Other Accountability thread: back pain treatment and ptsd/fibro

[Ecdysis]

So, this is a post because I need some accountability.

I have to deal with (as opposed to avoid/ ignore) the issues regarding problems with my spine.

It's a complicated, multi-layered hot mess and I don't even know whether it's more physical or more PTSD or what.

It's so complicated, I don't even know where to start.

My back is a mess... Has been for decades... I was told in my early 20s by a specialist looking at my MRI results that I'd "end up in a wheelchair".

This hasn't happened (yet) tho I guess it still could.

I'm just going to try and (radomly) list the factors/ issues that I can grasp right now (thank you dissociated brain...)

- Dissociation means that most of the time, I can just magically "ignore" pain, which is not really helpful, because pain is a signal that you're meant to attend to.
- Thanks to dissociation, I rarely, if ever, need pain meds (which I guess is positive)
- When the dissociation doesn't work and I can feel the pain, I usually get quite triggered and can get panicky and dysregulated
- PTSD has given me fibromyalgia, which I assume is due to constant muscle tension all over my body from the stress of carrying trauma. Constant muscle tension 24/7 over decades seems to = fibromyalgia
- My main trauma survival response as a kid was "freeze" (hide, keep silent and perfectly still - that was a (relatively) effective way of avoiding some of the trauma). This freeze response has been etched into every cell of my body and means "movement is danger" = "exercise is danger" = "must avoid any kind of movement, wherever possible". It's super, super, super hard for me to go against this hardwired instinct. Uses up heaps of energy and I feel incredibly exhausted afterwards.
- Thanks to fibromyalgia, I usually feel like I've come down with the flu after exercise, or I get exercise induced migraines.
- I've had a lot of damage to my back... The reports that accompany my MRI results are a very long laundry list of damage. I've got chronic pain and enough nerve damage that some areas of my left leg are numb and some muscles no longer work.
- I'm tall, so that's an additional risk factor for back issues.
- I spend hours of each day dissociated out of my mind and when this happens at home, I always have a "go-to" response - hide away in my bedroom, sitting up in bed. It's not a particularly good posture - it's bad for my upper spine and my lower spine - and I know it massively contributes to the issues and pain that I currently experience. It's my only "true safety" refuge tho and I don't know how to "let go" of it, even if it would be much healthier for my spine.
- When my back started to be a really bad disaster zone in my early 20s, I was on my own (had cut off contact to my family), had raging, undiagnosed PTSD, didn't really know how to fend for myself and got some really bad medical treatment providers, resulting in a) massive worsening of my symptoms and the injuries to my back (including permanent nerve damage) and b) a degree of medical trauma, which has left me avoidant of treatment regarding my back.
- PTSD takes up so much of my energy every day, that my spoons are used up with basic survival stuff, so "chronic back pain" just isn't high enough on my priority list to get any attention.
- Depression makes it hard to motivate myself to do physiotherapy exercises regularly.
- Dissociation means that, since childhood, I don't really have a "relationship" with my body... It's just this "thing" that I try to ignore. The idea of "being in my body" and "attending to its needs" and "doing exercise to keep it healthy" are like concepts from a different language.
- Doing exercise/ physio exercises means I have to focus on my body, I notice the pain, I get triggered, I want to go into avoidance mode.
- My asthma was left untreated as a child (thanks, neglectful parents) so I've never been able to get enough oxygen when exercising, which has left me feeling like "exercise = no oxygen"
- Thanks to PTSD I breathe so shallowly, that even with asthma sprays, I still don't seem to get enough oxygen during aerobic exercise
- This means, I often get exercise induced panic attacks


But...

I recently turned 47, so "now's the time" to fix this as best I can, or it's going to be a painful, shitty, miserable descent into worsening chronic pain with every year/ decade that I age, from here on in.

I've had that "free pass" that being young gives us... Allowing us to treat our bodies like crap and "getting away with it"... But that's run out now.

I had an appt with my orthopaedic surgeon today... and he has a new young colleague who was really great.

He's set me up with an online physio therapy programme - a new online/ digital/ telehealth thingee that my health insurance has started offering. He signed me up for it today (with my consent) and said it takes about 2 weeks for the paperwork to be processed and then I can log in to it.

