Not convinced of my diagnosis of CRPS Type II
 

I was diagnosed with CRPS Type II with Radial Neuropathy (or Radial Neuritis) in my right upper extremity about a year ago. Over the last 3 years I've had 4 surgeries, bilateral Carpal Tunnel Releases and bilateral Cubital Tunnel Releases with Ulnar Nerve Relocations. None of which alleviated my original complaint of burning at the base of my thumb on the back of my hand. I have multiple symptoms of CRPS, but I'm just not convinced. I've never experienced the red swollen, waxy white or sweaty hand or sores. I almost feel like I can't have CRPS since I don't have these key symptoms. I experience the burning pain, when I miss my meds, or my pain is triggered by something. My triggers for breakthrough pain are crazy!! If my hands are exposed to even the slightest bit of cold my fingertips burn painfully, if my hand or arm is touched by someone, if I get a hangnail, bruise, scrape or somehow injure my finger/hand or arm sometimes immediately or even hours later I get shooting pains along my arm and/or the base of my thumb burns (slow summation I guess it's called). Sometimes if the weather is about to change or if I'm getting sick, that too can trigger breakthrough pain. And if I'm experiencing pain it's a given that I can't fall asleep easily or stay asleep. I'm glad that I don't have the other symptoms, but it makes me question if I really have it. I live in a very rural area and I've only seen a few Dr.'s and I'm not sure they were/are qualified to give me that diagnosis. I guess I just want someone to tell me that I don't have CRPS, maybe I'm in denial, or maybe I'm just stuck in Stage I?? If anyone has insight when it comes to what I guess is "mild-moderate", please fill me in. Thanks!!

Hi skj1519,

Welcome - I hope we can be of some help, we'll try at least!

I just wanted to get the ball rolling by saying that you don't need to have all the listed symptoms of RSD/CRPS to be diagnosed with it, or indeed have it. Some literature discusses RSD patients who don't have pain even (go figure..) - but I just wanted to ask you what you think you have if it's not RSD.

With CRPS Type2, the new name for the old condition termed "Causalgia", there is clinical evidence of nerve damage, so I presume you have a documented case history. So..what symptoms do you have? And why don't you think it's RSD? Do you suspect a misdiagnosis and that you really have a different condition?

BTW, we have several RN's with the disease on this forum, but no doctors, we can only help with ideas and offer advice and suggestions - plus support if you need to rant and rave now and then, LOL.

Although I had a bright red puffy hand/wrist for the first 6 months or so, I don't have it any more. And I've never had sores, lesions, nail or hair changes or white waxy skin (? that's a new one one me, but I learn more every day :)). I have mild RSD at the moment.

The people on this forum have a wide variety of symptoms - many that are not listed on the clinical diagnostic evaluation list.

We also have several people who have come to RSD from the same RSI route as you, so I hope we can help you some.

As I said, glad you found us,
all the best!

I wanted to say hi. I was one of the people who gave you an answer on Yahoo earlier.

A few things...like everyone has said, not everyone gets all of the symptoms. It's true, a very tiny minority of people even have RSD without pain, but it's extremely rare (and kind of weird, if you think about the name complex regional pain syndrome). I've sometimes thought that my level of pain isn't as bad as other people have described too!

When I first got hurt, I had very few symptoms. Just some pain--not really that bad, but it seemed bad to me...I was 12 and had never experienced anything like that, and some allodynia. My leg would turn funny colors once in a while, like when I got out of the shower, it would be all red and the other one would be normal. A few years later, all that changed and I suddenly had the swelling, color changes, temperature changes, sweating, dystonia (especially dystonia) and nail growth changes that I had read about.

I'll tell you that until recently, I thought I was the only one to have only mild and intermittant symptoms in the beginning! I hope that if this is the case for you, you get the treatment you need now in order to never go through all of the other stuff.

I've heard of a few things that mimic RSD symptoms, and it's of course possible that one of those is the cause of your problems. But it's equally possible that it's RSD. I know that thoracic outlet syndrome has similar symptoms to RSD, and it has something to do with compression of nerves and blood vessels in the arm (I really know very little about this, to tell the truth). Also, I've heard of several people who had nerve/blood vessel entrapments, which can also mimic RSD. A person I know very well was almost diagnosed with what he called the "dreaded RSD" until they figured out that he had some nerves and blood vessels in his elbow that were compressed. He actually had to have an elbow replacement, and is now just fine. I'm very glad they figured it out for him!

I really hope this helps you, but I'm not sure it will. I also hope that whether it turns out that you have RSD or not, you find something that works!

-Betsy

I just wanted to add that now in the above section there are people posting pictures of their afflicted appendages. Not all have the things you list above (which is nice to see, cause I don't have ALL those symptoms either.)

Good luck and hugs.