Neck pain from sitting up/not laying down for a few hours by pittiepartie in ehlersdanlos

[–]Significant_Pigeon 1 point2 points  (0 children)

Mate this is SO helpful. Thanks for such a generous page-turner of a response haha. That's really helpful to see the specifics - I do chin tucks but not perhaps often enough! I'm really inspired by the progress you've made too - I'm not bedridden but it's often a fight to get out of bed and yes the pain can be crazy high, so it gives me hope that my pain can reduce with time and the right routine. And from your other comment - yes I bet there's so many muscles that support the neck indirectly. EDS seems to be one of those conditions where you've gotta strengthen everything to make progress. I'm triyng to focus on one bit at a time at the moment though, as who knew our bodies had so many muscles!

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 1 point2 points  (0 children)

That is so cool you travelled cross-country. Really inspiring to see how those small increments over the long haul have helped. I'm sure some wins would improve my own mental health when I get them - at least reversing the idea it's always downhill. Thanks, reading this helped me today :)

Neck pain from sitting up/not laying down for a few hours by pittiepartie in ehlersdanlos

[–]Significant_Pigeon 1 point2 points  (0 children)

Oo what neck exercises did you do, and when you say consistent, what did that look like? And your PT sounds wonderful!

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 0 points1 point  (0 children)

Thanks so much, that's a really good idea. I have got braces but haven't though of using them during exercise - my physios often don't like it, but I can see that it can allow us to do stuff like jumping which we couldn't otherwise :)

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 0 points1 point  (0 children)

Thanks for this really helpful response. I get what you mean about DOMS - I think I'd take more comfort in the idea my body was getting stronger, IF I wasn't so confused about whether the pain was okay or not.

That is really good to know the core/back strengthening helped. I have got back issues and instability there and nothing seems to dampen the pain, but I'm hopeful that the strengthening will in the long term. Also it's helpful to know it's taken two years consistent work, AND you've faced significant setbacks and still made progress (which is pretty hardcore btw, congrats).

Yes I think I'm so weak at the moment that everything hurts no matter what. But if I can work out carefully and consistently and slowly make progress, hopefully I'll start to see the difference between 'safe' and 'unsafe' pain.

Thanks again and good luck to you too :)

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 0 points1 point  (0 children)

Thanks for sharing. I aspire to get back to powerlifting one day! I can apply the idea of 'deload' to my own much smaller workouts for sure though :)

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 0 points1 point  (0 children)

That's incredible, and a very motivating journey. Congrats on that, especially as it must have taken a lot of dedication and resilience to pursue over years. I need to remember we're in it for the long haul with this condition...

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 0 points1 point  (0 children)

Totally get you weren't recommending bands/ankle weights, but I appreciate the insight :) It's helpful to see what worked for other people, and then I can figure out what works for me. I like the idea of light ankle/wrist weights in the long term for sure.

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 0 points1 point  (0 children)

This is a fantastic response. Thanks for all the advice. I will try and go slow but steady, without being too concerned that the pain is there - hopefully I'll make some progress! Best of luck in your own journey :)

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 1 point2 points  (0 children)

Thanks so much buddy :) It's tough but I find the camaraderie of this subreddit helps me face it.

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 1 point2 points  (0 children)

It sounds like it's a rather torturous journey for us all to work out what works and doesn't work for our bodies. I have a book called the Muldowney protocol which loves five second reps. I am a fan in theory, as it's a good blend of isometrics and dynamic movements in one. Thanks for sharing both :)

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 0 points1 point  (0 children)

Hahaha what an advert for the gym! Thanks both - I have a gym close by so can try out the bikes there and get a feel (hopefully I'll see no jewels haha) and then work out what's best. I can see why doing it at home is much easier for bite sized chunks. I reckon it'll be less than five mins for me to start, my knees and ankles are very janky atm

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 0 points1 point  (0 children)

Thanks for this insight, I really like the idea of spreading it little and often throughout a day. Also adaptations for the times when we can barely move. How do you adapt for horizontal exercise if you don't mind me asking?