I'm keen to try it and determined to tell the consulting (online) physio about my PTSD diagnosis and how it impacts my back issues and the potential treatment options.

I hope that by starting this thread, it's going to make me more accountable.

I've probably forgotten half of what I wanted to write about it, so no doubt I'll be adding more stuff as it comes to mind, too.

 

[Ecdysis]

Things I forgot to add above:

- The Dr commented on a certain "poor posture" which I've also had ever since trauma - I kind of "tuck my bum in" as opposed to "sticking it out". Having it sitck out (in a "normal" and healthy posture) feels unsafe to me, whereas tucking it in feels safer. The Dr said I should "improve" this posture, which is another thing where I'll be trying to push against my brain's alarms about what is safe and what is dangerous.

- Whenever I've done exercise in the past, it's something I've mechanically forced myself to do (cos for all the reasons above, my body hated exercise/ movement). So the exercise I forced myself to do had about as much charm as a military drill. I was just doing it because I "should" and because "logically" it "should" make my body healthier. That kind of joyless, mechanical exercise doesn't seem to "help" my body at all tho (surprise, surprise) and my body fights it, trying to get it to stop. So I need to find some way of making movement = genuinely enjoyable, even if that means starting with tiny steps and just exploring whatever feels good.

 

[OceanSpray]

I don’t know if you’re open to suggestions on this thread, but can you do exercises that aren’t exclusively exercise? I also struggle with movement for the sake of just exercising. But things like swimming, hiking, maybe even indoor rock climbing are far more fun.

 

[Friday]

- The Dr commented on a certain "poor posture" which I've also had ever since trauma - I kind of "tuck my bum in" as opposed to "sticking it out". Having it sitck out (in a "normal" and healthy posture) feels unsafe to me, whereas tucking it in feels safer. The Dr said I should "improve" this posture, which is another thing where I'll be trying to push against my brain's alarms about what is safe and what is dangerous

That falls under Core Beliefs… that good posture &/or a touchéd bum = rape. Instead? Of a rapist = rape.

One of the most useful things in my OWN processing rape journey… I was in a wee bit of a vigilante phase, for awhile. So I used to walk down the street essentially naked, except for glitter, high heels, and a smile. Annoyingly often, I got a coat thrown over me, and a cab called (and the bloke didn’t even wait to overhear the address I gave the cabbie). Just some good guy, getting someone home.

It takes a bank robber, to rob a bank.
It takes a rapist, to rape.

Good posture encourages rape as much as being at sea level does. IE. Not one f*cking bit.

 

[Ecdysis]

I don’t know if you’re open to suggestions on this thread, but can you do exercises that aren’t exclusively exercise? I also struggle with movement for the sake of just exercising. But things like swimming, hiking, maybe even indoor rock climbing are far more fun.

Yup, definitely need to do this. I have a dog, so taking him on walks or bike rides is sort of fun... Depending on PTSD/ depression, which can make literally anything un-fun on any given day. I also like dancing. So yeah, definitely need to find a user-friendly definition of exercise and stop allowing the toxic C-PTSD inner critic to define "what is exercise" and "am I doing it right".

That falls under Core Beliefs… that good posture &/or a touchéd bum = rape.

Yeah, I realise it's non-sensical. My body does it automatically tho, 24/7 and has done so for decades. So my point is that it's going to take a lot of effort to try and un-wire that hard-wiring and get my body to adopt a different posture.

- I spend hours of each day dissociated out of my mind and when this happens at home, I always have a "go-to" response - hide away in my bedroom, sitting up in bed. It's not a particularly good posture - it's bad for my upper spine and my lower spine - and I know it massively contributes to the issues and pain that I currently experience. It's my only "true safety" refuge tho and I don't know how to "let go" of it, even if it would be much healthier for my spine.

I think this one is my biggest problem... I've just woken up, had a coffee (sitting up in bed) and am now half-awake, writing this (sitting up in bed). It's suuuuch a bad posture. I truly don't know what to do about it. The thought of "letting go" of this safe space habit makes me want to panic and howl. It feels like my last refuge and like I'm already taking up as little space as humanly possible and now "someone" wants to take that last remnant of safe space from me too? Again, I realise logically that's not what it is, but it's what it feels like. A mixture of panic and sorrow and hopelessness.

