u/crps_contender

As ever, brevity is not my strong suit, though I try to be fair.

Background: I am currently being seen by the pain clinic medical director at (what I consider to be) the premier research university in my local tri-state area. He is the only provider I have ever seen that claims CRPS as a specific specialty. I have exhausted the local relevant provider options.

I specifically requested a referral to this medical director as my last attempt before retreating due to repeated bad experiences. Due to my demographics and appearing increasingly flat when I am in pain or stress, many doctors do not take me seriously or engage heavily in diagnostic overshadowing. I wanted a doctor in a more progressive metro area who could hopefully be better informed. I have now seen him four times over two and a half years.

Here's the issues:

1. He cuts me off mid-answer to keep the appointment moving forward, but then makes decisions on those half answers. My neuro diagnosed trigeminal neuralgia and put me on lamotrigine for it (in addition to the three other meds she gives me); he asked me to describe it and I got part way through the motor issues before he moved on and I didn't describe the pain or goblin/half-hag like issues I'm constantly counteracting, but he wrote down what I'm describing is more accurately facial palsy. Maybe it is, but I didn't finish telling him all of the symptoms before he had heard enough. He was only interested in the lamotrigine as a psych mood stabilizer (which, to be fair, it has also helped with that too).

I know he knows he's cutting me short because at the end of our first appointment he mentioned how he bet I didn't like being cut off repeatedly, but smugly not apologetically. He hasn't been openly smug like that again in following visits. I don't know if he was testing me or something, but it isn't really something you forget, especially when you put in as much effort, energy, and resources to get to the appointment as I did.

2. He doesn't offer me CRPS medications. To be fair, I tried a lot of medications before I made it to him and I am on several medications managed by other providers, but he has not offered to provide any or suggested any other options beyond the one I'm about to bring up. He also doesn't think I'm a good candidate for blocks or stimulators, so he won't provide those either, which---to be fair---I agree I am not a good candidate. His recommendations are trauma therapy (been in it for almost a decade), TMS (done it twice), and yoga and tai chi (I do gentle exercise).

I know he will prescribe medications to other people, because I have seen posters here talk about him giving them meds on their first visit. I know he's aware of memantine (an NMDA agonist being used off-label for pain conditions) because I've seen people here be prescribed it by him. He is aware ketamine was my most effective treatment, that the cognitive issues are what I consider the most limiting, and that I only stopped due to cost, but he has never brought up a medication before our last appointment and never memantine.

It's like as soon as he heard that I had to rely on dissociation as my primary pain management tool due to years of insufficient medical care, he decided CRPS wasn't the main issue; during the first visit based on his phrasing and demeanor, I thought he was going to revoke the CRPS diagnosis entirely, which he did not do.

At our most recent visit, he said he wanted to be careful how he worded things and he does think I have CRPS but that he doesn't think it is the main issue and that medical science doesn't have a term for what I'm experiencing. He wouldn't really expound on what he thought I am experiencing or take a clear position. He then meandered over to CFS/ME and talked about that for a while, but it sounded like he didn't think that was what I was "really" experiencing either; I left confused because there was a lot of implication under what he was saying about the "CRPS to fibromyalgia to CFS/ME nervous system spectrum," but he wouldn't actually say what he meant.

3. I recently stopped working with two providers and he responded very differently to learning about them. One was my electrophysiatry/dysautonomia team; the DO moved away and the PA cannot see me without oversight. There is no other local EP who can see me. This team filled six of my prescriptions and all of the critical ones except one; they were also my most respectful, most supportive, most "bio"-believing providers, and the best documenters. I did not choose to end this relationship, and the loss is devastating to me.

The other was my psych, who I terminated after finally reading the notes he wouldn't give me despite requesting several times. The notes were atrocious. The truthful parts were extremely sparse on details. He was frequently distorting what occurred by documenting only the lowest ranges I reported and not including medication we trialed or their side effects; they were often openly fraudulent, stating things didn't occur that did. I worked with him for three or four years and our appointments averaged seven minutes. He wasn't prescribing traditional psych meds, only two for insomnia and fatigue and I only regularly took the anti-histamine.