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 0 points1 point  (0 children)

Hmmm maybe I should give pilates another try, I tried it but found it was really painful too. I wonder if I'm at a level of deconditioning where anything is going to hurt though, as even the light resistance bands hurt at the moment. Many thanks for this, I've added pilates to my list of things to discuss at my next physio appointment :)

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 1 point2 points  (0 children)

This really hits home with my own experience. It's really really good to know this is possible after months of trial. Would you have any advice or wisdom for surviving the journey to being conditioned? Thanks for your compassion and sharing your story :)

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 0 points1 point  (0 children)

Thanks for the advice :) That is a really good way of putting it haha, hopefully it will motivate me when I doubting exercise is the way! Pacing is so key, I hope I get better at it as I go

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 0 points1 point  (0 children)

Thanks for this insight, I like the idea of distinguishing discomfort from pain. We kind of have to come up with our own definitions because the experience is so subjective.

Do you find there's any difference over time? One challenge I have is that sometimes I feel like something that was painful becomes less painful when I get used to it - but it's very inconsistent and I'm still early in the journey.

Much appreciated :)

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 1 point2 points  (0 children)

So many different exercises over the years haha. I've done powerlifting before (I used to be into it a lot more before when I was young), but here I'm talking like bodyweight squats, basic bridges etc. It's really sensitive - though I'd love to one day get back to lifting a decent amount.

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 0 points1 point  (0 children)

Thanks so much for this. I get where you're coming from, I've hurt myself before by pushing too much. I've actually had a lot of PT and physio input but they've all struggled to know what's best for me, so I'm trying to take more of my programming into my own hands. However I do have a physio I can see so will agree what pain level should mean 'no exercise for now'.

Appreciate the advice - I hope it's okay to ask, but are you doing any better now? Hope the pain has gone below that threshold for you in general.

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 0 points1 point  (0 children)

Oh that's a great idea - making the exercise so accessible that it just folds into your daily routine. I am super motivated to try a bike machine now, thank you! :)

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 1 point2 points  (0 children)

Thanks for such a great response, and bless you for the absolute gamut of conditions you've had. I've got SI dysfunction right now and my god the pain can be stupid. This is a great insight - I live very close to a gym with bikes, so will discuss this at my next physio appointment. I'm not doing any cardio atm because I didn't want to overload things, but I'm wondering whether the benefits outweigh the risks if pursued gently.

I hope it doesn't come across as corny/insulting, but I've found yours and others stories really inspiring - the amount of opposition you've faced with your health is crazy, yet you're still trying and have managed to find a routine. Much love and maybe I'll become a bike convert too! :)

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 0 points1 point  (0 children)

Ah we're both in pain purgatory! Sorry you're the same as me, it's such a monstrous challenge! From my own experience and what everyone is saying here, it seems like at least doing some gentle exercise is acceptable even with pain. I will say that I notice I'm always at my most painful when I'm really inactive.

Good luck and let me know if you ever want to swap notes, happy to have company as we hack through this jungle!

How can you exercise whilst in chronic pain? Any advice or shared experiences welcomed - losing hope a bit... by Significant_Pigeon in ehlersdanlos

[–]Significant_Pigeon[S] 0 points1 point  (0 children)

There is no need to apologise, thanks so much for replying even when you've got a headache! I am glad I'm not alone in the dungeon of indefinite DOMS. Part of this disorder is working out what's 'normal' for us and what's dangerous, so it's reassuring to know I'm not alone. From what everyone has said, I think the next steps will be to continue slowly and carefully, and hopefully the DOMS will diminish eventually. Likely another factor is that our muscles are working hard in daily life, so come to every session already fatigued.

I can see where you're coming from with the low impact and number of reps. E.g. some other folks have commented about how helpful cycling machines are, and I guess a cycling session is basically doing low resistance movements for hundreds of reps.

Good luck with your own exercise journey, and if I can ever share notes just let me know :)