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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 💭
Rancho Cordova, CA
January 14, 2023
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Answer Summary

Members shared their deeply personal experiences living with Complex Regional Pain Syndrome, describing pain as feeling like burning, stinging... Read more

Members shared their deeply personal experiences living with Complex Regional Pain Syndrome, describing pain as feeling like burning, stinging bees, branding irons, or countless needles, with symptoms varying widely from person to person depending on whether they have Type 1 or Type 2. Several members offered practical treatment insights, including spinal cord stimulators, gabapentin, medical marijuana, physical therapy, nerve surgery, and acupuncture for burning mouth syndrome, with many emphasizing the critical importance of educating yourself about CRPS and working closely with a pain management specialist since there is no single diagnostic test. A recurring theme was the frustration of dealing with a misunderstood condition that doctors often knew little about, especially years ago when it was called RSD, and the shared determination to advocate for proper treatment while managing one of the most painful conditions known to medicine.

A MyChronicPainTeam Member

I also have type 2 with massive nerve damage. Mine is from my waist down both legs and feet. Started in 2007. Back then doctors knew very little about the disease. It was called RSD at that time. Pain is indescribable! Stimulators helps just a little and medical Marijuana helps me to get a few hrs sleep per night. Wouldn't wish this on my worst enemy.

January 14, 2023
A MyChronicPainTeam Member

Karen, talk to your Dr. about your symptoms and if they feel CRPS . it's a diagnosis of exclusion since there isn't any diagnostic test for this. Good luck

January 15, 2023
A MyChronicPainTeam Member

Yes, I have crps. It feels like trillions of bees singing, a hot branding iron, trillions & trillions of needles, hit hot skin, swelling.......

January 14, 2023
A MyChronicPainTeam Member

I have CRPS Type 2 in right leg. Diagnosed in March 2019.

The CRPS experience is unique to each person. There are varying degrees of CRPS.

Type 1 - no nerve injury (I was classified that for three years, then two injured nerves were found and fixed surgically).

Type 2 - nerve injury

It was also explained to me that it can be broken down by:

Definite - have all symptoms
Probable - have several symptoms (that's me)
Possible - have a couple

My CRPS experience includes: Allodynia, color change (red), tremors, Poor Thermoregulation, gut issues that are neuropathic in origin.

I don't talk about my pain. So I won't describe it

Treatments that helped me:
Physical Therapy
Spinal Cord Stimulator implant
Saphenous neurectomy
Gabapentin

Not sure if this helps or what you were looking for.

January 14, 2023
A MyChronicPainTeam Member

@A MyChronicPainTeam Member. That's very good advice. I've had CRPS since 2007 and back then most doctors had no idea what it was or how to treat it. People today need to educate themselves so doctors don't make their condition worse. Plus they should know the cost of treatment plans. Not any easy disease to deal with by any means. Be well.

Bob

January 25, 2023

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