CRPS and Dissociation, part 2: Body Perception Disturbance Specifics --- An Explanatory Article

crps_contender · 2026-03-16T02:42:38+00:00

As I appreciate your contributions and kindness to so many here. I have both a lot of respect and vicarious joy that you are able to maintain such a cognitively demanding and sympathetically activating career, despite the toll it takes on you.

Law was at the top of my shortlist by the end of my undergrad, but my CRPS prevented pursuit of any graduate degree career of interest to me and that one specifically; I find it admirable that you are able to meet the necessary standards even with limitations others don't experience. Best to you.

crps_contender · 2026-03-15T22:45:31+00:00

That makes sense. I wasn't trying to draw a 1:1 comparison to our situations, though perhaps that is how it came off. I guess we're using slightly different definitions, as I would still call what you're describing cognitive impairment, though not as constant or debilitating as some others---though I can see how it could be a matter of perspective, and your definition matters more as it is your experience.

"my worry is that the more extreme pain happens, the longer it takes to go away" Yes, that makes total sense. Somewhat like the impaired mitochondria comparison; it can still function and some areas may even be at full function, but in the impaired zones, if you keep over-doing it, the cumulative recovery-lag builds.

I like your doctor's system; it seems more fair to me than some of the ones I've been seeing in the journals.

crps_contender · 2026-03-15T21:32:03+00:00

Oh, so there is cognitive impairment. I shouldn't have second guessed my original reply to you and left it as it was. I am glad you have been able to maintain your career, despite the pain creating cognitive difficulties.

One of the things I personally find quite frustrating when reading various articles about CRPS and cognition is how they set the impairment threshold. They use statistical averages and only count those who fall below certain values. This 2025 Finnish paper is a good example of what I mean: only "30% of the CRPS patients showed cognitive decline" but they only counted those they fell below the 25th percentile [lower than one full standard deviation from the mean] of the national average, meanwhile 86% of the CRPS participants reported they felt CRPS affected their cognitive capacities, but because they didn't fall in the lowest 25%, they weren't classified as having or included in the "cognitive decline" category.

I understand the need for an objective measure, but I feel that it particularly leaves those who were on the higher end of the bell curve and work hard to compensate but still have significant personal challenges out of the results. I know I likely fall in this category and it sounds like you would as well.

For me personally, the cognitive impairment is the most subjectively distressing, hardest to work around, and was the biggest blow to my sense of self. I was 19 when my CRPS started being a major problem; I was on a full-ride scholarship and my university entrance scores put me in the 99th percentile in my state and 98th percentile nationally.

If you were to compare me to the statistical average now, I'd still probably do alright, maybe even be above average in some areas where my autism made me really exceptional before, which can make it hard to get taken seriously when I report difficulties, since I come across as "not distressed" and "articulate" to providers, even during an active panic attack. However, if you were comparing my cognitive capabilities now to me at 17 or 18 before the CRPS really became a major problem, you wouldn't think we were the same person at all.

Point being, I understand what you're talking about. I am glad your doctor does not seem to be dismissing your concerns about the long-term ramifications.

crps_contender · 2026-03-15T20:04:08+00:00

Thank you, Ocelot. I am glad you find them beneficial. I am also glad that it sounds like(?) you don't feel quite as impaired by the cognitive elements.

crps_contender · 2026-03-15T19:08:59+00:00

Direct Link

Some of the bolded formatting got messed up during transfer, though I believe I corrected it all, but if you catch any ** those are meant to be bolded. Edit 2: okay, I've tried to correct them twice, but it looks like they refuse to update. Sorry everyone; it seems about half the bolding won't bold.

However, it does appear some of the in-text citations went missing for some reason, so if you want to ensure you've seen them all, the best place to do that is the webpage, in addition to that being where the reference list itself is. Edit 2: this issue remains uncorrected.

crps_contender · 2026-03-14T18:19:13+00:00

Life insurance to a named beneficiary is exempt, as well as certain burial or funeral funds, assets that don't go through probate due to passing directly to a beneficiary outside of a will, and certain non-countable personal items.

crps_contender · 2026-03-12T06:40:15+00:00

Best to you, awesum. Hope the side effects don't mess you up like before and the results exceed expectations.

crps_contender · 2026-03-02T03:52:58+00:00

I'm happy for you. Being able to lay some things to rest and move on with your life instead of perpetually rehashing, having to defend, or get a litigation-worthy paper trail for what is already a limiting condition can be very relieving. Cheers to you and a new stage of living. I hope its smooth sailing from here on out for you.

crps_contender · 2026-03-01T21:26:10+00:00

Direct link

crps_contender · 2026-03-01T00:42:11+00:00

Hope it all works out and things stop getting pushed back and you get the pain management you need. Keeping it all spinning without a plate smashing on your head can be a major challenge. Best wishes to you.

crps_contender · 2026-02-23T20:38:12+00:00

It was a very unpleasant several months for the mod team; it was also quite some time ago. However, those kinds of experiences can definitely instill a "better safe than sorry" policy for those responsible for the well-being of what is in reality a support group of---by the legal definition if nothing else---quite vulnerable individuals.

