this forum. My daughter was recently diagnosed with CRPS. She had an injury to her foot, slight sprain, and since then she has not been able to put her foot to the ground. We cannot touch it or work on it. She is in a walking boot which helps cushion her foot to give her the confidence to put a little pressure on it so she can walk. She does physio every 2 weeks and swimming each week but the pain has not subsided. Our doctor also diagnosed her with severe anxiety a few weeks before her injury and he says that it can affect her pain tolerance as well. Has anyone found a connection between anxiety and CRPS? Also she got laryngitis 3 weeks ago and has not been able to speak since. She has finished a course of antibiotics but it didn't help. Has anyone found their ability to heal quickly has gone? She is only 14 and I hate to think of her suffering so badly every time something happens. She also hit the top of her pinky finger a week ago and it hasn't stopped throbbing, it should've felt better after a day or two. I am feeling very lost as our doctor doesn't know much or seem to have any helpful information on this disease.
Any advice or help would be greatly appreciated. Thanks

Jump to this post

Hi @traceyk23, welcome to Connect. I'm so sorry your daughter is having a difficult time since her ankle sprain and injury. That must be hard on both of you. Have you considered a second opinion since receiving a CRPS diagnosis?

Anxiety is a known factor in increasing symptoms/pain. How has your daughter been managing her anxiety? Does she work with a therapist?

REPLY
wrn | @wrn | Oct 2, 2023
In reply to @traceyk23 "Hi I am new to this forum. My daughter was recently diagnosed with CRPS. She had..." + (show)
@traceyk23

Hi I am new to this forum. My daughter was recently diagnosed with CRPS. She had an injury to her foot, slight sprain, and since then she has not been able to put her foot to the ground. We cannot touch it or work on it. She is in a walking boot which helps cushion her foot to give her the confidence to put a little pressure on it so she can walk. She does physio every 2 weeks and swimming each week but the pain has not subsided. Our doctor also diagnosed her with severe anxiety a few weeks before her injury and he says that it can affect her pain tolerance as well. Has anyone found a connection between anxiety and CRPS? Also she got laryngitis 3 weeks ago and has not been able to speak since. She has finished a course of antibiotics but it didn't help. Has anyone found their ability to heal quickly has gone? She is only 14 and I hate to think of her suffering so badly every time something happens. She also hit the top of her pinky finger a week ago and it hasn't stopped throbbing, it should've felt better after a day or two. I am feeling very lost as our doctor doesn't know much or seem to have any helpful information on this disease.
Any advice or help would be greatly appreciated. Thanks

Jump to this post

Hi @traceyk23, I am new to this group as well. My daughter was diagnosed with CRPS in her left foot in 2017, and experiences severe pain on and off. She was advised by her pain doctor to use a Tens unit. We found one on Amazon, and she uses that when her foot is flaring up. She also uses Lidocaine cream on it, especially at night. Try contrast foot soaks, too. I hope she gets some relief.

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 2, 2023
In reply to @wrn "Hi @traceyk23, I am new to this group as well. My daughter was diagnosed with CRPS..." + (show)
@wrn

Hi @traceyk23, I am new to this group as well. My daughter was diagnosed with CRPS in her left foot in 2017, and experiences severe pain on and off. She was advised by her pain doctor to use a Tens unit. We found one on Amazon, and she uses that when her foot is flaring up. She also uses Lidocaine cream on it, especially at night. Try contrast foot soaks, too. I hope she gets some relief.

Jump to this post

@wrn Hello, welcome to Connect! Thanks for sharing helpful advice about your daughter's CRPS and what treatments help. Truly it is trial and error about what works and what doesn't. I'm happy that she finds relief during flares. May I ask how old your daughter is and how she manages life overall with CRPS?

REPLY
grannyzoo | @grannyzoo | Oct 3, 2023
In reply to @traceyk23 "Hi I am new to this forum. My daughter was recently diagnosed with CRPS. She had..." + (show)
@traceyk23

Hi I am new to this forum. My daughter was recently diagnosed with CRPS. She had an injury to her foot, slight sprain, and since then she has not been able to put her foot to the ground. We cannot touch it or work on it. She is in a walking boot which helps cushion her foot to give her the confidence to put a little pressure on it so she can walk. She does physio every 2 weeks and swimming each week but the pain has not subsided. Our doctor also diagnosed her with severe anxiety a few weeks before her injury and he says that it can affect her pain tolerance as well. Has anyone found a connection between anxiety and CRPS? Also she got laryngitis 3 weeks ago and has not been able to speak since. She has finished a course of antibiotics but it didn't help. Has anyone found their ability to heal quickly has gone? She is only 14 and I hate to think of her suffering so badly every time something happens. She also hit the top of her pinky finger a week ago and it hasn't stopped throbbing, it should've felt better after a day or two. I am feeling very lost as our doctor doesn't know much or seem to have any helpful information on this disease.
Any advice or help would be greatly appreciated. Thanks

Jump to this post

Hi Mom!

Please consider getting your daughter to an *anesthesiologist* THAT SPECIALIZES in pain management. Go through your teaching hospitals to find one if you are able. In NC I used UNC. Mayo Clinic might be able to help you find one in your area. (I called Mayo in Jacksonville, Fla and they were so kind as to direct me…I believe I used Nurse on call)

I strongly suggest you make sure that she stays away from red meats, processed foods, sugar alone or in anything, and she’s too young to be using alcohol but that is a no no. Diet plays a huge role in CRPS with me. Bottom line EAT HEALTHY FOODS. Don’t deviate from that diet.

I have a spinal cord implant that has helped me a lot. It’s not the answer for everyone. I also have had a Sprint implant (made in Ohio) in the back of my left leg that I have used for 90 days which was incredible!

Sleep is a must. Set a clock and go to bed at the same time and get up at the same time. Everyday.

Exercise is imperative. She must keep moving. Ask her to pay close attention to making sure she is not holding her breath when she moves about. Tell her to breathe in through her nose for three seconds and blow it out through her mouth for eight seconds. There’s a good chance she’s holding her breath from the pain. (I’m amazed at how often I do this! Standing. Going up steps. Getting out of bed…breathing in as my legs go over the side and blow out my breath while standing.) Breathing affects us in so many ways. I do breathing this breathing exercise 4-5 times a day. If she gets lights headed take a break…No passing out!

She must drink water.

Regarding her laryngitis; I strongly suggest you find an ENT, who will scope her throat, and make sure that this isn’t a nerve reaction. They might be able to teach her too. “ crack.” her larynx. I know it sounds bizarre but look into it. The Cleveland clinic was able to help me with that issue. The University of North Carolina helped me with my implant.

There have been great suggestions on this blog from other folks so find out how to go back and read them. One person had a place online to view and my apologies but I don’t recall it.

Stay positive. This disease is extremely painful but a positive attitude sure does help and it reduces anxiety. She always has a chance of waking up some morning and she’ll be better.

Praying for all of you.

REPLY
View MoreView Less
Please sign in or register to post a reply.