Complex Regional Pain Syndrome

I had similar results. Four days with not an ounce of relief. You are right. Very expensive, especially since it is all out-of-pocket. I asked them why I didn't get ANY relief. Hemmed and hawed about neuropathy vs neuralgia. I'm still looking for someone who got significant relief. Lots of patient testimonials but I'm not totally convinced.

Have you tried any DRG implants? My doctor put in a DRG implant from Abbott. This was about 5 years ago as I got the CRPS from a bunion surgery that afterward, I changed my gate and tore the nerve that runs at the bottom of your foot. I have been taking tramadol and gabapentin. 50 mg tramadol every 2.5 hrs and 600 gaba. 3 times a day along with 300 mg gaba. I will tell you over the past 7 yrs I have had times of relief and then times when the DRG did not work. A year ago, we tried a Nalu peripheral nerve stimulator. It has been off and on with relief. I have been on the tramadol so long, I have become drug tolerant to it. We are trying to figure out how to move forward. Mayo has a Comprehensive Pain Rehabilitation Center that is 16 days and I am looking into that. I have questions first for them but alot of insurance companies cover the days you are there..but not the room and meals. You always have to have hope and alternatives.

It is something different to try. My insurance paid for it so I did not mind but I guess I can say it helps sometimes and sometimes it does not. There are 5 different programs with settings. You can use all 5 at the same time where it goes 2 minutes on each program and continues until you change it or turn it off....or you can leave it on 1 program all day. The problem is all of the variables.....which one to change....which one to leave....to turn it up or down....hmmmm

As you can see, I'm not sure I would pay out of pocket. Sorry.

Makes sense, I appreciate your honest review. Thank you! I too am not sure I want to pay over $20,000 for it to "maybe" work!

If your insurance paid for it, you could do a trial where the leads, etc are not under the skin yet. I can only say, I only tried it as the Abbott DRG really was no longer working. I believe you have to keep trying other possibilities as the only other option is stronger meds...which after a period of time, your body gets used to. I am going to try the Mayo Chronic Pain rehabilitation center soon. It becomes more difficult time goes on but there are always new options.

Yes, my insurance won't even let me do the trial! However, they are going to pay for me to go to multiple trips to the Mayo Clinic for tests and a Qutenza patch for temporary pain relief. They probably more than paid for the device five times with all of that it makes no sense 🙄

Distal Radius Fracture after fall 3 wks ago. Diagnosed with Complex Regional Pain Syndrome??? Looking for advice

3 weeks ago, I fractured my left wrist after a fall. Diagnosed with distal radius fracture. For the first six days, I was managing well. However, on the seventh day, I developed severe pain specifically along the ulnar side of my wrist, radiating up to the elbow. I had a second X-ray done, which showed no change in the original fracture.

Since then, I have been unable to move my hand properly or rotate my forearm. Based on the symptoms, I began to suspect a TFCC tear, DRUJ injury, or possible ulnar impaction syndrome, as these conditions are known to not appear on standard X-rays and typically require CT or MRI for accurate diagnosis.

At my follow-up at the fracture clinic yesterday, I raised these concerns, but the consultant declined to refer me for any advanced imaging (CT or MRI). Instead, I was diagnosed with Complex Regional Pain Syndrome (CRPS).

My current symptoms include:
Severe pain localised to the ulnar bone (not the radius), extending toward the elbow
Discolouration of the hand and fingers
Mild swelling
Limited ability to rotate wrist

Notably, I do not experience:
Allodynia (Pain on light touch)
NO heat or Burning sensations
Sweating

My question is:
How can CRPS be diagnosed without first ruling out mechanical injuries like TFCC tears, DRUJ injuries, or ulnar impaction syndrome—especially when these conditions typically require CT or MRI for detection and are not visible on standard X-rays?
Any advice would be greatly appreciated.

Your story sounds a lot like mine. I had a distal radius fracture and then an ORIF with a bad outcome and all of the classic CRPS symptoms. After not being able to get additional imaging, I got a 2nd and then a 3rd opinion from surgeons from other clinics. Additional problems were identified via imaging and I had 2 more surgeries. I am well on my way to the resolution of my CRPS now. Had I stayed under the care of the first surgeon, I would be considered permanently disabled. CRPS is a diagnosis for a constellation of symptoms that many of us share and for which they can't find a cause or determine a resolution. But there is always an underlying reason and your chances of having that reason identified go up considerably if you seek out additional medical opinions. If you'd like to chat further, you're welcome to DM me. Whatever you do, don't give up!

I'm trying the Qutenza Patches. I did not get much relief after the first application (I'm scheduled for 3). did it help you and if so how many times did you get them?

Hi Geronimo,
Thank you so much for your reply — I can’t believe how alike our stories are. It's really encouraged me to seek a second opinion. I actually tried to send you a direct message but couldn’t figure out how to do it.

I wanted to ask: do you think you have CRPS, or were your symptoms more related to the initial fracture and the surgery? How are you feeling now?

I worry that doctors can be quick to give a diagnosis without taking the time to thoroughly investigate things. I really appreciate hearing your experience. Looking forward to your reply.