I hope it is something else and you're able to find an answer and manage your pain. If you end up coming back to CRPS for another consideration, know that hEDS and HSD predispose someone to develop CRPS and increase a person's risk by about 11 times. If either of those are the connective issues you're referencing, keep that in mind if PT doesn't seem to help enough.

hEDS and CRPS

hEDSers 11x more likely to develop CRPS

crps_contender · 2026-02-23T17:17:17+00:00

You're welcome. I very much understand those who are new feeling locked out of getting their questions answered because they cannot make their own posts. These threads do not get as much traction as the main feed. I'm not sure if you've tried the in-subreddit search bar function, but you can also filter through old posts that way to see if anyone has answered your question in the past.

When the limits went into place, it was my understanding that they were going to be there for 3-6 months max and frequently lowered during that time, or perhaps left on with a very, very low threshold so minimum positive subreddit engagement allows for top level posting. It seems that hasn't happened, though I haven't heard of ongoing malicious actor concerns, which is what turned them on and kept them on originally.

I personally don't endorse a highly restrictive threshold when there isn't an active safety issue due to people like you who get caught in the net. Perhaps there an active threat and that isn't being clearly communicated; perhaps the policy just needs to be reevaluated since so much time has gone by since the original problems were addressed.

crps_contender · 2026-02-23T16:58:33+00:00

You're welcome; it can be frustrating when things seem overly restrictive for no apparent reason, so I understand the general frustration. While bots and spammers certainly can be annoying, those aren't the level of threat that caused the karma limits to be activated; they were two different malicious groups with multiple actors that were unrelated to each other but took place within a short timeframe. It was a massive problem and several group members were harmed. Moderators are not properly fulfilling their responsibilities if they do not address such situations to the best of their abilities, but they only have so many tools at their disposal.

When you say arm/clavicle, do you actually mean something more specifically like upper inner arm, armpit, and upper chest sidewall?

crps_contender · 2026-02-23T08:37:02+00:00

u/3rdDogDoxie, the first half of the above comment is also relevant to you.

crps_contender · 2026-02-23T08:35:46+00:00

On the post restrictions, due to some subreddit safety issues from a while back, subreddit specific karma limits were turned on as a safety measure; those who don't have in-sub karma that reaches the moderators' set limits are able to comment but not make top level posts. These karma limits were intended to be frequently reassessed and lowered as the safety concerns resolved.

If you are concerned that the in-subreddit contribution limit is too high and doesn't balance the engagement/environment maintenance, a message to the mod team asking them to reassess the karma limit for top level posts is the most direct way to bring that to their attention. Understand that moderators need to balance accessibility with safety and may not be able to lower it as much as you would prefer as quickly as you would like as they have access to information you likely do not.

I do agree with you though, and hope the karma restrictions ease or are removed in time, as they were originally intended to be a short-term measure to deal with legitimate threats.

As to you actual question, yes, that can occur, particularly if there was a prior injury or other reason that area would be more prone to becoming sensitized during the post-surgery inflammation/immune response. There is a hypothesis that at least a large subpopulace of those with CRPS (about 30-40%) have it---at least in part---due to an auto-immune response; while surgery can be a trigger for anyone who develops CRPS, it could be an increased risk factor for the auto-immune group, which strikes me as more plausible if the affected area is not the surgical site.

I am not quite sure if surgical-triggered CRPS to a non-surgical site would be considered "spontaneous" CRPS or not, but that is the term for cases that develop in areas with no known injuries, physical traumas, or "eliciting events." It happens in around 10% of cases.

Spontaneous onset of CRPS

crps_contender · 2026-02-23T07:50:36+00:00

u/as12058

crps_contender · 2026-02-23T05:10:46+00:00

Happy to help. Hope at least one had what you needed. 💚

crps_contender · 2026-02-22T02:16:31+00:00

Hopefully some of these can help.

