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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.

suzzz9 | @suzzz9 | Jan 17 11:48am
In reply to @mam14 "I feel like the pain doctor that I am seeing is a waste of my time...." + (show)
@mam14

I feel like the pain doctor that I am seeing is a waste of my time. They have me taking cymbalta, lyrica, and norco. I am still in constant pain. I have asked if there are other options and was told no. I have a topical cream that helps my foot, which is where the CRPS started, but I can't rub it everywhere. I am just beginning this struggle. It sounds like you have experienced this for a long time.

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I've had CRPS coming on for seven months now yes pain management is a waste of time. It's a brain body syndrome that needs to be put in remission.
This book explains it all
"Stepping Out of the box" by
Dr Traci Patterson"
I am going to get neurological testing from the neuropsychology department

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kate2002 | @kate2002 | 5 days ago
In reply to @suzzz9 "I am suffering with it as well after knee/femur replacement My DO/Naturopath/homeopath dr recommended that I..." + (show)
@suzzz9

I am suffering with it as well after knee/femur replacement
My DO/Naturopath/homeopath dr recommended that I read "Stepping Out of the Box" book by Dr Traci Patterson
Extremely great detailed book about her journey
She is a Dr that traveled the world trying to get help with this syndrome . Nothing helped..Pharma, injections you name it.
She discusses many natural options accupuncture is the first and many more. She and many of her patients have have had results. It must be put into remission.
It is a brain /body syndrome. I am just at the beginning and accupuncture has helped so far but am now looking for a neuro psychologist. I notice that it fires up when i am stressed and fires up the neurons in my brain. It is very painful and after 6 months..yes it is spreading and frightening. I highly recommend reading this first to guide you to the answers. Most of her patients as well as her personally are in 7-10 years of remission. This is very painful and scary. Best of luck. She has many answers. Like i said, i am just beginning my journey and she clearly explains it ALL xo
Sincerely, Suzette

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I have had CRPS since 1999.
Please,please, please watch the lectures from Dr. Philip Getson. They might be from 5+ years old but helped me better than any other doctor who I have seen. Go to YOUTUBE and type in Dr. Philip Getson. He is my hero and I have never met him. Listen to everything he has to say. He explains CRPS better than anyone. I pray this helps you. You need to stay calm, stress increases our pain.

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kate2002 | @kate2002 | 5 days ago
In reply to @rsnowflake "I was diagnosed a little over a year ago. It started after a broken ankle. It..." + (show)
@rsnowflake

I was diagnosed a little over a year ago. It started after a broken ankle. It never really healed. Got purple and blue..really bizarre. Went back 2 orthopedic surgeon and he knew someone who studied crps for 2 years at Jefferson hospital in Philadelphia. I was very lucky 2 get diagnosed early, but it all went down hill after that. I got a nerve blocker on my leg. It worked great. Unfortunately it jumped quickly 2 my arm about a month after the nerve blocker. I didn't get that lucky that time....it got really bad and nothing worked. So I got a spinal implant. Sounds scary, but saved my hand!!! They put 2 leads in in case it jumped 2 my other arm...which it did. I use an ipod to control my pain day 2 day. Weather plays a big part of good and bad days, and so is stress. So try and find something just for u 2 do on those rough days..... really! I'm a 45 year young woman and I'm coloring to calm me down and I listen to music and tune out the pain. Would like to talk more I'm rsnowflake!

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I have had CRPS for 25 years. I have seen so many doctors, so many have told me there is nothing they can do for me and send me to another doctor. At my last pain clinic appointment they had me see a different doctor instead of my regular CPN. I walked into the room (an hour late) and she is frantically reading my chart. She then stated that my CRPS should be gone! That I would really benefit from going to a month long therapy in California, " it's very expensive but well worth it". She then stated that there is this doctor who knows a lot about CPRS I'll refer you to him. He was the doctor that referred me to her. I received the most help, learned more about our disease from a YOUTUBE video from Dr. Philip Getson. He was speaking at the RSDSA conventions. The videos are 5 + years old but changed my life. I'm 63 and went back to work full time, after I did what Dr. Getson said to do.
God Bless.
P.S. Find a functional medicine clinic. You need to have your hormones, vitamins, and minerals checked. No, our regular doctors no longer check for this unless we are having very pronounced side effects due to lack of a vitamin or mineral.

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