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Posted by on Sep 10, 2017 in Rare disease | 0 comments

CRPS news (10.09.2017)

CRPS news (10.09.2017)

Something rather extraordinary happened last month. A new medical journal article was published, on Complex Regional Pain Syndrome (CRPS). Because it’s a rare disease, often still referred to by one of its previous names (Reflex Sympathetic Dystrophy; RSD), it’s rare to see an article about it.

It’s an article meant for doctors, so I’ll try to provide a summary without too much ‘medicalese’. All of the information in this post is from the same article; the link & reference information is at the bottom of this page. I’ll put my notes in [square brackets], to show that they’re not part of the article.

Words associated with Complex Regional Pain Syndrome

Image: Sandra Woods

Bear in mind that I’m not a doctor! My background’s in bioethics – also called medical ethics – and I used to work in a hospital research team, so I can usually understand the basic message of a general medical journal article.

If you need medical advice, you should see a physician. This article ends with the warning that “The content on this site is intended for health professionals”. So please keep that in mind.

This article starts off simply enough:
CRPS “is a clinical disorder that is characterized by severe, continuous pain in the affected extremity… The pain is regionally restricted” and more painful than what you’d expect from the original injury.

More women than men get CRPS. It seems that the rate is 3 or 4 times higher in women. It’s usually triggered by a fracture or surgery, and affects the arms more often than the legs. There’s usually only 1 arm or leg affected by CRPS, but there have been cases involving more than one limb.

[I’ve read that a Colles’ fracture – a completely snapped radius, near the wrist – is the type of broken bone most likely to trigger CRPS. That’s what I had, back in March 2016.]

The development and progression of this disease, and its, symptoms, are affected by many different systems within the body. [That’s why different patients can have different sets of symptoms, even if we all have the same disease. That’s what is means if you see the phrase “CRPS patients can present differently”, or another statement like that.]

It seems, from some new research, that CRPS could be an “exaggerated inflammatory response as a result of trauma or surgery”. But that hasn’t been proved yet, so it’s just a theory for now. [Trauma includes injuries like broken bones, and bad cuts or wounds.]

The authors of the article say that:
“CRPS can have a severe impact on the quality of life of patients and can lead to substantial physical and social disability. It is therefore important for clinicians to recognize and diagnose this disorder in order to provide appropriate care and guidance to patients suffering from this debilitating disease.”

And they add something I’ve been trying to do – as much as possible – even though it’s excruciatingly painful; physiotherapy:
“CRPS should be treated in a multidisciplinary fashion with treatment consisting of adequate pain management, physiotherapy, and psychological evaluation and intervention.”

[I read, not long after my diagnosis, that patients with CRPS often end up with a ‘claw hand’. The hand gets stuck in a curled-up position, so isn’t useable. And that even if the disease goes away, the hand’s been curled-up for so long that it stays that way. I’m hoping the CRPS will ‘resolve’ – go away by itself – someday, and don’t want to end up with a hand I can’t use; even if I don’t have the disease anymore. So I endure lot of extra pain from physiotherapy. It’s really hard to do, though!]

And that’s my basic summary of the article. I’m planning to bring a copy of it to my next appointment with my family doctor, because I know he appreciates getting reliable information about my rare disease.


Krishna D Bharwani, MD; Maaike Dirckx, MD PhD; Frank JPM Huygen, MD PhD FIPP FFPMCAI. Complex regional pain syndrome: diagnosis and treatment. BJA Education, Volume 17, Issue 8, 01 August 2017, Pages 262–268. Web:

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