[healthwork] Physio edition

[kaberett]

I am balking quite hard at the idea of doing all my physio. Part of the problem is that I've not been given clear guidance on minima and maxima with respect to the hand exercises (how many repetitions I should be doing); some of it is that I'm explicitly encouraged to spread it out through the day instead of doing it in a single block (to reduce muscle fatigue, which is a nice idea but doesn't interact well with issues of executive function and task-switching); some of it is that I got given a very woolly indication as to which bits it's "okay" to cut down on if I'm tired/not managing/etc; and part of it is that the hand therapist has cheerfully told me that we're working toward not splinting at all, as an eventual goal, and the idea just makes me want to cry because splints make my hands hurt less and stop me hurting myself and I'm already consistently exhausted as it is and I genuinely have no idea how the hell I am ever going to be able to e.g. make pastry without hyperextending my joints in a way that damages me without having the physical reminder that my hands aren't meant to do that. I don't see why it's incompatible to work on increasing my strength to do the things I want to do well and intend to keep using the splints to prevent hyperextension. And the physio told me that it's expected to hurt and that's okay, and failed to make an adequate distinction between "expected soreness from working muscles" and "pain indicating that something is wrong and you should stop", and my right wrist's been bad anyway this past month (in the "intermittent numbness in some of my fingers" sense), and...

I'm only just managing to stand on one leg for 45 seconds three times a day for each leg. It takes six minutes in and of itself, but it takes me at least half an hour to scrape together the cope to actually do it and I'd be much less consistent about it if A weren't prompting me, even with automatic digital reminders.

And I'm about to get given a whole bunch more leg and torso physio and I've not even had my appointment letter for podiatry come through yet and I seriously just want to cry at the idea of how much time and energy and executive function this is going to eat up.

I've not done any hand physio since my appointment on Monday because I just freeze up every time I think about it. So at least I'm getting it out of my head and writing it down, and hopefully writing up the list of things I'm supposed to do under the next cut will let me start to work through doing them, because I am so overwhelmed I have just been completely unable to look at the information sheet.

(And I still haven't been given a new PIP assessment date.)

... okay, he wrote down slightly more useful directions than he was willing to give me verbally. Okay.

Start with fingers and wrist straight every time.
Do 2-3 sets (per day; presumably per hand) of 10 repetitions (per set), holding for five seconds each repetition.

Squeeze sponge with all fingers and thumb
Squeeze sponge between thumb and side of index finger

Press thumb against each fingertip in turn (mindful of shape; try not to move thumb much)

From loose fist, move thumb away from fingers keeping level with index finger
+ add resistance on side of thumb (eventually use hair tie; currently just use other hand)
+ ditch lateral motion; add resistance on top of thumb


Without splints:
- bend fingers at top two knuckles only into hook
- bend fingers at bottom two knuckles only into fist

Comments

[sfred]

I found the quantity of physio stuff I'm meant to do so overwhelming that I have fallen back into not doing any at all*: I hope you are able to find a routine that works for you.

*I have basically replaced it with swimming at every possible opportunity, which works better for some joints than others but at least I am doing it.

[kaberett]

*nod*

-- for now I've settled on aiming for one set of hand stuff per day, plus the one set of leg stuff, on the grounds that it's Better Than Nothing, so.

[sfred]

That sounds right to me.

talking some about my own approach

[redbird]

I hate it when medical people don't seem to recognize that there's a difference between "that hurts, but it's okay in this context" and "that's your body telling you to stop." Physio is difficult in part because my usual "it's muscle pain, okay to keep going" versus "joint pain, probably should stop" exercise distinction may not be useful.

My current approach to exercise, which might or might not be useful for your shape of executive function problems, is to do as much as is feasible in one lump, making a list as I go, and then do more of my exercises when/as I think of them and am physically up for it. But that's in the context of the physio having said that most of this stuff should be done only every other day, so I can start by looking at the previous day's list and seeing what's left for today. Also, I'm past the acute stage, so the physio has been mixed into my old exercise routine, as maintenance.

Finally, I am not a doctor, but I don't see an incompatibility between doing physio to make your hands hurt less, and having the splints as reminders even when your hands don't hurt, either. I don't know whether your physio is coming at this from the cheerful ignorance of someone who has never dealt with anything chronic himself, or if it's a category error, and he's missing that the same handrail can be both a physical support for some people, and a reminder for everyone not to step over the edge.

