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Coping with chronic pain

Hey guys, I couldn't find a thread for managing chronic pain- sorry if this already exists! There is the chronic illness support squad which is similar though 🙂

 

So I guess this is a thread for sharing experiences relating to pain and offering peer support and coping strategies (when asked for). This isn't a place to advocate for 'cures' or certain treatments, but more just for hearing each other and sharing things that have helped cope with the mental, emotional, physical, etc impacts of chronic pain. This is a safe space so if you do want to share, you can share as much or as little as feels comfortable for you (while keeping the guidelines in mind of course). There's no pressure to go into detail. Everyone is welcome, regardless of if it's you or someone else experiencing pain, or if you just want to know more, and there's no 'gatekeeping' here. If you need help about anything, big or small, diagnosis or not, we're here for you 🙂

 

Try to be mindful of others who might be I guess 'vulnerable' when talking about things- e.g. try not to make promises or pessimistic/optimistic generalising statements about what will happen and what people with certain symptoms can and can't do. Try sticking to talking about your own experiences and how they impact you, while being mindful and respectful of other's experiences too. Also everyone's experience is valid no matter how 'severe' it is. It's normal to compare yourself to others who have it better/worse than you and a whole range of emotions can come up from that, and that's okay. But that doesn't make anyone's experience more or less valid, and we are here to support everyone!

 

If anyone else can think of anymore guidelines we should stick to so that this is a safe thread that would be cool! Or if there's something you want to change about how we approach this thread- that's okay! Cause I feel there's a lot to keep in mind when talking about this stuff!

 

Edit: If you need more individualised support than you feel this thread has to offer, you are of course always welcome to make your own thread about what's been going on for you. If stuff is really hard and some topics might be triggering for others please put a trigger warning if you think it's still appropriate for this part of the forum, otherwise it might be more appropriate to make a thread in the 'heavy feels' or 'something's not right' sections of the forum. As always if you're feeling unsafe or needing more intensive support, please check out these resources as we do care about you and want you to be safe

Lost_Space_Explorer5
Lost_Space_Explorer5Posted 04-05-2021 11:38 PM
 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 07-08-2021 10:12 PM

@Savannah-RO me too, they aren't fun... but unless your ligaments are like mine and made of wet spagetti you'll probably be fine.

 

I should be okay, but it's an inconvenience I'd rather not have.

 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 24-08-2021 03:03 AM

So I've been out of my sling for about a week. My shoulder isn't actually damaged, but my muscles have basically freaked out and have all stiffened up to protect the shoulder. Which means that my shoulder, back and neck are all stiff and sore and I've got a migraine.

 
 
 
 
 
Philippa-RO
Philippa-ROPosted 24-08-2021 02:20 PM

@Tiny_leaf I'm glad your shoulder isn't damaged, but that sounds so painful - I really feel for you. Are you able to take it easy and rest for a while?

 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 25-08-2021 08:10 PM

@Philippa-RO

it's definitely not fun... 0/10

I've been resting so far, but my physio says I should do some exersizes to help strengthen the muscles in the hope that they'll hold my shoulder together like they're meant to...

I was able to do horse riding today, but in the end I had to let go of the reigns and be led around like a four year old on a pony ride. Also the horse farted constantly. It was great.

 
 
 
 
 
November13
November13Posted 31-08-2021 02:24 PM

Hi @Tiny_leaf, I'm sorry to hear about the pain you're in. And the horse riding definitely sounds like an experience! Are you feeling any different today?

 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 05-09-2021 03:51 AM

@Emily-RO@November13

 

It's migrane time!!

The muscles are still stiff from the dislocation which is causing head and neck pain.

 

I'm looking forward to horse riding in a few days though.

 
 
 
 
 
November13
November13Posted 09-09-2021 12:34 PM

@Tiny_leaf Urghh not fun not fun. I hope you recover quickly and get to get back to horse riding soon (Or maybe you have by now?) 🏇

 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 14-09-2021 10:33 PM

Thanks @November13

 

I am back at horse riding and my shoulder's recovered. Yay!

 
 
 
 
 
November13
November13Posted 15-09-2021 02:36 PM

@Tiny_leaf it's great to hear your shoulder is okay now! And yay for horse riding!

 
 
 
 
 
Emily-RO
Emily-ROPosted 27-08-2021 09:57 AM

Hey @Tiny_leaf

Omg the farting horse experience sounds like an adventure! Honestly, I know how you feel about feeling frustrated about recovery. It's takes time and work to heal, and it can be quite emotionally draining. How are you feeling about the ride now?

 
Lost_Space_Explorer5
Lost_Space_Explorer5Posted 30-07-2021 03:50 PM

I'm so frustrated. I got my meds increased to see if it could help and I swear to god it was and I was almost pain free for a few days and I was beginning to think I was 'cured'. And then BAM it comes back 😢

 

 

This video just about sums it up

 
Lost_Space_Explorer5
Lost_Space_Explorer5Posted 15-07-2021 02:20 AM

Does anyone have any advice on getting to sleep with pain flaring up? 😞 And how to not worry about things never getting better? 

 

I feel like I'll never be able to do anything with my life. I know that's not true but it's like there's this huge mental barrier and it's getting me down 😞 

 

I need to look at this in a different way I think to cope better. Does anyone have any tips?

 
 
tanonymous28
tanonymous28Posted 19-08-2021 10:10 PM

Hi @Lost_Space_Explorer5

 

I'm a bit late to the post, but I'm wondering how you are coping? I hope you're doing well!

