Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyChronicPainTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyChronicPainTeam Member asked a question 💭
Pueblo, CO

Been dealing with both for over 20 years. ...
We lose so many to suicide. ...because they cannot deal with the pain of CRPS....
The most painful disease known to man kind. .....
PLEASE help spread awareness of CRPS....
TYPE 1.. REFLEX SYMPATHETIC DYSTROPHY and TYPE 2...CAUSALGIA. ....THANK YOU. ...SPANKY ..

June 25, 2017
 · 
Reactions

Answer Summary

Members shared their deeply personal experiences living with CRPS (Complex Regional Pain Syndrome), with many describing how their condition... Read more

Members shared their deeply personal experiences living with CRPS (Complex Regional Pain Syndrome), with many describing how their condition began with injuries or surgeries and progressed from a single limb to affecting their entire body over many years. Several members offered practical strategies that have helped them manage this extremely painful condition, including spinal cord stimulators, low-dose ketamine infusions, sympathetic nerve blocks, Biere blocks, pain medications like Tramadol and fentanyl patches, and seeking care at specialized clinics that focus on rerouting nerve signals. A recurring theme was the community's fierce solidarity and mutual support, with members warning each other about treatments that worsened their condition (like nerve ablation), celebrating small victories like occasional pain-free days, and emphasizing the importance of finding doctors who truly understand CRPS while advocating for greater awareness of this devastating disease.

A MyChronicPainTeam Member

@A MyChronicPainTeam Member
I'm sorry dear. ..but CRPS can go full body...it eats your nerves. .bone. ..tissue. ..skin everything then in goes to your internal organs. ...
Crps is the most painful disorder known to mankind. ....
Look up the McGill pain scale used by doctors. .... it's 42 out of 50 ...more painful than cancer. ....
Please look up Rsdsa.com or Rsdhope.com

((((*hugs*)))) Spanky

June 28, 2017
A MyChronicPainTeam Member

Dear Wendy. ..
Mine it's Full body now going internal. ....it started by smashing the first 3 digits of my left hand with 30lbs of hydraulic pressure. .....then a nerve release in the left elbow. .....so I have both CRPS TYPES 1 &2.....
WITHIN A YEAR I WAS UPPER BODY. ....now it's been 28 yrs... FULL BODY IS HARD. ..
Spanky

June 25, 2017
A MyChronicPainTeam Member

Doesn't CRPS usually affect only 1 or 2 limbs? Fibromyalgia affects the entire body, and has an infinite number of issues/symptoms associated with it, which can often cause potentially harmful assumptions. Fibromyalgia also may tend to make other co-existing issues more challengin to treat.

June 28, 2017
A MyChronicPainTeam Member

@A MyChronicPainTeam Member.....
Wow.. I'm really happy for you...
I no longer have pain free days......only a lil less pain. ...
Use what works.........
Spanky

June 27, 2017
A MyChronicPainTeam Member

I also have CRPS. mine developed after surgery. It affected the leg in which I had the knee replaced. This year I had to have surgery on the other foot. CRPS followed .I now have it in both feet. I take Tramadol and have a device implanted which helps with the nerves in the legs. I can actually have days that can forget I hurt. Not many, but a few.

June 27, 2017

Related Questions

View All
A MyChronicPainTeam Member asked a question 💭
Katikati, New Zealand

A MyChronicPainTeam Member asked a question 💭
Rancho Cordova, CA

A MyChronicPainTeam Member asked a question 💭
Rancho Cordova, CA