Hi

I have a silly question. How do I know if I have CRPS I or II?

Mine developed following surgery to repair torn cartilage in my wrist.

Sorry for such a noob question.


Kim

Not a silly question at all, but both types of CRPS are treated in the same way for most purposes.

As far as I understand it, Type 1 is when there is no specific nerve damage, ie the CRPS develops after a seemingly benign injury like a sprained ankle. Type II is when there has been known damage to a major nerve, ie during an operation.

The whole thing is confusing! Do as much reading as you can from major sites like the NHS, RSD Hope, etc, and you will find your way through the maze Ignore any references to stages though, the evidence for set stages has been disproved and it is acknowledged that there's wide variation in CRPS symptoms between different people...

Good luck!

Bram.

Hi Kim,

Me too. Woke up from back surgery with it. Yes, CRPS Type II there is nerve damage involvement. So I went looking for a quick statement of the two types and I found this just from the top couple of google results. I believe it to be fairly accurate, albeit kind of long and depressing to read. But here goes..

Complex regional pain syndrome
From Wikipedia, the free encyclopedia


Complex regional pain syndrome (CRPS), formerly reflex sympathetic dystrophy or causalgia, is a chronic systemic disease characterized by severe pain, swelling, and changes in the skin. CRPS is expected to worsen over time.[1] It often initially affects an arm or a leg and often spreads throughout the body; 92% of patients state that they have experienced a spread and 35% of patients report symptoms in their whole body.[2] Recent evidence has led to the conclusion that Complex Regional Pain Syndrome is a multifactorial disorder with clinical features of neurogenic inflammation, nociceptive sensitisation (which causes extreme sensitivity or allodynia), vasomotor dysfunction, and maladaptive neuroplasticity, generated by an aberrant response to tissue injury.[3] Treatment is complicated, involving drugs, physical therapy, psychologic treatments and neuromodulation and usually unsatisfactory, especially if begun late.[4]

CRPS is associated with dysregulation of the central nervous system[5] and autonomic nervous system resulting in multiple functional loss, impairment and disability. The International Association for the Study of Pain has proposed dividing CRPS into two types based on the presence of nerve lesion following the injury.

• Type I, formerly known as reflex sympathetic dystrophy (RSD), Sudeck's atrophy, reflex neurovascular dystrophy (RND), or algoneurodystrophy, does not have demonstrable nerve lesions. With the vast majority of patients diagnosed with CRPS being of this type, most of the literature thus refers to type I.

• Type II, formerly known as causalgia, has evidence of obvious nerve damage. Type II CRPS tends towards the more painful and difficult to control aspects of CRPS; type II scores 42 out of 50 on the McGill pain scale [6] (however there is seemingly little or no data pertaining to type I specifically here). In Type II the "cause" of the syndrome is the known or obvious nerve injury, although the cause of the mechanisms of CRPS Type II are as unknown as the mechanisms of Type I.


CRPS has the unfortunate honour of being described as being one of, if not the most painful long term condition, scoring 42 out of a possible 50 on the McGill pain scale, above such events as amputation and childbirth.[7] Lack of social awareness has inspired patients to campaign for more widespread knowledge of CRPS[8] and lack of clinical awareness has led to the creation of support groups seeking to self-educate with the latest research.[9]

Evidence suggests that CRPS has both physical and psychological factors. CRPS is said to cause physiological problems (rather than physiological problems causing CRPS); whilst "research does not reveal support for specific personality or psychopathology predictors of the condition" there are psychosocial factors to CRPS (such as reduced quality of life and impaired occupational function) and psychological problems (which include increased depression and anxiety).[10] Unsurprisingly, there is overwhelming evidence of limbic system involvement.[11] Sadly this very poor quality of life for some has led to high rates of depression and suicide among sufferers, which has motivated appeals for greater understanding. The AFPS leaflet on CRPS and prevention of suicide is available online here:.[12]

Daily vitamin C has been shown to reduce the chance for the occurrence of CRPS after an injury, leading to calls for greater awareness, especially in the emergency room setting.[13] In two placebo-controlled randomized clinical trials Zollinger et al. showed that patients who took 500 mg of vitamin C daily after a wrist fracture were less likely to incur the problem.[14] The cause of CRPS is currently unknown. Precipitating factors include injury and surgery, although there are documented cases that have no demonstrable injury to the original site.