Re: talking some about my own approach

[kaberett]

So part of the reason I'm feeling a bit shaken and overwhelmed is that my hand physio does have visibly hypermobile hands himself and has demonstrated this -- I just... he's also very definitely at "flexibility is part of the normal range of human variation, it's entirely possible to be hypermobile without any problems", and... yeah. Oof.

I have worked out what I actually want to keep track of all the physio I'm doing; now I just have to work out whether someone else has already made it exist.

Specifically, I'm after an additional app I can stick on the auxiliary internet device, that will let me say what an exercise is and how many sets I should be aiming for in an ideal world, and let me tick those off on a day-by-day basis and keep a record. So I'd have something that looked like:

                         LHS                    RHS
squeeze fist         [x] [ ] [ ]            [x] [x] [ ]
press fingertips     [x] [ ] [ ]            [x] [ ] [ ]
balance on one leg       [x]                    [x]

... but a cursory poke of the Internet hasn't turned one up.

Re: talking some about my own approach

[davidgillon]

Yes, many people are hypermobile without issues, it's well known, and it's used as a stick to hit us with. There are two sets of hypermobile types, those with no issues (yet), and those who do have issues. You really would hope he had noticed which group gets referred to him!

WRT physio-logging, mostly I just use a spreadsheet.

Re: talking some about my own approach

[kaberett]

Yeah, issue with a spreadsheet is (1) I'd end up with one tab per day, which rapidly gets ridiculous, and (2) I do all the rest of my health tracking (and have all my physio timers!) on the auxiliary internet device, so it'd be nice to have it all in one place :-s

Re: talking some about my own approach

[davidgillon]

WRT the AID, no Open Office clone or similar?

What I did last year when I was doing shoulder physio (which I seriously need to restart given current symptoms) was a spreadsheet with one row per exercise, and multiple columns per day for left and right and reps, that would get it to about one tab a month, which is slightly more manageable, but I take your point in wanting something that exploits typical app functionality.

Re: talking some about my own approach

[kaberett]

HAHAHA THE OPENOFFICE APPS ARE ALL TERRIBLE AND CRASHY.

*nod*, will bear this in mind as an option.

[davidgillon]

There's this theory in EDS management that splints are evil and inevitably lead to muscle wastage. I don't agree. I wore a hard collar 24-7 for a decade, because otherwise my left arm stopped working and the pain levels went to 8. I spontaneously stopped using it when I started using crutches and discovered it had been my gait which was aggravating the neck and stopping it from healing. It gets pulled out of the cupboard whenever my neck becomes an issue (such as this week), but mostly you would never know my neck spent an entire decade splinted. Similarly I picked up a pair of AFOs from Amazon, because I figured they might help with my floppy and sprain-prone ankles. They do,I wear them when I need them, don't when I don't, and my ankles are no floppier than before.

Physios are indoctrinated that long term braces are evil during their training and I don't think they ever really get past that. Of course for those of us living with EDS there's a whole other side of the story that Physios never see, and braces can be massively useful.

So when he says "we'll get you out of those, just nod, and ignore him.

And if the intersection of your limited executive function is causing problems with his exercises,then you are perfectly entitled to tell him so (admittedly this takes yet more cope) His job is to work around all of your disability issues, not ignore the ones that aren't directly related to your hand issues.

[kaberett]

The upsides (such as they are) are that (a) this guy has hypermobile hands himself and (b) this was session #2, after session #1 was entirely about him getting me splinted appropriately for where I'm at at the moment.

I did try explaining that the autism was a thing; I will see how I manage the exercises I've been given between now and my next appointment in 2.5 weeks' time, and then talk about how to make them more accessible to me.

But ye-ah I am pretty cool in general with the idea of ignoring him in re getting me back out of splints; it's just another layer of tired/overwhelmed on top of everything else. :-/

[fyreharper]

This may or may not generalize, but my OT told me that expected compliance is ~30%. Whiiiich definitely helps me with Still Doing Things even when they are too many to deal with!

[mathemagicalschema]

Oh wow, I had no idea. That makes me feel so much better, thank you.

[kaberett]

Huh. Thank you.

[ewt]

I am unbreakfasted and quite exhausted, so this is probably going to be rambly and unfocused and may or may not be helpful. Posting anyway because I don't trust myself to come back and do it later, and this is importnat.

There seem to be relatively few hand therapists who believe in long-term or prophylactic splinting, and this is infuriating. Fingers don't have many of their own muscles in! So I think a lot of the hand physio is about coordination rather than strength, and a concept that with enough practice you "learn" better movements and start applying them elsewhere.

