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kaberettOn Friday afternoon I attended an introductory information session being run by the hypermobility clinic. This was useful in several respects (the factoid that the average bendy person needs to be twice as strong as the average non-bendy person to compensate for joint laxity; the articulation that part of the problem is that bendy folk tend to do everything at much greater extension than non-bendy people, meaning we make isolated joints do all the work that non-bendies use entire systems to carry out; the introduction to the set of services other than individual physiotherapy that are available via the clinic), but it also managed to hit a lot of my buttons about how discussion of chronic pain gets framed in the NHS and in the medical world more generally.
Particularly, every pain specialist I've interacted with to date -- and quite a lot of the non-specialists with whom I discussed pain -- have been absolutely insistent that chronic pain, i.e. pain lasting more than three months, is a neurological artefact with no basis in physiology: much as having one episode of depression increases the risk of subsequent episodes by setting up or strengthening neural pathways involved in depressive thinking, once you've been in pain in some area of your body for long enough your brain starts interpreting any and all stimuli to that part of your body as pain regardless of whether that's a useful or reasonable response. This can be incredibly limiting if you're used to interpreting pain as a sign that something's wrong: if you're afraid you're doing yourself more damage every time the thing hurts you can end up with severely curtailed activity and pervasive anxiety, neither of which are helpful.
This is fine as far as it goes.
The problem is that I'm not afraid of pain, not any more. I've experienced pain so bad I've been on the verge of blacking out; I've (routinely!) been in pain so bad I retain no experiential memory of it (I know it happened, but I've got no emotional reaction to the concept -- no ability to recall how it felt as opposed to that it happened in a detached and neutral way); fundamentally there are limits to how much worse it can get in such a way that it will matter to me, particularly, in terms of things my body can do to me left to its own devices.
So that's one respect in which I'm not afraid of pain. The second part is that I'm at this point very used to the difference between "this is pleasantly sore because I've been working" or "this is continuous grumbling background pain that doesn't signify anything is more wrong than usual, so I can safely ignore it" and "this is pain related to a specific physiological change, usually my period" or "this is unusual pain potentially indicative of something going majorly awry and it needs attention paying to it". Identifying those distinctions and gradations is something I am very, very good at, not least because I have to be: I can now reliably identify the pain that, for example, indicates I've got an ovarian cyst growing and preparing to burst, so it's a flavour of pain I can distinguish from "something is unusually wrong in a way that might indicate ovarian torsion, for which I am at high risk and which requires emergency surgery".
(The third part is that I seek out sensations normally conceptualised as "pain", that I'd describe as "loud", particularly if I'm in sensory overload, because I find them soothing and calming and grounding and pleasant. They reorient me to reality. I am not afraid of the kinds of pain my body can inflict on me.)
What I'm wanting help with, from a pain clinic or from pain management courses and so on, is not learning how to accept and live with and not be afraid of the grumbling background pain (or even how not to be afraid of the flares): I've got that down. I do self-led mindfulness (with variable consistency); I do working with and through pain as best I can. I absolutely do not need to be told that my pain has no basis in physiology (the parts I care about unambiguously and unequivocally do), or that I shouldn't be "letting" the pain "make [my] life shrink down to nothing" (1. that's profoundly insulting and 2. it is an astonishingly naive approach to "I routinely hit a 9 on the functional pain scale and cannot move until the codeine kicks in unless I want to risk uncontrolled falls"), or that I should be tapering off my pain medication various (try it if you like, mate, but I fucking loathe taking pills, and I assure you that stopping or reducing any of the drugs I'm on leads to an immediate marked deterioration in functioning).
What I want is help to not have those pain flares in the first place. (This isn't possible short of major surgery: while I have ovaries they're going to keep sticking doggedly to a menstrual cycle, in the face of the strongest drugs available used to induce chemical menopause. We have established this empirically. On which topic, my pain goes away completely when I'm properly down-regulated: please do tell me more about how it has no physiological basis.) Given that I'm having them, I want help maximising my function during them, and minimising the resultant fatigue.
And nobody I've met in the NHS so far seems interested in doing that. The best I've had is "welp, looks like it kinda sucks to be you" -- which is at least respectful of me in a way that the pain specialists more-or-less uniformly haven't been. (I am wryly aware that at some point in the probably not-too-distant future I'm going to look back on how much I use italics and cringe.)
In six to eight weeks I'll attend a two-hour introductory session to the suite of pain management courses UCH offers. At the end of it, I'll request a referral; at some point after that I'll have an assessment with a psychologist and a physiotherapist, who'll be looking to establish whether I should be looking at the abdominal pain course or the hypermobility course or, as the case may be, something else altogether. My ideal outcome is naturally that they'll tell me that one of the intensive courses (eight days over about six weeks) will be suitable, will address my position and my needs, and send me on my way; that's highly unlikely, however, so what I'm actually hoping for is that they'll listen to me and believe that I'm competent and give me thoughtful advice on what I should be doing next and then discharge me from that pathway.
