I think pain perceptions are fascinating but I truly don’t understand them at all from a medical perspective. My experience with PsA was at the beginning the pain levels were intolerable, I would literally rock back and forth humming in distress unable to do anything other than that for hours even days. PsA hit me though suddenly, it didn’t come on slowly at all. And as it rampaged around my body in the first two months attacking different bits for the first time, the pain for the new bit was likewise intolerable initially. I wasn’t really appropriately treated for at least a year due to my stubborness but was on varying amounts of pred only. I also don’t really know really know what my inflammation levels were for that year either as other than pred I was stupidly refusing treatment. But as I got used to the pain and indeed obviously the pred helped I never hit those pain levels again even when the issues sort of settled in the various parts of me where I guess it thought it could damage.
So since being treated properly with one DMARD and now only one biologic (as in the DMARD had been dropped due to it reacting badly with the biologic), plus standard inflammatories and pain killers, (and pred only very rarely) I’ve also never experienced those levels of pain again whatever my treatment other than when I discovered I had two fractures in my pelvis which wasn’t the flare I thought it was. So of course the pain from them was then ‘explained’. Even bi-lateral hip bursitis whilst being painful wasn’t as painful as what I initially experienced. Neither is costo when it ocassionally but fairly regularly happens. I can suffer incapacity, but never to date have I suffered those levels of pain again and long may it stay that way.
I think though I was influenced by what happened with my mother. She didn’t have PsA (actually she might have had but only in her wrist at the end of her life) but she did have chronic diverticulitis which caused her excessive pain indeed most probably excessive to the level of her diverticular disease too. She could also get anxious and it in turn would affect her stomach which in turn would affect her bowels. And it was explained to us and indeed her that she had literally developed a ‘groove’ of reaction to pain which at her older age no amount of pain drugs could undo. It was though set off on a psychological basis as in her reactions came from her perception which had literally become skewed.
PsA hit me about a year after she died at the grand old age of 86. I was acutely aware then in the initial stages of this disease that I must not let my reactions to pain get in a ‘groove’ as otherwise I’d be ‘done for’ on pain reaction like my mother was. So far my reactions haven’t got in such a ‘groove’ as in I don’t suffer intolerable pain much anymore despite my disease activity levels warranting and passing all the tests in the UK for funding biologics. Yes I can suffer some pain but it’s my fatigue levels which for me are the indicators of how well I’m doing or not doing, not pain. Nor indeed inflammatory markers in my blood which can be high when I feel just fine, or can be low when I feel just awful. So much so that I pay little or no attention to such blood tests results. I only look at my blood test results for potential damage to liver and kidney function and nothing else.
Maybe I’m just lucky in that, as I’ve really no idea on a scientific basis on any of the above. Or if indeed it’s got any rational base. But I would agree with you @Woodworm controlling symptoms of pain is essential. But how to do that effectively I don’t know other than I know mine now are effectively controlled.
Psychologically I treat my PsA as a ‘wayward entity (primarily my immune system, rather than x or y joint(s) or tendons) which is like the worst teenager imaginable, prone to irrational tantrums and irrational destructive tendancies’, and my job is to keep one step ahead of any of those tantrums always. So in my head it’s like I’ve been invaded by something that isn’t the real me but I’m better than it. It helps me to think of it like this as something almost detached from the real me as that helps to keep the core of me just more capacitated (psychologically at least) in sorting out the various attempts at tantrums etc.
So whilst to many of you this might all just indicate I’m totally bonkers, maybe I am, but I keep functional presently at least and I don’t suffer those intolerable pain levels anymore. I’m fine with that.