Weird sensation when doing physio to try and activate very unused muscles

[MiscellaneousAssortment]

Just wondered if anyone else has had this feeling or knows what it is?! The best I can describe it is as a gut 'ugh' and shudder reaction! Not pain in the parts of the body I'm working on (calf muscles, ankles etc), but a weird sensation which is like the shudder of dry cotton wool squeaking on teeth, (nails on chalk board etc)... Am I totally weird or is this 'a thing' or explicable in some way?

For context: I started some very gentle Physio rehab this week, which am very hopeful about. The Physio is very good and experienced at errr, difficult cases! Trying to start from a very low point indeed, I'm substantially disabled and can barely stand for a few seconds let alone walk, but having got some of the underlying issues as sorted as they can be, I'm starting out again on the physio thing. Years ago I tried to work my way out of my illness when my body started to go wrong and just managed to precipitate myself into a drastic deterioration instead. Physio, Pilates, aqua swim, hydrotherapy all multiple times a week on top of an intense job and a baby, loads of hard work and believing if I just tried hard enough I'd 'beat' it, which was a rather big error of judgement. This time I'm more expert at my own limits and the way my body sneakily recruits every and any other muscles to do the job of the muscles that need to start working again. Physiotherapist is much more informed too. So starting small. Actually I saw her first a few months ago and she suggested heel raises and going from sitting to standing better, and even that was too much for my reluctant body, so she's now gone much smaller and more focused e.g heel raising but no weight on them, and lifting my lower leg just 2-3 inches up and down ... So very careful and not worried that I'm overdoing it.

Anyway, that's just background really, but doing the exercises she's given me makes me actually vomit! It's like a nails on a chalkboard feeling when I'm trying to do them and I feel so nauseous I'm sitting here with a vomit bowl on my lap as I try and make my muscles move again.

What is it? Any ideas? And if I push on through will it fade? I'm pretty sure it's not related to the conditions I have, and instinctively I feel like it's something to do with trying to force my body to work in ways it doesn't know how to do anymore?

I think I can imagine your feeling. If I start moving a 'dead leg' it can be quite a yuck sensation. Is it possible to distract yourself? Or is there a way to do the movement passively till.your body gets the feel of it? I see your threads and know the debilitating nature of your condition (I have you on my spreadsheet Misc!Ha ha - kidding). Your physio sounds willing to adapt and scale down which seems promising. I don't see why it wouldn't fade out with repetition and I doubt you're moving the part in ways it's not designed to go, but the human body does seize up if it's not used fully. Good on you for working at it!

Hello fusspot and thank you for not confirming that I'm crazy :)

I hope I'm on the good side of your spreadsheet! Please not the goady fluffers and fools column

I'm hoping it wears off, so difficult when your body lets you do really damaging things without a murmur, then kicks up a storm when asked to move a tiny bit in the way it was designed to. Argh! Yet if I just ignore it and do the opposite, it's called not pacing and oh boy do I suffer the consequences. Double and triple argh!

However, I'm keeping the faith and going into this with fingers, toes and everything crossed.

I feel like I can tell the physio when I can't make it work, and also that I can be imperfect, to go back on my word when I've realised I've got it wrong, in a way that other medics just wouldn't get. For example I'm so used to having to disassociate from pain and my body I often take a looong time to work out what's going on, and feeling obliged to have reasons and present a coherent image to people that I make guesses which are often not right. I'm actually writing that down so when I reread this it will prod me to keep this up and not fall into old ways out of habit.

And in that mode: I was wary about saying I couldn't do the sit to stand exercise, as I thought she'd think I wasn't being constructive enough, making excuses etc. but was so useful when I did explain, because I trapped nerve kicks in as soon as I try and stand up using normal muscles, and I end up keeling over onto the floor before I even realise what's happening. But she just got on with working out another way of getting to those muscles.

It's slightly strange actually, as this physio is actually someone who was very much of the same ilk years ago as the people who gave me such terrible advice. I met her in that dark dark time, and she was one of the many professionals who claimed to be 'an expert' in EDS when what they really meant was that they 'had an interest' in it.

When I was referred back to her I was somewhat skeptical to say the least.

However, in the half decade since she's changed into an actual expert - rather life affirming actually!

AND she has a real sense of understanding about what being so ill is, and how it's so much more than whether you can move a limb in the required way when on an examination table, and it's about the consequences as a whole or even just understanding that doing something today can mean complete break down of body for the week, month after etc. Such insight has me rather stumped and amazed, I've not actually encountered anything like it before!

She refused to do ANY physio with me until I'd got other stuff sorted... which was so wise, rather than just trampling through all my problems and insisting I ignore them. But she didn't just turn me away, she kept me on her books by giving me the most far out appointment she could and checking if I needed it to be a phone appointment depending on what was happening for me at that moment. And my final rave about this woman is that she then chased up and expedited referrals!!! For neurology, syncopy, neuro-surgery, she even phoned up my GP to get him more on board. Slight hero worship moment, but only on here as I suspect she'd hate it in real life!!!

Anyway, sorry I digress, beings you know me and my boring body! I'm a waffler, that must be in the mental spread sheet!

She sounds like one in a million!

Bleugh, plucking up courage to do more physio again...

I totally get what you mean.

I developed GBS last summer and was paralysed. Much rehab learning to sort of walk again/function and was out of hospital finally in Dec. Now I can walk and do stuff, lilke you I decided on the pilates/swimming etc, physio explained I need the nerves to fully recover first then gentle exercise. Most of this is building muscle due to being paralysed, in bed for 10 weeks my nervs hav mostly recovered.

In answer to your worry, yes I feel sick, specifically moving legs/walking or moving my arms right back. Initially standing to sitting... my God. SO HARD!! It's the leaning forward in order to heft yourself up. It's a miracle people ca do it.

She was moving my leg yesterday and I felt exactly as you describe except I wasn't actually sick. I think it is a balance thing which comes from having weak muscles. I am dizzy when I walk distances (shops and back ) but not at home at all.

Good luck op, I'm here for a miserable moan anytime!

ps. being mentally strong really helps, but you are so right, it can only help so far.

I'm sorry you are going through similar, but slightly glad that it's a 'thing'!

A friend in rl has also confirmed she's had it before, though more the nausea than the shuddering ugh thing.

It's also slightly like I'm attempting to move objects with my mind - superhero style. That bit in pretty much any superheroes origin story where they attempt to get control over their powers... move pencils by the power of their minds kind of thing!

I feel like I'm pointing my mind in the direction of calf muscles and they're limply twitching occasionally ... Use the force Luke... Mr magoo spouting cryptic one liners... Mixing films together rather!