My PCP is taking over all these meds from both specialties, but he cannot change any of them. When I told my pain specialist, he was unconcerned about the EP team, but his head snapped up when I mentioned the psych and he emphatically said I needed to find another right away because I need a psychiatrist. I have a regular therapist who is way more helpful. I told him why I ended and that I would like it that documented that I contest those records now that I have seen them; he did not document that, though all of his records start with him expounding on my multiple mental health conditions.

I am very aware mental health impacts physical health; I adhere to the biopsychosocial model. But I do not believe my mental health is the root cause of these conditions, which seems to be what he is implying, though maybe I am reading into it too much, as he hasn't actually said that openly.

4. He suggested a medication for the first time: sodium oxybate, a heavy duty narcolepsy medication that requires a diagnosis to prescribe and generally isn't well tolerated by those with medication sensitivities. I am extremely medication sensitive; I couldn't handle the gabapentinoids, multiple antidepressants, trazodone, or prazosin for the sleep issues. I have had to stop many others for similar reasons.

It also doesn't sound like he is willing to prescribe it, but rather I should bring it up with my PCP, though he wasn't clear. He thinks my sleeping issues sound like narcolepsy, though I have had a negative sleep study, which he knows; granted, I wasn't a great candidate for that kind of testing.

I told him since I have already pursued this once and everything came back normal, if he wanted me to pursue it again, I would prefer that he sends a letter to tell my PCP that, rather than me having to bring it up. He did not send my PCP a letter. There is no mention in my chart notes of the sodium oxybate recommendation or anything under the consider with PCP section; there is a reference that he thinks my sleeping sounds like narcolepsy, but that's it.

I cannot even trial that medication without a diagnosis, but I think it likely I won't tolerate the meds and I cannot undo a diagnosis like that; sounds like a lot of risk that he doesn't intend to help me through.

Feedback: I don't know if I have been treated with hostility so frequently that I am seeing things that aren't there or if I have become so desensitized to mistreatment that I am giving him the benefit of the doubt when it is clear he doesn't deserve it. The loss of my EP hit hard and I don't know that I can rely on just this pain guy as my dysautonomia pain expert without the counterbalance of my supportive provider, but I don't have anywhere else to turn.

I mainly need him for longitudinal record-keeping and his CRPS-specific knowledge, which no other provider I have ever seen has claimed. I am willing to keep working with him if his records and reputation and social standing will benefit me, even if doing so leaves me off-kilter and confused. But if all of those factors are actually doing me harm, then it's better that I see no one than someone who will use their immense social status to undermine me in the legal record. And I am not sure which he is doing because he does not speak clearly to me and a lot of it is implications, which I'm not great at.

But he isn't willing to prescribe, doesn't reach out to my PCP even when specifically requested and explained why, doesn't record things or counteract things even when explicitly explained why I need such a thing, and doesn't let me fully speak, which sometimes seems to bring him some sort of satisfaction.

Or maybe I'm being too sensitive and need to appreciate any help that is being provided, regardless, and should keep seeing him in the long-term to allow the records to accumulate.

I'm just... tired. Am I overreacting for considering leaving this doctor even though there's no real alternative?

Part 2, 6.8k words, 35-45 min read.

We’re here to reduce the trial and error attempts required before achieving success within the healthcare system so there’s less cumulative harm, or at least offer a guidebook to reduce confusion and discombobulation. We’re starting with the brass tacks delivered in frank and direct language; this is specifically designed to be autism-aware and trauma-informed. 

The goal in this series is to increase healthcare independence and autonomy through patient education and provide a solid foundation to be able to competently interact with the medical system, know who to seek out when concerned or frustrated with treatment or policy, and have the required knowledge and proper language to better advocate on one’s own behalf—or at least have the terminology to provide oneself a mental buffer if advocacy isn’t the selected path forward. 

This series will have three installments, and each will focus on one of the three levels of the institutionalized healthcare pyramid, one psychoemotional component that affects provider-patient relations, and two aspects of protecting oneself while within that system—one for those who benefit from clarity on next steps during confusion or isolated incidents of unprofessional behavior and one for those in a pervasive hostile environment.