Sigh... what do those 3 things have in common? I need to "re-define" things... Re-define what exercise means to me, re-define what posture means to me, re-define what being in a safe space means to me... Those things need a new narrative. Self-care needs a new narrative, the freeze response needs a new narrative, my relationship to my body needs a new narrative... Something kind, compassionate, caring... I think I want to throw up...

Edit to add: I think trauma-informed yoga could be helpful too... There seems to be quite a few videos on youtube for this, which I'm going to check out. Oh and the "cozy cardio" thing on TikTok is something I also want to check out (except that I don't have TikTok).

'Cozy cardio': The latest fitness trend experts actually love

Dread cardio exercise? So did Hope Zuckerbrow. Her effort to turn fitness into a "meditational self-love moment" became a viral workout trend.

www.today.com

 

[Friday]

Yeah, I realise it's non-sensical. My body does it automatically tho, 24/7 and has done so for decades. So my point is that it's going to take a lot of effort to try and un-wire that hard-wiring and get my body to adopt a different posture.

I get that. Just giving you another tool to work on it, with.

 

[Ecdysis]

I spend hours of each day dissociated out of my mind and when this happens at home, I always have a "go-to" response - hide away in my bedroom, sitting up in bed. It's not a particularly good posture - it's bad for my upper spine and my lower spine - and I know it massively contributes to the issues and pain that I currently experience. It's my only "true safety" refuge tho and I don't know how to "let go" of it, even if it would be much healthier for my spine.

Okay, so given this is literally the one huge, massive hurdle that is most affecting my spine atm, I've decided that at the new rental place I will place a sofa *right next to* my bed so that the effort of moving over to sit in a more healthy posture on the sofa is literally me just moving my butt over 50 cm to one side. I will also try working on other, healthier alternatives to this maladaptive coping mechanism, but I know my PTSD limitations - this is always going to be my go-to safe place in times of crisis, exhaustion, dysregulation, whatever, so having a sofa only centimetres away is a totally acceptable crutch/ workaround that will give my spine much needed relief and will hopefully reduce the inflammation. (Both the Dr and I were shocked yesterday at the degree of inflammation - he only had to touch my lower back to have me wincing in pain. Physical therapist had mentioned the same thing, last time I saw him)

Anyway, I need to somehow make a mental note of this sofa hack, so I don't forget it!

Edit to add: depending on space limitations/ room layout, an armchair may do too... (maybe)

 

[No More]

Just thought I’d chime in from a sports point of view as that’s really my lil area of brain cells

Exercise does not have to be hardcore cardio blasting yourself on a treadmill. Sport can be anything you enjoy, from table tennis to swimming, climbing, hiking, kayaking, weightlifting, skateboarding to dance and yoga!

Is there anything you’ve ever thought yeah that looks wicked fun, I’d love to have a go at that? And just try it in baby steps, yanno? Maybe you could learn to skateboard along while walking the dog!

My back is ruined through injury, and I find the absolute best things for it are weightlifting, and core strength. So many people who have back issues (not suggesting this is yours - just that it’s a well known contributing factor to back pain) have weak cores. You don’t need a gym, just preferably a gym mat or a soft bit of carpet can get you started on some very easy core exercises. It’s best to not try and think like right, I’m gonna do an hours workout, just aim for 10/15 mins to start, or while dinner is in the oven.

If you are sociable/prefer group exercise there are millions of clubs that offer taster sessions or ‘back to exercise’ with lots of people who’ll be in the same boat as you, so you’ve got some support and motivation behind you! Personal trainers are also worth their weight in gold. They’ll be able to advise based on injury which exercises are going to be the most beneficial, they can check your form, they can provide you with accountability, and just generally give you some really solid guidance on basic stuff like posture and breathing, and noticing whether your body is even when you lift. The benefits of lifting are amazing, even for things like carrying your shopping correctly so it doesn’t put strain on your back, or picking things up, you suddenly just start doing basic things *better* and the benefits snowball because it gets you out of that vicious niggling cycle.

 

[Ecdysis]

Thanks @No More

I'm thinking that I might look for some kind of martial arts class - Tae Kwon Do, Karate or boxing or something... I suck at letting out anger well in a physical way and while I don't enjoy the "sport" aspect, maybe the idea of accessing my "fight" instinct and doing self-defense stuff might motivate me enough to semi-enjoy the physical/ moving/ sport aspect of it.

