Complex Regional Pain Syndrome (CRPS), what to do?

U

unicorn7

Senior Member (Voting Rights)
I was wondering if anyone here has any knowledge about CRPS?

A close family member broke a little bone in his foot 6 months ago. Within two weeks the foot was weirdly colored and only got more and more painful.
Because there is an aunt who had CRPS 20 years ago, we knew what it was pretty quickly. He got into rehabilitation really quickly, but it’s only getting worse?

The whole foot is extremely cold and sweaty at the same time. He has a whole feeling of sickness and sweatiness as well. He can still not put any weight on it or even let the foot hang.

I’m hearing all the ‘central sensitisation’ stories, the story of the “alarm in your brain is broken” etc etc. It makes me worried! Maybe I’m overreacting because this model is so harmful in ME, maybe pushing through will be fine in CRPS?

Anyone knows anything about the newest pathofysiological research in CRPS or any treatment ideas? Is the central sensitisation model also controversial in CRPS?
 
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I came across several cases of CRPS but never across any very helpful theories. I don't think central sensitisation makes sense for CRPS, because it is a very local and peripheral phenomenon. And whatever central sensitisation there might be it is obviously not the same as whatever might occur in other conditions.

Nobody understands anything about this condition as far as I know.
 
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Theresa said:
This is a link to an article discussing a potential overlap between CRPS and FND, I don't know enough about either to judge whether the article is accurate or not but it might be helpful.

Complex regional pain syndrome and functional neurological disorders – time for reconciliation
https://www.ncbi.nlm.nih.gov/pubmed/31102747
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That seems to be the wrong URL?

CRPS and FND do have some relation but I think it is more of a distraction than a source of insight. Most CRPS just pops up after trauma for no reason one can see.
 
Theresa said:
Apologies, yes, it is the wrong URL, this is the one I meant to post:

Complex regional pain syndrome and functional neurological disorders – time for reconciliation
https://jnnp.bmj.com/content/90/5/608?rss=1&hootPostID=27c56b7434044fb5a6b10e468c08eb33
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Uh-oh! Jon Stone and pals. Psychoneurosociofunctionobabble at its most refined.

They seem to forget that the 'mind' is the functioning of the brain, so a disorder of brain function (FND) is all in the mind by definition. For sure that does not mean that it is malingering but they do not seem to understand that minds are a bit more complicated than that. I think this is a review written by a trainee needing some papers.
 
unicorn7 said:
Because there is an aunt who had CRPS 20 years ago, we knew what it was pretty quickly.
Click to expand...
There seems to be registry here for people who believe their neuropathy has a genetic component.
https://neuropathycommons.org/content/join-neuropathy-gene-registry

unicorn7 said:
Anyone knows anything about the newest pathofysiological research in CRPS or any treatment ideas?
Click to expand...
This paper found gene expression of MMP9 to be upregulated in patients. What might be of interest to you is the list of meds the participants were taking. As far as I'm aware there is no known working treatment, but have heard there are some treatment trials going on.
https://clinicaltrials.gov/ct2/resu...ain+Syndromes&term=&cntry=&state=&city=&dist=

My close family member did the physical and brain retraining in-patient "treatment" in Bath UK. Deteriorated quite soon afterwards.
https://www.crpsandcancerlateeffects-bath.org.uk/

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0079435
@unicorn7 There are some charities you could look into. e.g. If you are in the UK
https://twitter.com/CRPSUK

My commiserations to your family member. Awful disease.
 
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After damaging his shoulder in a fall down the stairs a relative has all the signs of CRPS. every now and then with no apparent reason his shoulder hurts, his hand swells up (a lot!) and turns blue. If anything looks physical that does. The paper by Stone was just rubbish. It made no sense

" FND is no longer assumed to be only the result of ‘conversion’ of psychological conflict but is understood as a complex interplay between physiological stimulus, expectation, learning and attention mediated through a Bayesian framework, with biopsychosocial predisposing, triggering and perpetuating inputs. Building on this new ‘whole brain’ perspective of FND, we reframe the debate about the ‘psychological versus physical’ basis of CRPS. We recognise how CRPS research may inform mechanistic understanding of FND and conversely, how advances in FND, especially treatment, have implications for improving understanding and management of CRPS."
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My bolding. They should have stopped at physiological the rest is just meaningless psychobabble.
 
Van Houdenhove, probably the most influential voice on CFS in Belgium (he's retired now) used to speculate about Complex Regional pain Syndrome before he focused on CFS. He formed a biopsychosocial model of reflex sympathetic dystrophy (RSD), which I believe is an older name of a form of CRP, in which there was an important role for existential loss and narcissistic and hysterical personality traits.

He wrote (page 303 of this article): "Our basic assumption is that patients suffering from RSD are at the time of the physical trauma confronted with a dramatic psychological situation that they experience as an existential loss i.e. a loss that fundamentally threatens an important life perspective with which they cannot adequately cope."
 
Michiel Tack said:
Van Houdenhove, probably the most influential voice on CFS in Belgium (he's retired now) used to speculate about Complex Regional pain Syndrome before he focused on CFS. He formed a biopsychosocial model of reflex sympathetic dystrophy (RSD), which I believe is an older name of a form of CRP, in which there was an important role for existential loss and narcissistic and hysterical personality traits.

He wrote (page 303 of this article): "Our basic assumption is that patients suffering from RSD are at the time of the physical trauma confronted with a dramatic psychological situation that they experience as an existential loss i.e. a loss that fundamentally threatens an important life perspective with which they cannot adequately cope."
Click to expand...
These fools better pay attention to what is happening with Eysenck, which itself is likely far from over and should spill onto the crisis of replicability and how the BPS model is built from the same foundations. What a load of garbage.

It almost reads like projection to convey such specific personality flaws onto arbitrary outcomes. This assumption is ridiculously easy to falsify, yet I'm sure it could have several decades of play until those who proposed it retire and some new nearly identical BS takes its place. Less assumption and speculation, more scientific method, please and thank you.
 
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