At which point I will -- again, hopefully -- have had sufficient one-to-one physio that beginning the exercise programme is a sensible option. We're offered four gym sessions, three Pilates sessions, and three pool sessions, with the option to shift the balance around, and twenty weeks to spread them out over. Targeted advice that takes into account hypermobility sounds pretty excellent, to be honest; I'm likely to avoid the pool sessions pretty hard (because long hair and because dysphoria) but I'm very interested in the Pilates, and learning how to do weight training in a way that won't fuck my joints up has been on the dismissed-as-unattainable wishlist for Some Time.
So it's progress. It's very frustrating progress and I expect to spend most of the pain management introductory session on the edge of furious tears, and several hours in the aftermath coaxing myself back down from adrenaline and fear and unnecessary self-doubt, but nonetheless: progress. Sort of.
Resources recommended during the session
Particularly, every pain specialist I've interacted with to date -- and quite a lot of the non-specialists with whom I discussed pain -- have been absolutely insistent that chronic pain, i.e. pain lasting more than three months, is a neurological artefact with no basis in physiology: much as having one episode of depression increases the risk of subsequent episodes by setting up or strengthening neural pathways involved in depressive thinking, once you've been in pain in some area of your body for long enough your brain starts interpreting any and all stimuli to that part of your body as pain regardless of whether that's a useful or reasonable response. This can be incredibly limiting if you're used to interpreting pain as a sign that something's wrong: if you're afraid you're doing yourself more damage every time the thing hurts you can end up with severely curtailed activity and pervasive anxiety, neither of which are helpful.
This is fine as far as it goes.
The problem is that I'm not afraid of pain, not any more. I've experienced pain so bad I've been on the verge of blacking out; I've (routinely!) been in pain so bad I retain no experiential memory of it (I know it happened, but I've got no emotional reaction to the concept -- no ability to recall how it felt as opposed to that it happened in a detached and neutral way); fundamentally there are limits to how much worse it can get in such a way that it will matter to me, particularly, in terms of things my body can do to me left to its own devices.
So that's one respect in which I'm not afraid of pain. The second part is that I'm at this point very used to the difference between "this is pleasantly sore because I've been working" or "this is continuous grumbling background pain that doesn't signify anything is more wrong than usual, so I can safely ignore it" and "this is pain related to a specific physiological change, usually my period" or "this is unusual pain potentially indicative of something going majorly awry and it needs attention paying to it". Identifying those distinctions and gradations is something I am very, very good at, not least because I have to be: I can now reliably identify the pain that, for example, indicates I've got an ovarian cyst growing and preparing to burst, so it's a flavour of pain I can distinguish from "something is unusually wrong in a way that might indicate ovarian torsion, for which I am at high risk and which requires emergency surgery".
(The third part is that I seek out sensations normally conceptualised as "pain", that I'd describe as "loud", particularly if I'm in sensory overload, because I find them soothing and calming and grounding and pleasant. They reorient me to reality. I am not afraid of the kinds of pain my body can inflict on me.)
What I'm wanting help with, from a pain clinic or from pain management courses and so on, is not learning how to accept and live with and not be afraid of the grumbling background pain (or even how not to be afraid of the flares): I've got that down. I do self-led mindfulness (with variable consistency); I do working with and through pain as best I can. I absolutely do not need to be told that my pain has no basis in physiology (the parts I care about unambiguously and unequivocally do), or that I shouldn't be "letting" the pain "make [my] life shrink down to nothing" (1. that's profoundly insulting and 2. it is an astonishingly naive approach to "I routinely hit a 9 on the functional pain scale and cannot move until the codeine kicks in unless I want to risk uncontrolled falls"), or that I should be tapering off my pain medication various (try it if you like, mate, but I fucking loathe taking pills, and I assure you that stopping or reducing any of the drugs I'm on leads to an immediate marked deterioration in functioning).
What I want is help to not have those pain flares in the first place. (This isn't possible short of major surgery: while I have ovaries they're going to keep sticking doggedly to a menstrual cycle, in the face of the strongest drugs available used to induce chemical menopause. We have established this empirically. On which topic, my pain goes away completely when I'm properly down-regulated: please do tell me more about how it has no physiological basis.) Given that I'm having them, I want help maximising my function during them, and minimising the resultant fatigue.
And nobody I've met in the NHS so far seems interested in doing that. The best I've had is "welp, looks like it kinda sucks to be you" -- which is at least respectful of me in a way that the pain specialists more-or-less uniformly haven't been. (I am wryly aware that at some point in the probably not-too-distant future I'm going to look back on how much I use italics and cringe.)
In six to eight weeks I'll attend a two-hour introductory session to the suite of pain management courses UCH offers. At the end of it, I'll request a referral; at some point after that I'll have an assessment with a psychologist and a physiotherapist, who'll be looking to establish whether I should be looking at the abdominal pain course or the hypermobility course or, as the case may be, something else altogether. My ideal outcome is naturally that they'll tell me that one of the intensive courses (eight days over about six weeks) will be suitable, will address my position and my needs, and send me on my way; that's highly unlikely, however, so what I'm actually hoping for is that they'll listen to me and believe that I'm competent and give me thoughtful advice on what I should be doing next and then discharge me from that pathway.