With the growing body of evidence persuasively indicating the progressive and systemic implications of chronic CRPS,[15] there is concern that these patients may be erroneously also diagnosed with fibromyalgia. Fibromyalgia has a MPQ score of 35.7/50,[16] whereas CRPS averages a 42/50 MPQ. Chronic CRPS patients would react to the pressure points of the brachial plexus, the intercostobrachial (ICB) nerve and concomitant L5-S1, injury.[17] Similarly, when patients with multiple sclerosis were tested for CRPS, incidents of the disease was more than 50 times higher than in the average population.[18] This has led to calls for research and more understanding of chronic CRPS symptoms which may include muscle twitching and tremors, wobbliness, falling and visionary disturbances.[9]

As Complex Regional Pain syndrome is a systemic disease, any organ could potentially be affected.[19] There are many internal complications which are frequently not acknowledged, "CRPS affects the systems of: cognition; constitutional, cardiac, and respiratory complications; systemic autonomic dysregulation; neurogenic edema; musculoskeletal, endo-crine and dermatological manifestations; as well as urological and gastrointestinal function".[20]

Crumbs!

Haven't read that in a while, and I'd forgotten how negative it was!!

Try not to get bogged down in things like this too much. It's informative, but perhaps isn't good for day to day living

Don't forget that it is also possible for sufferers to go into remission for months or even years at a time...

Bram.

Thanks Bram and Vrae. I wasn't sure that mine having developed after surgery necessarily meant there was nerve damage from the surgery and thus it is type II.

What you say is true. Sorry! And yes, there is always hope, and perhaps not ever to see all of the symptoms.

Don't apologise Vrae lol!

That article is informative and interesting....CRPS is a negative thing to consider in any light, I think we all know that. I wasn't trying to criticise you for posting it, just saying that it is possible to overload on information of this type, and frighten yourself silly, so once read it is best tucked away so that we can live the life we still have, rather than concentrating on some of what may lie ahead for us...

It's a hard balancing act - too little information is bad, and we need to educate ourselves and keep up to date because goodness knows most of the docs and medics know so little about it , too much info can lead to you only thinking about the CRPS, and ending up obsessing about all the negative stuff that can happen. I've been both sides of the fence on it, and know how hard it is to balance on the top rail safely lol!!!

Take care I'm having a rubbish evening after doing too much today and going to my daughter's music concert....lovely, and she did really well bless her, but it did go on a long time.... I wish it was acceptable to just see your own child and then leave!!!! My whole left leg is ice cold but burning up too, and I have that deep pain back.... I've been having a much better week, and it's horrible how fragile the good times seem to be.... <sigh>

Bram.

Bram.

oh no no no, I didn't think you thought that at all. it's all good, I was just agreeing and had thought maybe it was a little heavy, but then I went and posted it anyway. and again I totally and completely agree with you in all you have said. You can scare yourself silly the more you research. kind of bumbed me out too when I read it. But I/we just keep pressing on.

Sorry to hear your not doing so well right now. The flares always seem to happen when there is much going on. I too have limped my way to many of the kids school programs. Heck this last Christmas I had all the kids home and just trying to participate was tough. CRPS has on many occasions gotten in the way of my wanting to enjoy something.

My true blessing is my husband. My God I am blessed! Such a wonderful compassionate man. We always try and keep a sense of humor. In my opinion it's the only way. I even read him that info and we managed to find a way to laugh. Like nope, so glad I don't have this or that (when in fact I do on some of it). I fear my trying to translate our poking fun at it might not be coming through in text. Nonetheless, yes, by all means... keep it light. Otherwise it just gets way too darn serious and well, then your just begging for a flare.

thanks again Bram!

and don't forget there are 2 variations of CRPS 1

There are? I guess I didn't know that. I will have to look that up.