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 uncommon to see an article about it.
This article in in a medical journal, meant for doctors, so I’ll try to provide a summary without too much ‘medicalese’ or medical jargon. All of the information in this post was pulled from the same article; the link and reference information are at the bottom of this page. I’ll put my own comments in square brackets, to show that they’re not part of the article.
Bear in mind that I’m not a doctor! That being said, my background is in bioethics – also called medical ethics – and I used to work as part of 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“.(1) So please keep that in mind.
This article starts off simply enough, by saying that CRPS
is a clinical disorder that is characterized by severe, continuous pain in the affected extremity…
The pain is regionally restricted”(1)
It’s also much more painful than what you’d expect from the original injury or trauma. Although CRPS can sometimes have no cause that can be pinpointed.
More women than men get CRPS. It seems that the rate is three or four 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 one arm or leg affected by CRPS, but there have been cases involving more than one limb.
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 it means if you see the phrase “CRPS patients can present differently”, or other similar statements.]
It seems, from new research, that CRPS could be an “exaggerated inflammatory response as a result of trauma or surgery”.(1) But that hasn’t been proved yet, so it’s just a theory for now. [Trauma includes injuries like broken bones and severe wounds.]
These researchers, in this 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.”(1)
And they add something that 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.”(1)
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 becomes unusable. Even if the disease later goes away, the hand has been stuck in that curled-up position for so long that it stays that way.
Even though I’m hoping that my CRPS will ‘resolve’, just go away, by itself someday I don’t want to end up with a hand that I can’t use. So I endure a lot of extra pain from physiotherapy, to prevent that. It’s really hard to do, but I tell myself that it’s worth it!
If you’re reading about CRPS here, then you probably already know that no medical test can confirm this disease. Doctors have to diagnose it based on their own judgement, using a set of criteria – a list of symptoms – published by the International Association for the Study of Pain (IASP). This article confirms that there is still “no diagnostic test specific for CRPS.”(1)
What had seemed most promising to me about this medical journal article is that it listed different possible causes for CRPS. I thought, by the end of the article, that the researchers would have pinpoint the cause – or maybe several causes. But no, “the pathophysiology of CRPS is still not completely understood”; which means that even scientists can’t figure out what causes it!
Instead, the conclusion of this research is that we still don’t know yet what causes CRPS. It seems like it might be genetic – but that hasn’t yet been proved. It also appears to be an autoimmune disease – but more research is needed to prove that. Changes in the brain, “cortical reorganization and changes in pain processing”(1) might explain CRPS – or might not.
Many doctors and researchers believe that that CRPS is “an exaggerated inflammatory response as a result of trauma or surgery”(1), but even this “has long been a topic of debate”. (1) The experts can’t even agree on this!
This medical journal article also says that the future of CRPS treatment will likely be based more on an understanding of its underlying causes. Right now, treatments all target the symptoms – not the reasons for them: “In the future, we expect a shift from a symptomatic to a more mechanism-based treatment of CRPS.”(1)
Before that shift can happen, though, researchers will need to figure out what causes CRPS. We know that there are certain triggers for this condition, for example a broken wrist or ankle – or surgery. But knowing what triggers the disease is different from understanding what the underlying cause of the disease is.
It seems that we’re still far from that scientific understanding, a long ways away from pinpointing what exactly causes CRPS. Without knowing what causes a medical condition, it’s very hard – often impossible – to come up with effective treatments.
Reference
(1) Krishna D Bharwani, Maaike Dirckx, and Frank JPM Huygen. Complex regional pain syndrome: diagnosis and treatment. BJA Education, Volume 17, Issue 8, 01 August 2017, Pages 262-268. Web: https://academic.oup.com/bjaed/article-abstract/17/8/262/3957912