It is, for some. But not for others:
Four years ago, Nick had eight weeks of counselling after telling his GP he had suicidal thoughts. ‘This really helped me mentally, but it hasn’t stopped me wanting the operation,’ he says. So far he has raised £856 to have the surgery privately. He believes that giving him the surgery would be more cost-effective for the NHS than the numerous appointments and procedures he has undergone.
You'd think they'd agree. But this isn't someone who wants to be another gender. It isn't even someone whose mental illness takes the form of believing his leg 'doesn't belong' to him.
And doctors won't tolerate being wrong:
In 2016, Hope Gordon raised £10,000 to have her leg amputated after ten years of suffering from complex regional pain syndrome (CRPS), a poorly understood condition that causes severe, long-lasting pain. She ended up in a wheelchair, taking strong painkillers and sleeping only two hours a night. She decided an amputation was the only option, but her doctors disagreed, saying they couldn’t guarantee the pain would go.
Hope had the surgery privately, and has since become a national-level swimmer, a Paralympian canoeist and a Nordic skier.
Can't have that happen again, clearly!
As someone who has suffered with CRPS (so long now it was still RSD when I was diagnosed) for ‘well’ over ten years, I actually agree with the doctors here.
ReplyDeleteIt's a 'weird' condition, a minor injury (in one case I am familiar with, it was triggered by nothing more than a boil) leads ‘somehow’ to a 'rewiring' of the sympathetic nervous system, with every pressure and heat sensory nerve in an affected limb firing continuously and being experienced as pain (remember the last time you had pins-and-needles, now imagine that every 'tingle' is agonising pain and it's 24/7/365 for years). Pain killers don't work, there's no cure or even treatment to minimise the agony, and thus ... the '5 year survival rate' (how many are still suffering after 5 years) is listed as <13%. It's not terminal as a condition, just agonising (i.e. 87+% who 'get' it, cannot cope with the never-ending, constant, unrelievable pain and choose to 'end it').
But no-one knows what causes it, or even where it is acting (at the sensor level? spinal cord? brain stem?), and ... what works to ameliorate, or (very rarely, seemingly) 'cure' it for one individual sufferer, doesn't work for 'anyone' else. The few cases of random treatments that appear to succeed could simply be purely coincidental examples of the very rare seemingly ‘spontaneous remissions’ that occur occasionally (these spontaneous remissions are one of the few ‘facts’ that allows me to continue in the ‘hope’ of ever having a normal life again, and thus to keep-on-keeping-on through the agony).
What is known (as shown by the previous name including dystrophy) is that any deterioration is caused by the refusal/inability to continue using the limb (it’s why I have continuously refused a wheelchair – as a known death sentence, or even home care assistance, as not being able to do something – or as so often happens ‘lying on the floor in a feta ball, unconscious’- is preferable to the gradual withering/wasting away the alternative offers).
So? People clutch at straws (I've personally tried everything from hyperbaric chambers to crystals, and more meds than I care to remember) but there are many multiple cases where amputation leads to ... no change (and the suicide rate post amputation failure is even higher than before).
I’ve been suffering with this so long I was actually offered amputation early on (as not having been proved by then, at least in the UK, ineffective) but thankfully had access to the data via the international association. Now, are you going to allow someone to amputate a limb when the chances are millions to one against any possible benefit? And no, the person will literally do anything, to stop the pain, and any suggestion (and someone ‘will’ have sold them the idea) 'will' be leapt upon (however extreme or even provably wrong). I’m only aware of one (cited) example of a ‘success’ (and still doubt the validity of the initial diagnosis) but can cite hundreds of failures.
It’s difficult, especially when I can guarantee (even with the description) you can have no idea what a sufferer goes through (I was a pain control specialist nurse before, and had not the vaguest inkling such pain existed until I started experiencing it) but … in some ways it is ‘similar’ to the whole trans cult – and so, do you believe it is a persons ‘right’ to ‘chop off their junk’ if they believe it will make them feel better? Especially when all the evidence shows that the presence or absence of said ‘junk’ has little to no effect on the actual ‘illness’? If not, then why are you suggesting it is appropriate I this case?
Penseivat, to Anon of 2.14,
ReplyDeleteNever having experienced this myself, an old (as in knowing him a long time) Army colleague suffered from this after an industrial injury affecting his leg. He claimed that deep hypnosis worked in that his brain refused to accept the pain was there. It took a fair number of sessions and wasn't available on the NHS at that time (no idea if it is now), but he says it was worth it. Perhaps you should check with your GP for a list of qualified hypnotherapists? Hope it helps.
Penseivat
DeleteThanks for the thought, but already been there, done that, T-shirt, etc. and yes, I had to pay for it like almost every therapy and even most medications I’ve trialled. The ‘vaunted’ NHS, as per usual, only offers … well, not very much, preferring to sweep us under the carpet (after the basic paracetamol and sticking-plaster scenarios are exceeded) and hand us off to social services (or probably/preferably the mortuary, as long as we go quietly) . FYI, I (mostly) don’t ‘randomly’ select some weird ‘cause’ but generally rely on either what the world's leading CRPS research centre, in Newcastle, Sydney, recommends, or what someone, somewhere, has used with some success – so far without any success.
I’m ex-forces too, and my injury was getting a 5.45 to the knee (at the time a ‘good’ thing as it turned me sufficiently, in collapsing, that the follow-up 12.7 'bounced' obliquely off my SAPI instead of … ‘splattering’ me. As one of my sergeants said, a moment that reminds you that “adrenalin is brown and runs down your leg”. I have the plate mounted on the wall besides me as … a reminder). It started healing quite well, I was off meds and well into physio when … it triggered and everything went pear-shaped. [MOD has been surprisingly, ‘unofficially’ at least, supportive, even after all these years. My hyperbaric trial was courtesy of a Blackhawk ‘side-trip’ flight back down to Lympstone].
Hypno, mirror-therapy, etc. aren’t “cures” or even “therapies” really, but are more “coping mechanisms”, helping you ‘manage’ the pain. You get real good at coping with levels of pain, that would have formerly had you curled up in a ball, real quick (or, the majority it seems, ... don’t). It’s amazing what can become ‘normal’, that Solzhenitsyn guy (in “The Prisoner”) had it right.
Now you know why I (occasionally) give such short-shrift to all the whining babies out there complaining about how hard they have it.
Oh, I should state that rather than the (wonderful!) NHS completely writing (us) me off, I get a yearly assessment where my GP (and every two years a 'benefits' doctor) come and ask me ... if I'm feeling suicidal yet (then walk away looking somewhat ... disappointed). I'm not kidding.
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