@Friendlygingercat I came back because I read your post very late last night and didn't want to comment without real thought.
I think chronic intense physical pain is a very different thing to some of the other issues raised on this thread. It's perhaps even less discussed than mental pain, so I can imagine you feel very alone. I really, really feel for you.
I wanted to urge you to explore every possible avenue in terms of pain management.
Women are catastrophically and structurally discriminated against when it comes to chronic pain because of an entrenched misogynist belief that pain is part of the female condition, and we are consequently built to endure it. We internalise and punish ourselves with this convenient construct - but that's all it is, a construct.
Relatedly, I know that it's true that in some conditions pain really cannot be truly managed. But there are many others in which pain is presented by GPs as being intractable, when it isn't at all.
GPs have incredibly broad but usually also incredibly shallow knowledge (not a criticism, GPs - I think it's probably the only way the job can be done.) They are often a decade or so out of touch with significant bodies of research.
Please, start making yourself a total thorn in the side of the NHS? Begin with your GP and when fobbed off, write a complaint, quickly. Don't give benefit of the doubt, don't be sentimental - escalate rapidly to the next level, citing research on the health system's structural tendency to dismiss women's pain and sounding - not litigious, exactly, but like you're not afraid to make complaints to statutory bodies and name names. Your first emails will take you half a day to draft, but soon you will have a google doc that you can quickly cut-and-paste from for the next escalation.
If you possibly can, be relentless until they refer you to a pain/palliative specialist. Then carry on being 'demanding' until you are absolutely certain they have given you everything they can.
Ask to be put into trials. Insist they respond to your questions about new approaches (see below) such that they demonstrate that they are familiar with them. If they're uninformed, raise a concern. Be determined and unashamed (but know when you've found one of the good ones, and show them they are appreciated. In my experience palliative medicine is populated with many good ones.)
Your post is brief, but even so it's clear that your life is well-led and satisfying - and that you are someone with resilience, clarity and determination. So, while you are waiting for the NHS to give you what you are entitled to, research as widely as you can all aspects of pain theory.
Read around all the evidence-based approaches - but also definitely look into athe apparently woo stuff - at least some of yesterday's woo is today's evidence-based research. You'll come across grifters - but they will usually have built their quackery on a kernel of someone else's serious work, and you can then follow that trail.
It is (I hope this doesn't sound like I'm making light of the real life reasons we are discussing this) a deeply interesting area, and intersects with many of the things that interest me and maybe you - neuroscience but also the conceptual brain-mind-body structure (I know there is a real word for this), both in terms of 'mind over matter' but also how we construct reality, consciousness, things like that. Also (for me) the growing awareness amongst serious researchers that inflammation impacts pretty much everything - not just individual conditions but also the experience of pain.
You don't have to 'master' all this or even understand it in whole chunks - particularly important to know, since pain makes learning hard. Just skim it when you can, retaining dribs and drabs.
Find other ways to absorb it - Instagram science communicators or podcasts. . A subscription to chatgpt is incredibly useful for distilling dense research accessibly - you're not doing a PhD.
You will quickly have a good enough grasp of the approaches to and vocabulary of pain to understand which are worth pursuing in depth - and also, to be able to confidently raise them with your palliative consultant.
All this also goes for researching your specific condition too - I'm sure you've done this and perhaps become exhausted and demoralised. If you can pick it up again, you may find new avenues; the purposefulness of the research process can sometimes help too.
Again, I'm sure you have done this, but if not find the forums and closed facebook groups where people discuss their experiences and what has worked for them. 'Support community' is such a cliched term but they can be life-changing.
To return to inflammation, I would be looking into any lifestyle change I could make to reduce it, primarily through the gut microbiome - no-UPFs, lots of fermented foods, 30-plants-per-week, no or little meat, etc etc. Some argue that this is just the most recent faddy/culty/money-making diet extremism, but I'm definitely a 'this is the right side of history' person on this. Every month more peer-reviewed evidence emerges. I really like @drkaranrajan on Instagram for bite-size evidence based non-woo communication on all this stuff.
Also in 'self-help' (such a gaslighty phrase but..): sleep - so critical in regulating inflammation and just plain-old 'ability to cope', and such a horrendous vicious circle when you can't do it. I'd force my GP to give me handfuls of sleeping pills - again, if they are difficult on this, cite research on GPs not taking female pain seriously. Sometimes you just need to break the cycle of escalating sleep deficit by any means possible, even if only intermittently.
If you are inclined, alongside the 'pain theory' research I mentioned above, the 'philosophy of' aspects might also interest you. Nietszche on the funtion/meaning of pain in real life (absolutely no need to read the dense primary texts, 'beginners guides' totally sufficient) might be both interesting and useful in making sense of the position you find yourself in.
Stoicism is Nietszche-adjacent (in this) but more 'applied' in that it offers some genuinely practical approaches to bearing the almost-unbearable. (Avoid Schopenhauer unless you are interested enough to survive his deeply depressing overall analysis long enough to reach the 'solution'. Disclaimer: as I'm sure anyone with real knowledge will have immediately seen, IANAPhilosopher)
Regarding the plans you are making: I think you would find some truly non-judgemental in-person talking support incredibly helpful while you sift through your thoughts and feelings on this. If you can afford it, I would recommend a psychodynamic psychotherapist (not CBT, interpersonal or humanistic, maybe integrative if you can't find psychodynamic). Please do not go with a counsellor - insufficient training for this, and definitely can do more harm than good (to themselves and the client).
If you can't afford psychotherapy and live in or near London, you can self-refer to The Listening Place - it offers face-to-face weekly sessions to people experiencing suicidal feelings (very different from Samaritans). This is not counselling or therapy, but active listening by well-trained volunteers (who importantly, have their own supervision sessions). They are not shocked by and crucially, do not have a 'position on' suicide - they will not try to dissuade you and nothing is unsayable - they are able to hear everything you say and 'bear' it, which friends or family simply cannot do.
Separate from the suicidal feelings themselves is the pain of being unable to express them - being able to do so safely, without guilt, shame or worry for others, can provide real emotional relief in the now (I'm consciously not saying anything like 'can help you overcome these feelings'). If you don't live near London, give them a call and ask if there is anything similar near you.
I'm sorry this has turned into such a ridiculous essay, and also if my tone is annoying or feels patronising - I am ND and I know I often sound didactic and bossy, but when I try to make gentle tentative suggestions etc I just sound horribly head-tilty and fake, I can't bear to hear myself.
I'm also very aware that this could all read as another fucking exhausting To Do list from someone who has no idea what you live with and how little you have left. The life you have created for yourself sounds pretty wonderful to me and I know you will have worked with intention to achieve it - but I also know that those capacities can be completely used up, finished, by the experience of pain/trauma. I'm sorry if this feels like a kind of stick. I did hesitate before posting but decided that there was an equal possibility of you find something useful here.
Also aware that you might not share any of my intellectual interests and that therefore my suggestions re philosophy could come across as patronising wankerness/ dick-swinging. Really really sorry if so - I'm genuinely mentioning them in a take-it-or-leave-it way. If I'd been helped by religion I might throw that it too - please do take it in that spirit and bat it off if it's just bollocks from your POV.
Anyway. I think as much as anything I wanted you to know that I and others had heard what you said and were thinking about you.