 

I know the struggles of chronic pain and sometimes the mental barrier can be just as hard as the physical.

 
 
 
Lost_Space_Explorer5
Lost_Space_Explorer5Posted 19-08-2021 10:51 PM

Thanks for your reply @tanonymous28❤️ I'm going okay. I'm still pretty hopeless about things but just trying to stay present. Yeah I know what you mean about the mental barrier 😞

 
 
 
 
tanonymous28
tanonymous28Posted 23-08-2021 08:19 PM

Glad to hear you're okay @Lost_Space_Explorer5 ! In terms of getting past that mental barrier, for me, I absolutely sucked at reminding myself that things will get better. I always felt like the world was against me and that it was unfair, and I'm guessing many out there with chronic pain, especially at a young age, have felt the same.

 

Reminding yourself that it will get better, and also reminding yourself of all the great things you have in life, can provide some comfort. That would probably be my best advice. Also, surrounding yourself with people is what I found to be really beneficial for my wellbeing - or at least talking and socialising with others. I tended to isolate myself and that's when my mind got the better of me, and I really didn't like that. 

 

I know you don't deserve the pain you are going through but it really will get better. Perhaps, try to think about all the things you can do right now that does make you happy, and make an active plan for all the things you will do once you are feeling better? 

 

And also, every time you do end up feeling like progress has been made, allow yourself to really celebrate and be happy over it, because it is a massive accomplishment!

 

This advice is just what I found to be best for me, and I'm sure it's not translatable and universal for everyone out there, because we are all different, but I thought I'd share it because if it does provide some comfort that's awesome.

 

You're a legend, mate. 

 
 
 
 
Emily-RO
Emily-ROPosted 20-08-2021 02:16 PM

I'm glad you're going ok @Lost_Space_Explorer5💙 What you're going through is really hard and you're so strong to try and stay present. I think taking things just a day at a time is a great idea. 

What have you been doing to try and stay present?

 
 
Portia_RO
Portia_ROPosted 15-07-2021 01:25 PM

Hey @Lost_Space_Explorer5 , did you manage to get any sleep last night? 

 

I don't personally experience chronic pain, but as someone with a chronic mental health condition, I can definitely relate to the daunting feeling that things might not get better. It can be really overwhelming trying to come to terms with the fact that you have to deal with something long-term, especially if it's something that is bringing you so much pain.

 

What have you been doing lately to cope with your pain? Has anything worked well? 

 
 
 
Lost_Space_Explorer5
Lost_Space_Explorer5Posted 15-07-2021 05:36 PM

Yeah I got to sleep eventually and then slept a lot today @Portia_RO... Probably that's too much sleep. Thanks for sharing about your condition- yeah it can be really hard to accept that you might have to deal with something for the rest of your life 😞

 

I've been trying to do my physio exercises and take my meds but it's not really helping 😞

 
 
 
 
MB95
MB95Posted 27-07-2021 10:43 PM

Did you work out any hot tips for sleeping lost? Would love to hear them if you did! 

 
 
 
 
 
Lost_Space_Explorer5
Lost_Space_Explorer5Posted 28-07-2021 12:21 AM

Hm maybe try to do stuff that usually helps with the pain @MB95? But if nothing helps try and distract yourself with something nice until you do eventually sleep? Lol that's so unhelpful sorry I think I just waited it out. Maybe mindfulness or breathing?

 

Does anyone else have any tips?

 
 
 
 
 
MB95
MB95Posted 28-07-2021 10:01 PM

Oh man, it must be bad if you're having to phone a friend! 

 

You're meant to have all the answers!!! 😂

 
 
 
 
 
Lost_Space_Explorer5
Lost_Space_Explorer5Posted 30-07-2021 03:46 PM

BAHAHA I don't have all the answers what ever gave you that impression @MB95?!

 
scared01
scared01Posted 08-07-2021 08:39 PM

great thread 🙂 i also suffer from multiple chronic conditions so will be following along here. hope i can share tips and helps others trying to manage too!

 
Tiny_leaf
Tiny_leafPosted 06-07-2021 10:03 PM

AAAHHHHHH MY JOINTS

 

Anyways apologies  for any pain- induced spelling mistakes, I'm gettong a bit dizzy from it.

 

Does anyone have any tips on preparing for a disapointing medical appointments?

I've got a rheumatologist appointment coming up and I want to be hopeful but there's a big chance that he'll be like the other rude and dismissive doctors I've seen...

 

Also any sympathy would be appreciated because today is a bad day for pain...

I've got to tape up some joints but the tape keeps causing rashes and a long term soloution is weeks away...

 
 
Lost_Space_Explorer5
Lost_Space_Explorer5Posted 08-07-2021 10:14 PM

Ahh that sounds so awful @Tiny_leaf😞 I'm sorry you're in so much pain. Is it any better today? I'm not sure if you've had the appointment yet but I mean there's the 'healthy way' you might want to deal with it and then there's what I would actually do- you probably want the first option hey 😆

 

So maybe like having some sort of self-care planned, a way of grounding yourself afterwards and during (you could bring something to fidget with?), remembering that this person you're seeing is human and fallable and what they say doesn't control you, having someone to take you to the appointment and support you afterwards. If you're the kind of person that needs something else to do during the day so your mind isn't still ruminating about what happened, maybe scheduling something else, or otherwise if you're the kind of person who needs to sleep or take a break after an appointment tell yourself that's okay too and let your body rest. Also I guess not getting your hopes up too much for one doctor, and keeping an open mind that things may change, and also remembering that you've gotten through every day before this and you're strong

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