Also, if I find a good place, then I guess there'd potentially be some good mentoring there, in terms of the training.

I've also been thinking that I might ask the people at the new rental place if there's any nice swimming pools in the area and if anyone's up for a fortnightly or monthly swim.

I think the main thing is going to be trying to juggle PTSD stuff with exercise... It feels like PTSD ticks so many "no" boxes on almost every type of sport - it feels like an endless list of reasons. I feel like I have to pick the few gaps between all the PTSD crap and start with those and then work my way up from there.

Given that the PTSD/ exercise thing feels so incompatible for me, I guess it might also be worthwhile to work on the PTSD side of that equation. Like, learning to "be in my body", learning to view my body "as my friend", learning to tolerate the discomfort of triggers, learning to tolerate being around other people when doing exercise, learning to prioritise my physical health, learning to be honest to sport coaches and teachers that PTSD is making it challenging for me, but that I'm doing my best and even small results are good progress... Stuff like that.

Oh yeah, and the weak core thing definitely is an issue - if you'd guessed that, you guessed right

I'm glad for you that sport is such a source of joy and feeling alive for you - it's a good reminder for me that some people actually like that shit and do it voluntarily

 

[No More]

Sports pro’s/coaches will 100% understand mental health. The amount of people that start sport at a low level, find it helpful and then persue it up the levels is outright ridiculous - endurance sports are particularly well known for having a very high percentage of people who’ve had trauma doing them, so don’t worry! I think boxing/martial arts sounds like an amazing option!

When I have to be all motivating, I sometimes tell people they can be uncomfortable now for 30 mins a day, or they can be uncomfortable for the rest of their lives. I pick the short term discomfort for long term gains You might find at first if you put some headphones in and blast a bit of music and focus on that, rather than your body it might be easier and less overwhelming. The first few times are always the worst while you are learning the movements and feeling it a bit, but if you can stick at it it gets to be second nature and the rewards are amazing!

Hahah yep, there’s definitely people out there who liveeeee for sport. It’s my literal job, I do it all day long. I am a fierce advocate of women’s sports, accessible sport & the health benefits for everyone

 

[Ecdysis]

When I have to be all motivating, I sometimes tell people they can be uncomfortable now for 30 mins a day, or they can be uncomfortable for the rest of their lives. I pick the short term discomfort for long term gains

Yes, I think I need to focus on this... it needs to become my new mantra... As I said, I'm now at the age of "either I start fixing this NOW or it's going to be one heck of an uncomfortable decline from here on in".

So, I did more exercise yesterday than I usually would... And then at night, I was so sore... And trauma brain is like "Oh no, pain... this is a punishment for doing exercise... I told you that movement = danger!"

I realise logically that it's not that... but trauma-brain is so convincing about these things... sigh...

I'm going to keep going but I guess I should be on the look out for this happening quite regularly at first, until my body starts to adapt.

Either I can talk trauma-brain down at those times, or I may literally take a pain med like Ibuprofen, if I'm finding it too hard to get out of that mindset and the discomfort goes on too long. I basically never take pain meds, so there's no health risk in doing that, and it'll be a useful investment for those times when I can't get trauma-brain to deal with the pain calmly, and as my body will adapt over time, it'll only be a temporary glitch to deal with... (well, hopefully)... and that might help me break through those intense avoidance cycles.

I must say the new orthopaedic surgeon I saw on Thursday was really good about this exercise thing. He didn't do that "shaming" thing that Dr's like to do of "Well, if you did more exercise you'd have less pain...!" He was really gentle about it and just said "Even 15 minutes of basic movement each day will really make an impact on how your back feels and your well-being." He made it sound easy. And like a worthwhile investment. And I think he's coming from a place of knowing that the first 15 minutes are the hardest and once someone's gotten over that hurdle, they're likely to be more active, generally.

 

[Ecdysis]

I also need to focus more on being mindful with the movement. I'm much too prone to just doing it all mechanically, like a "chore" that I "should" get done.

Also, try to view it as "I'm allowing my body to move (which is part of its natural repertoire and needs)" and "Movement is and feels safe now" as opposed to the old thinking of "I must do exercise/ force myself to move" and "Movement is dangerous for me"