I know that it's possible to do this because years of piano lessons have given me really good hand position when typing and playing keyboard instruments even though none of the postural training was for typing, such that these activities only really hurt my thumbs (and thumbs, let's face it, are pretty unstable anyway) and sometimes my 4th MCP which is just weird (nobody I've been to about it has ever seen a joint do that before yay!) and nearly unsplintable. I also know how useful these changes are for anything a bit more "real world" than using keyboards, which boils down to "not immediately, for me, but I was starting with really good hand posture habits to begin with, and they do help at least some". I am absolutely rubbish at doing my hand physio exercises. I lost the bit of paper. I haven't found it yet. I wiggle my fingers around sometimes. But I did have a good go at it in 2008, and again more recently.

What helps me more is, er, using my hands more, which is made possible by, er, splinting. I've had most of my current exoskeleton for about a year and I am now at a point where I can start thinking about practising the piano/organ again rather than just turning up for services and rehearsals and relying on being good enough to pick things up, because my hands are getting stronger through use rather than weaker through lack of use; the thumb splints are the most obviously helpful here because I had reached a point where "an hour of leading choir rehearsal = half a day of not being able to grasp things" and now that is simply not the case. And last night I forgot the left thumb splint (which is thermoplastic and doesn't fit well under my gloves) and I seem to be doing all right so far today (though the right thumb is complainy because I haven't put splints on for the day yet; my right thumb is much worse than my left, and as it also tends to hurt in synchrony with the arthritic great toe, I think there is more going on there than pain from hypermobility).

As a piano teacher I do not think anyone is seriously going to do 2-3 sets per day spread out of anything. I also know that little and often is best and that doing some each day is better than doing nothing. So if I were hand physio person (which I am not) I would encourage you to aim for once a day if that's what you have the spoons for, and figuratively pat yourself on the back if you manage five days out of seven. Anything more than that is gravy if you're in this for the long-term rather than to recover from an acute injury (which is what hand therapists mostly see: acute injuries they expect people to recover from, or oh-shit-the-joint-is-deforming from rheumatoid arthritis).

I don't know the numbers, but I expect the vast majority of people who are given physio exercises are massively non-compliant, and physios overcompensate for this by giving steeper assignments, which assumes that overwhelm isn't part of the problem when actually it is. The good thing about it is that if someone really does attempt two or three weeks of following the schedule given, they're likely to see results, which can be motivating; and if the physio has given inappropriate exercises that make something worse, problems become apparent much faster.

I tend to encourage my music students to do what's sustainable for their lifestyle and other commitments, and to be honest about what they're doing rather than saying they've practiced when they haven't. If your hand therapist physio person is sensible he will be happy for you to give feedback about what is sustainable for you. He should listen when you say "this was so overwhelming I didn't do any of it for half a week, so I decided to start with [just one exercise, or just one hand, or whatever], is there any reason this might be a bad idea? [e.g. exercises designed to strengthen/stretch opposing muscle groups]" If he is not willing to work with your needs, use him to get what splints you need now and devise your own schedule for the exercises at such point as you feel they might be useful.

Will I ever stop using the exoskeleton? I really don't know. There are times when it just gets in the way; because of the extent of coverage of surfaces of my fingers, it affects my ability to grip things, and I have lower manual dexterity with the splints than without. Also they make wearing gloves harder in winter, and require gloves for cycling (else they fall off) in summer, which is a serious pain. But for most activities I have "good enough" manual dexterity with splinting, and splinting means much less pain. You are allowed to make the decision on what the acceptable trade-off is, here, and the hand therapist's job is not to judge you for that but to give you tools and information.

For other joints where splinting or supportive bandaging is helpful what I tend to do, if it's sensible (ie it doesn't feel warm/inflamed to the touch and I'm not waking up in pain in the night...I may need to re-calibrate my approach here because that's kindof hardcore), is to have a policy of not starting the day with a splint but waiting until that joint/muscle set starts to feel tired and then adding the splint. This is annoying and requires me to pay attention to my body (hard) but it means I gradually build up muscle strength/coordination while reducing re-injury. No physio has ever instructed me to do this and I do not understand why they have not, because it's pretty workable and tailors itself very well to my actual real-world activity levels.

I do my standing-on-one-leg exercises while brushing my teeth. I seem to need to do them three times a week to stop myself from turning my ankle by walking around. I could probably get more improvement by doing them three times a day, but I am the person who gets to decide what level of effort I want to put in here, and what other things are priorities for me.

[kaberett]

Enormous thank yous for all of this -- this is very very reassuring and soothing. I have "reply to this comment properly" on my mental stack but in case I don't get to it -- thank you.