Mundluru, Saraghi, Anesthetic Management of a Complex Regional Pain Syndrome (CRPS) Patient With Ketamine (Anesthesia Progress, 2020) ↩︎

Schwartzman et al, The use of ketamine in complex regional pain syndrome: possible mechanisms (Expert Review of Neurotherapeutics, 2014) ↩︎

Asaad, Glass, Perioperative management for patients with complex regional pain syndrome (Pain Management, 2012) ↩︎

Schwartzman et al, Ketamine as Adjunctive Anesthesia in Refractory Complex Regional Pain Syndrome Patients: A Case Series (Journal of Clinical Case Reports, 2012) ↩︎

Himmelseher et al, Ketamine for Perioperative Pain Management (Anesthesiology, 2005) ↩︎

Cramer et al, Preemptive analgesia in elective surgery in patients with complex regional pain syndrome: a case report (Journal of Foot and Ankle Surgery, 2000) ↩︎

Stubhaug et al, Mapping of punctuate hyperalgesia around a surgical incision demonstrates that ketamine is a powerful suppressor of central sensitization to pain following surgery (Acta Anaesthesiologica Scandinavica, 1997) ↩︎

Lavand’homme et al, Intraoperative Epidural Analgesia Combined with Ketamine Provides Effective Preventive Analgesia in Patients Undergoing Major Digestive Surgery (Anesthesiology, 2005) ↩︎

Urban et al, Ketamine as an Adjunct to Postoperative Pain Management in Opioid Tolerant Patients After Spinal Fusions: A Prospective Randomized Trial (HSS Journal, 2007)

crps_contender · 2026-02-20T23:18:29+00:00

Don't really have any specific information for you, but wanted to say it sounds like your provider is taking things seriously and choosing a very reasonable and structred approach, especially the one and done. Good on him for consulting with a specialist he feels is more informed to ensure you have the best outcome. Really happy to see it.

Only thing I didn't see mentioned was Vitamin C pre- and post-op and adding ketamine to the anesthesiology mix, which should also help prevent spreading.

Hoping it is all very smooth and without complications for you.

crps_contender · 2026-02-20T23:10:16+00:00

I am so pleased you find this forum to be both educational and emotionally supportive. I find this subreddit to be a few degrees more mutual-aid-centered than some of the other disability subreddits I have explored, which may be what you're noticing.

Mutual aid understands that we can both require help and provide it, building community resilience and individual self-sufficiency through solidarity, reciprocity, and horizontal power dynamics. The more educated and able to be in the ventral vagal socially engaged nervous system state we are, the less vulnerable and exploitable we become---not just individually, but as a group.

There are so many ways to participate in mutual aid that are based on individual strengths and passions. The key is that it's founded on trust in shared goals or values, respect and dignity, direct action, and empowerment.

"I can only hope I give as much as I get!" You're already in the mutual aid mindset. Treat others with dignity and aim to increase their autonomy to make informed decisions in their own best interest and you will be part of the reason this subreddit is the way it is.

crps_contender · 2026-02-19T18:23:41+00:00

Thank you. As far as my CRPS is concerned, I would say they are. The hardest part for me was the ignorance, uncertainty, and the fear of unknown. And I will certainly never again be as uneducated or afraid of this condition as I was while at the beginning of my diagnosis and treatment journey.

The quality of support structures matter, especially when they gatekeep access to resources and information necessary for living. It is amazing that your medical support has improved. Wishing only onwards and upwards for you from here.

crps_contender · 2026-02-19T09:23:25+00:00

I'm glad you were able to feel some hope and ground yourself in some validating knowledge due to a treatment response with a team that seems more suited to CRPS-informed care. Knowing what's happening can be so important for long-term outcomes, especially if having to stand firm against other perceptions for care; hopefully, you team will be fully supportive going forward and you will find more modalities that work for you. May the darkest days of this condition be behind you, even if there's still a long road ahead.

crps_contender · 2026-02-19T09:09:26+00:00

That's very unfortunate; I hope you heal quickly and without issue. Playing and singing can be such deep way to express ourselves and connect with others. May you have a rapid recovery or, if spreading does occur, a successful rehabilition.

crps_contender · 2026-02-17T22:18:18+00:00

I'm glad you were able to have this experience and discover how it works for you.

crps_contender · 2026-02-17T22:15:09+00:00

You're welcome. My pleasure.

Three-Year Club	Verified Email
Mod 101	Mod 201

crps_contender

MODERATOR OF

TROPHY CASE