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Chronic pain and horrible healthcare

Chronic pain and horrible healthcare

I'm posting this during Insomniac Hours, so I imagine that nobody will see this for a while... but, when folks are awake, I need some support.

I am on my fourth physiotherapist. I am seeing them for chronic pain treatment, after being misdiagnosed and incorrectly treated by previous physiotherapists. Due to a reception stuff-up, my next appointment with my physiotherapist is over 100 days away. I will not have one-on-one physiotherapist support until then.

TW: Self harm, suicide.

Content/trigger warning
The prospect of going so long without physiotherapy support, after being in pain every single day for what feels like forever, is absolutely devastating. I rationally know that I do not want to die, but I'm having thoughts of suicide. It's as though my brain sees no other way to escape my pain, because nobody is helping me. And I rationally know that I do not want to be in more pain, yet my brain is also leaning towards self harm, as though that will somehow make the world care about me, as though I might make someone give a shit. It's sick and frightening and I hate it, but that's where my mind goes.

I'm angry about the failure of care. I'm tired of being in pain. I'm tired of my pain being taken seriously by me and nobody else. I'm tired of practitioners telling me that they will help me, only to hurt me later. I'm tired of people not caring. I'm tired of functioning and managing and continuing when it's this hard. I'm tired and I just want someone to help me.

30 replies

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In response to: Chronic pain and horrible healthcare

Re: Chronic pain and horrible healthcare

Hello @D1ng0 I know how you must feel. Give this audio a try. I first came across it when I had agonising teeth pain due to worn enamel. I did not have any painkillers in the house and I could not sleep because the pain was really bad. It knocked out the pain after several listens and I was finally able to get some sleep. I have also lived with misdiagnosed fibromyalgia and that is chronic allover body pain. Anyway the advice is to drink water while listening to this audio. I use headphones but I think just listening through speakers works according to the creator of these fields. I hope you feel better soon! I can say it worked for me. You can also read the testimonials from comments under the video

https://www.youtube.com/watch?v=4xU0Wrx8vtc

In response to: Chronic pain and horrible healthcare

Re: Chronic pain and horrible healthcare

Hey @D1ng0 I am so sorry to hear about your constant pain and the long wait for your next physio appointment.

Does your physio give you daily exercises to do? I only ask as my physio does that and I find it really helpful to keep doing them. Are you able to speak to your physio by phone?

Take care.

In response to: Re: Chronic pain and horrible healthcare

Re: Chronic pain and horrible healthcare

Thanks @Former-Member I will give it a try.

Thank you @Eve7 for the kind words. The main problem is that I have only just finished the assessment process with this physiotherapist, and we haven't yet explored any actual coping strategies or exercises. This physiotherapist had me disclose really personal stuff and is now saying, "just wait over 100 days for your pain management plan". So, that's why I feel blindsided and abandoned. I have emailed my physio explaining that I feel frightened about the prospect of being unsupported for so long. I haven't gotten a response yet.

In response to: Re: Chronic pain and horrible healthcare

Re: Chronic pain and horrible healthcare

Hi @D1ng0,

I am so sorry to hear that you're in so much pain. I can only imagine how frustrating navigating the system must be for you with chronic pain. When you are looking for relief and support, 100 days is such a long time to wait. It really breaks my heart.

It's so understandable that this is affecting your mental health. How can we best support you through this time?

In response to: Re: Chronic pain and horrible healthcare

Re: Chronic pain and horrible healthcare

Hello @D1ng0 just following up with you and the pain audio. I'm hoping you have found some relief. I had a friend with fibromyalgia and she was on some pretty heavy duty opioids. I was denied access to the healthcare system and had to find other alternatives. Anyway thought I'd check in to see how youre going. You may have squeezed in some much needed sleep today which would be very welcome I notice you haven't left any other posts so hoping your afternoon has been ok for you. Pain is an awful situation to be in. I have lots of compassion for folks suffering with pain based on what I went through. I hope you are feeling much better! 🌻

In response to: Re: Chronic pain and horrible healthcare

Re: Chronic pain and horrible healthcare

Hey @lavenderhaze, thank you for recognising how awful this situation is.

Honestly, folks saying, "that is really horrible," and, "you deserve more support," is helping. It's support I'm not getting elsewhere. I've booked more appointments with my psychologist but this more casual support is helping in the meantime. I'm really glad to have access to this forum.

I don't want to put pressure on forum contributors to offer a cure or a magical fix (though obviously my brain is desperate for that). If people would like to share how they've personally coped with inaccessible healthcare, chronic pain, medical trauma, et cetera, that's hugely appreciated and gives me hope. But otherwise, just kindness helps. So, thank you.

In response to: Re: Chronic pain and horrible healthcare

Re: Chronic pain and horrible healthcare

Sending you a very big pile of hugs my friend @D1ng0 - I'm glad you found us too 😊💜

In response to: Re: Chronic pain and horrible healthcare

Re: Chronic pain and horrible healthcare

Hey @Former-Member, thank you for following up and checking how I'm doing. I really appreciate you thinking of me.

I try not to sleep throughout the day, as I have a white-knuckled grip on my insomnia as it is. Unfortunately, I didn't respond until now because I was busy having a breakdown, if I'm honest. It's been a long time since I've cried this hard. At first I was numb, then I was absolutely devastated and bawling, and now I'm angry. It's been an emotional rollercoaster and I'm very, very tired. So I think sleep will come easier, ironically.

I want to save the audio for a night when I have the emotional space for it. Right now I don't feel very emotionally/psychologically open. Today I had to deal with phone calls to/ my physiotherapist's practice. I'm not sure whether they're hearing how much they've let me down by guaranteeing an appointment earlier than 15 weeks from now, then pulling the rug out from under me. The stuff they're giving me to do in the meantime is not tailored for my recovery at all. I was feeling comfortable with this physio, but now, I feel like I've opened up for nothing. I've disclosed so much painful, personal stuff and bared my soul to this practitioner, only to be told that none of that information will be used for over 100 days. This is the fourth practitioner I've invested my hope in. I'm tired of it.

Thanks for reading all of that. I know it's not very positive. I'm trying my best but I don't have positivity left at the moment. So, I'm thankful for your compassion, and your knowledge as someone with lived experience of persistent pain.

In response to: Re: Chronic pain and horrible healthcare

Re: Chronic pain and horrible healthcare

Thank you @Jynx. I'm grateful for you and this forum. Otherwise I'd be ending today on a horrible note.

In response to: Re: Chronic pain and horrible healthcare

Re: Chronic pain and horrible healthcare

I will check in with you tomorrow @D1ng0. I'm sorry you are struggling and are experiencing so much anguish. Try if you can to get early morning sunrise, it will easily reset your circadian rhythms. If I have a patch of insomnia I go outdoors in my pjs and be there while the sun comes up. Its been an excellent survival strategy for me when sleep has been hard to come by and when I have been desperate. Its what separate doctors have told me to do and yes no matter how bad I felt it was the strategy always worked. So check when sunrise is where you are tomorrow and consider letting nature heal you! Holding you in my heart. Just be kind to you. Be patient and just listen to the wisdom of your body. Its telling you what you need to do

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