At which point I will -- again, hopefully -- have had sufficient one-to-one physio that beginning the exercise programme is a sensible option. We're offered four gym sessions, three Pilates sessions, and three pool sessions, with the option to shift the balance around, and twenty weeks to spread them out over. Targeted advice that takes into account hypermobility sounds pretty excellent, to be honest; I'm likely to avoid the pool sessions pretty hard (because long hair and because dysphoria) but I'm very interested in the Pilates, and learning how to do weight training in a way that won't fuck my joints up has been on the dismissed-as-unattainable wishlist for Some Time.
So it's progress. It's very frustrating progress and I expect to spend most of the pain management introductory session on the edge of furious tears, and several hours in the aftermath coaxing myself back down from adrenaline and fear and unnecessary self-doubt, but nonetheless: progress. Sort of.
Resources recommended during the session
- Living with Chronic Pain (CD -- mindfulness meditations light?)
- British Pain Society
- UCLH pain management resources
- Hypermobiliy Syndromes Association
- Ehlres-Danlos Syndrome Support UK
- Allied Health Professionals Group of the British Society for Paediatric and Adolescent Rheumatology (BSPAR, 2012)
(no subject)
Date: 2016-02-23 10:55 pm (UTC)(no subject)
Date: 2016-02-24 01:35 am (UTC)(no subject)
Date: 2016-02-24 02:07 am (UTC)I had a similar problem with Medway's pain management physio clinging to the it's all neurological argument (as did pretty much everyone else on the course). I got her to admit that's a problematical argument in people who are constantly re-injuring themselves because bendy, and you have stuff going on over and above that. ETA: This was the one issue I had with the course, other than that I thought it was spectacularly good.
Further editted to add: a lot of people on the course interpreted "it's all in your CNS" as "it's all in your head", and there was considerable disgruntlement at break time. So maybe prep yourself for that going on.
One thing Medway were very good at: absolutely no pressure to reduce medication (there might have been a comment that the course might allow you to consider it, but no more). In fact one guy managed to corner the consultant (helped he knew him personally) and get himself transferred onto one of the newer drugs that had been mentioned (and that was spectacularly effective, he even talked differently the next week).
I had Medway's version of the intensive course, and if I was a candidate for that, you should be for theirs (bar UCH specific stuff I don't know about).
I managed to get on the local Adult-Ed Pilates taster a few years ago (the actual Pilates courses are always massively oversubscribed by the time I can organise myself to apply). I got the feeling it had the potential to be massively useful, but it was just an hour or two's taster. (Slight caveat, I got half-way home and had to pull over, I suddenly felt like crap and it was definitely Pilates related, it only lasted ten minutes, but maybe have a contingency plan).
It might help to discuss the problems with 'it's all in your spine' being triggering with the psychs doing the assessment. If they know it's an issue in advance, and particularly that you have ongoing actively pain-generating conditions over and above the bendiness, they may be willing to work around it.
(no subject)
Date: 2016-07-21 04:50 pm (UTC)I agree and disagree with there movement things, I'm a trained dancer, I'm body aware, I can't think of any routine thing I do by over extending one thing rather than moving through my entire body, however if I pass you a plate of food that's still two joints in each finger, knuckles, wrist and it's complexities, elbow, shoulder, back etc. some of which want to go in the opposite direction, none are locked out or hyperextended, the muscles required to do that, well, I'm tired just thinking about it.
I do pretty well on a moderate dose of opiates, yep i'm disabled, but pain doesn't keep me awake at night, which is what I said to the doc at pain clinic, sleeping tablets for pain wouldn't work and would be destructive much faster that just treating the pain.
(no subject)
Date: 2016-07-21 07:21 pm (UTC)It was Medway's specialist physio who diagnosed me in the first place, and that at the first assessment prior to confirming my place on the pain management course.
(no subject)
Date: 2016-02-24 09:17 am (UTC)Their biggest problem, especially given the difference a wheelchair makes to my functionality is their only sort of accessible accommodation and how insistent they were on trying to get me to walk more.
(I'm sorry. If I use my chair I can drop a permanent 7 to 3, and I retain executive function as a result. Use my sticks for two days in a row outdoors and I push a 9 and nothing gets done even with the painkillers I don't normally take! That's a significantly better pain improvement than I get with anything chemical!)
(no subject)
Date: 2016-02-24 11:13 am (UTC)(I haven't had pain as bad as you describe, but i did manage to have a bleeding gastric ulcer and not realise it, because the amount of pain it caused was not significantly greater than my baseline level of pain at the time.)
<3
(no subject)
Date: 2016-02-24 03:08 pm (UTC)(no subject)
Date: 2016-02-25 02:50 am (UTC)(Imho it's less an issue of naivete and more an issue of it making very little sense.)
(no subject)
Date: 2016-07-25 07:59 pm (UTC)Anyway. Glad to hear about progress. Sorry for slight thread-necro; Back at old PC makes a lot of difference for how we access internet community spaces.
Tri
(no subject)
Date: 2016-08-10 11:27 am (UTC)(no subject)
Date: 2016-08-14 11:54 am (UTC)(no subject)
Date: 2016-08-14 11:59 am (UTC)