Exceeds character count. Direct link.

7.3k words, about 45 minute read; US-oriented, though parts may still be useful in other regions. Excerpt:

Many individuals with CRPS or other chronic conditions will need to interact with the healthcare system on an ongoing and often frequent basis; this can be aggravating, intimidating, expensive, and sometimes even traumatizing. Providers may not meet the standard of care or provide patient dignity and compassion. Communication between offices can be poor and waitlists can cause delays. Insurance can deny needed treatments or testing, and those paying out of pocket can be charged enormous bills for services. 

All of this can be made significantly worse if one does not know how the system operates and what the proper (and usually unspoken) procedures are to get necessary care. The health industry in the United States is complex and difficult to understand, even for someone skilled at implicit communication, with good financial resources, and caregivers who taught them the ropes of getting medical care and being an independent adult to the best of their ability; even for someone with the best circumstances and support systems, it may take a great deal of trial and error before successfully getting the proper help from the proper person. 

However, for those who grew up in abusive or neglectful homes, those with few monetary means, those in minority groups, or those with social communication challenges—particularly those with low-to-moderate support needs autism who often require clear, direct, straightforward, and factual directions and communication but can or must attend appointments alone—, the trial and error period may not end in success, and they may not receive the help they were seeking. Their attempts to get aid may just result in cumulative harm instead. 

Let’s try to reduce some of that trial and error, so that fewer attempts are required before achieving success; we’re starting with the brass tacks delivered in frank and direct language. This is specifically designed to be autism-aware and trauma-informed; if the way something is phrased in this series doesn’t quite sit right with you or seems too explicit, I am so glad you don’t need to hear it—it isn’t in here for you. 

You may know various degrees of this information, but we’re coming at this from a very baseline level; the goal in this series is to increase healthcare independence and autonomy through patient education and provide a solid foundation to be able to competently interact with the medical system, know who to seek out when concerned or frustrated with treatment or policy, and have the required knowledge and proper language to better advocate on one’s own behalf or at least have the terminology for one’s mistreatment to offer validation and a psychological buffer**.** 

This series will have three installments, and each will focus on one of the three levels of the institutionalized healthcare pyramid, one psychoemotional component that affects provider-patient relations, and two aspects of protecting oneself while within that system. One protection approach is for those who benefit from clarity on next steps during confusion or isolated incidents of unprofessional behavior, whether by being able to more easily recognize bias for safety and trust assessments while having specific language for it, self-advocacy at a system level by requesting accountability or a record correction, or self-advocacy at the interpersonal level offering frameworks for addressing issues with providers or staff directly. 

The other protection approach is for those in a pervasive hostile environment, including crisis management via a transition from a trusted dignity approach to a transactional safety approach, terminology for survival-driven proxy approaches, the two main philosophies in sustained hostile engagements (particularly when one side has exponentially more resources and manpower), the importance of maintaining a reality-based framework of interpersonal and systemic abuse rather than attempting to gaslight-away “cognitive distortions,” and the critical element of building confidence and self-assurance to maintain the moral will to defend one’s safety and dignity under an administrative philosophy deliberately designed to grind it into dust and cripple one’s ability to resist, obtain resources, or make informed and autonomous decisions in one’s own best interest.

Direct article link

This is Part 4 of the CRPS and Dissociation series: Hypotheses for Depersonalization's Underpinnings.

This is by far the longest and most complex article of the series---coming in at approximately 7.5k words and an estimated 40-60 minute read time---so if this strikes your interest, I'd suggest reading it when you have the time and mental bandwidth for a heavy cognitive load.

This one exceeds reddit's character limit by a substantial margin, so I am only offering the direct article link today: https://crpscontender.com/2026/05/crps-and-dissociation-part-4-hypotheses-for-depersonalizations-underpinnings/

This is the final planned article for the Dissociation series; however, due to its length and complexity, I am considering offering a shorter, simplified Part 4 if there is enough public interest; if this is something you would like to see, please let me know in the comments and I will make that next month's article before moving to the next project on my docket.