This is my personal experience which I believe is complicated by trauma – the response of my caregiver to my RSD growing up.

I often still feel the physical pain for days on end (I’m on day 4 of an episode triggered by a feeling of failure). Triggers are exactly as you describe: perceived criticism, lack of approval, change in someone’s mood with no explanation, fear of failure, fear that I’ve disappointed/going to disappoint someone, and rejection. However, if the criticism or disapproval is overt, I handle it far better than when received via passive aggression. Any ambiguity about the situation sends me into a spiral.

It all now gets connected back to the rejection and abandonment I experienced growing up, when I was somewhat ironically needing reassurance from my caregiver and reached out to them, only to be rejected. It wasn’t an immediate rejection. It was a frustration (tutting, eye rolling) that I didn’t immediately feel better with the reassurance they were giving me. I had no way of articulating the physical pain. That it was still there like a crushing weight despite them trying to reach me. In fact it would often feel far worse so I stopped trusting people, I stopped trusting myself and didn’t ask for help.

Disappointment is by far the hardest emotion for me to process and is regularly accompanied by the crushing RSD chest pain. I’m still learning what to do with it and understand what I need. To anyone else going through the same, hang in there. Parent yourself in the way you perhaps weren’t. Learn to trust yourself again first and foremost. That’s been the key for me, and knowing that this isn’t it for life. The spaces between the triggers get wider with healing. There is peace from it.

Thank you again.

I have a query and I’m not sure if it’s subtle nuance of RSD or not. Every piece I’ve ever read about RSD references the ‘outbursts’ that flare up and dissipate as quickly as they arrive.

I rarely – if ever – have these. Almost everything with me is internalised, and not outwardly directed at others at all. I might *in my head* be angry at their perceived lack of sensitivity or cruelty, or feel incredibly slighted or ‘done to’, but I do not ever say this for fear of reprisal or losing friends or being thought of as weird or over-sensitive, Instead I relentlessly churn these thoughts, internalising the “they don’t like me, I got it wrong, they think I’m XYZ, I’m not as popular as ABC, they’re just putting up with me to be nice…”

I’d *avoid* an outburst at all costs as I don’t lack consequential thought, having the foresight to know it might be perceived as weird if I had such a thing, and that I’d subsequently be mortified with extreme embarrassment as a result as there’s often no going back – once it’s out it’s out, and people become wary of you as a bit of a loose cannon. Like a snooker player thinking five moves ahead, I’m able to foresee this, preventing me from ever (or *incredibly* rarely, and even then, not extreme) having such an outburst. This means I internalise even more, and spend even more time ruminating. It’s all thoroughly exhausting…

Aside from this externalising element, I can tick every RSD box above, and I found your following bullet point particularly resonated, as I’d not seen this take before:

• “Avoidance of social settings in which they might fail or be criticized (for this reason, RSD is often hard to distinguish from Social Anxiety Disorder)” really struck a chord with me.

A mass of contradictions, I am a very sociable, and social person with a lot of friends and connections, and I love meeting people, perform to audiences of hundreds, and also run workshops where I’m *very much* on show and thinking on my feet at 100mph. Answering difficult psychological questions on the spot, and finding rapid creative solutions to complex problems alongside cracking jokes and (so I’m told!) being ‘highly entertaining’.

For these reasons the Social Anxiety label never sat well with me – it’s not universal, or I’d avoid all these situations above, I’d have thought, no?

I will though, feel *extreme* anxiety in a social situation where I anticipate I will be *judged, criticised, assessed, or deemed to have failed in the slightest way*. I take teasing very much to heart, turning it over and over in my head, and get extremely upset, but never lash out at others, as I’m far more likely to label it a failing in *myself* to be robust or resilient enough to cope with such teasing and have a water-off-a-duck’s-back response – Oh how I have so often wished for this teflon-coated skill!

For the other comment/question about dosing of an alpha agonist there are several factors that determine response.
1) Dose: There is a wide range of optimal dosages but in my practice I found that about 80% of responders did so in a very narrow range of guanfacine 3 mg per day or clonidine 0.3 mg per day.

2) Time: The alpha agonists act by down-regulating adrenaline neurons (at least that is what we think is happening with RSD). Down-regulation takes time and what we found was that it took about 5 days each time we increased the dose to see the benefits fully develope.

3) Response rate: I always looked to get a “robust” i.e. life-changing level of benefits. My experience has been that the alpha agonists either work dramatically well and with few if any side effects or they didn’t work at all. There were very few people in the middle.
That level of response happens for only about 30% of people to each medication. However, it is a different 30% with each molecule. If I did not get a robust response with the first molecule I tried at a final dose of 3mg of guanfacine or 0.3 mg of clonidne for at least 5 days, I would stop that medication and try the other molecule. If both were tried, the total response rate was about 55-60% of people. Unfortunately, that still leaves 40% of people for whom these medications do not work.
4) Consistency: These medications need to be taken almost every day. If a person misses only 1 dose per week, it seems that they can get by pretty well. Missing more than that, however, seemed to send them all the way back to the beginning of the 5 day wait for the medications to work. Consequently, if a person is missing 2 or more doses per week, they were probably starting over so frequently that the medication looked like it was not working at all.

I hope this is helpful in spite of being a very brief overview. I will check back in a week or so to see if you have further questions.
Best regards, Bill Dodson

I was going to remark on on your point re quantification of the phenomenon, although I see someone else has beaten me to it. To affirm their point, then: there are indeed a range of qualitative and semi-quantitative methodologies available in the social sciences, from ethnography to Q-methodology. And while I can see how it mightn’t be immediately apparent how the results of qualitative work can be fitted into diagnostic criteria based on quantitative studies, they might nevertheless serve as a useful adjunct to clinicians and patients alike. Indeed, your article is a kind of qualitative study, no? And surely psychiatry, like other schools of medicine, has a lot of experience in the use of expert judgement?

Re Clonidine: I wonder if you could go into more depth in a future article. I suspect many of us would welcome it. I’m prescribed both Clonidine and Dexamphetamine, though I admit I’m a little lax in taking the former, simply because the effect is very hard to gauge. I do notice it calms me somewhat, and indeed often take it with the other first thing, and sometimes by itself at evening. And I can sort of see how it might help to deal with the blows of RSD. (Something to watch.) I wonder then, and no doubt naïvely, if other calmative medications might also prove investigation.

Your insights on RSD have opened my eyes to its role in my life. It is, indeed, crippling. (And also makes me think it’s the reason why ADHD is often confused with bipolar disorder.) In fact, it’s perhaps done the most damage to my career and relationships. But, as you say, identifying the beast is at least a start to dealing with it. Which does make me think there’s a role for mindfulness and other coping strategies here.

Thank again.