Blue skies turn grey…

The sun was shining and the air was fresh as I got myself into the right frame of mind for the group pain management session this morning. The one hour journey gave me plenty of time to prepare myself, to try and rid myself of the low expectations I had and replace them with a bit of hope – after all, these were the guys who were supposed to ‘specialise’ in CRPS – that’s what I was told anyway…

Well, I have to say that it was a complete waste of time and pain. There was 9 of us in total, all with different chronic pain ailments and I reckon all but me were over 45, which only adds to the isolation I feel in living with this illness – I guess I was kind of hoping to meet someone of similar age and health but no luck there… We sat there as they explained the ‘Biology’ of pain, telling me nothing I don’t already know and not once mentioning CRPS…

The outcome was, we could either have one on one physiotherapy sessions or go through their pain management programme, teaching us how to pace ourselves and manage our pain in a better way. I’ve been here before with my last chronic pain team, minus the offer of one and one physiotherapy sessions – I tell you, the pain clinics here are not even worth their name. How the fuck am I supposed to manage this pain when I can barely put one step in front of the other because of the crippling pain and limitations – I’ve gone way beyond managing this, I need someone to find a way to give me a bit of relief and get back a little more mobility, but maybe I’m clinging onto something that will just lead to a fall – maybe I just need to accept my body is caving in on me and there’s absolutely nothing I, or anybody else can do about it… Oh, and if I were to choose the pain management approach, which I did, just to stay in the system of their department the waiting time is 3-4 months, ha ha ha ha, this is absolutely brilliant – what a productive morning that was…

When we left the weather had turned gloomy – the grey clouds hanging over us as we made our way home totally reflected my mood, one in stark contrast to the one felt early morning. I knew the journey would set my muscles on fire and I’m now home with butt cheeks that feel like they’ve been ripped to shreds…

I’m not sure where to go from here. My next appointment with the consultant who referred me isn’t until the end of July but in the meantime I’ll have to do some more research to see if there are any other options…

15 comments

  1. I wonder, how did the other patients in the group react to this session? Were they as disappointed as you?

    I think it’s important to learn about how the brain works when we’re in chronic pain, so these kinds of sessions are probably helpful for some patients. But it’s not like we don’t have access to that information on the internet. Unfortunately, if you don’t participate, it will seem like you’re not trying.

    It seems like the only thing left for pain patients like us may be something experimental, like stem cell treatments. If it works for cancer, why not intractable pain? But the risk with experimental treatments is that they could make everything worse, which is pretty scary. Still, maybe it’s something you can look into?

    Liked by 1 person

    1. We didn’t really get the chance to interact with the other patients there, plus, once it was over I just wanted to get home has I was completely drained – another problem I face with the pain-management programme being 3 hour sessions – that’s far too much for me… Yes I will continue to look into other treatments and see what other places have to offer, I don’t have much to lose in doing this… Thank you…

      Liked by 1 person

  2. I sometimes wonder if these appointments with doctor after doctor are unhelpful, we are always looking for an answer and so we seek out the next doctor and then we find out that they can’t help and we feel crap.
    Maybe we should just surrender and accept that we can’t be helped at this moment in time, however I do believe that in the next ten years they will have worked out how to turn the pain off, through targeting the right gene or some other method.
    On the first of May my pain team said they would get me urgent help for depression, I have heard nothing since and I’m not surprised, they don’t care about us personally, they move on to the next patient and we are forgotten.

    Liked by 2 people

    1. I agree with you entirely… I have had the same feelings of disappointment going from one doctor to the other and find it can make me feel worse getting knocked down time and time again… I hope you’re right and they do find a way to turn this pain off but I’m not convinced – especially with how little money is going into research, but I hope I’m wrong… Your pain team not getting you the help for your depression is shocking but doesn’t surprise me – they are clueless and an absolute joke. Now where to go from here, there has to be somewhere… Thanks a lot for your message and I hope your pain isn’t giving you too much grief at the moment…

      Liked by 2 people

  3. sorry about my first comment. i was trying to use my phone..sigh. i’m so sorry to hear about your disappointing session. i was hopeful too. i’m not qualified to give advice, i’m really just a virtual listening ear, but my god, i would be smoking a ton of weed if i was you. i’m no doctor, but isn’t pot a legit way to manage pain? smoking dope aside, i know that i can’t really offer anything that will actually help or make a difference, but i am rooting for you, i am listening, and i haven’t lost hope for you yet. yours…

    Liked by 3 people

    1. It’s okay, I’ve done the same when messaging on WordPress with my phone… Thank you for your kind words, and what I would give to smoke a ton of weed right now – it would certainly help me forget my troubles that’s for sure – plus I’m pretty sure that their is good evidence out there showing it can actually help pain patients – but that’s not likely to happen here in the UK, not anytime soon anyway… Thank you for listening and for not losing hope, it means a great deal…

      Liked by 2 people

  4. I don’t even know what to say that could make you feel any better about the situation. Keep your chin up? Look on the bright side? Yeah…I get it. And I wish you weren’t going through this. It sucks to go through all you have to, only to arrive at a place with nothing to offer. I sincerely hope things get better for you. Hugs

    Liked by 4 people

    1. Ha ha, thank you for that. Yes it totally sucks, especially when it’s a constant chase to find something or someone to help, only to find a lack of understanding towards what we’re dealing with. It’s so frustrating. Never mind – I’ll keep searching away… Thanks again for that…

      Liked by 3 people

  5. Whereabouts were you offered the chronic pain programme? I recently attended one! I have an interesting blog to write about my experience I keep putting it off but will be on it think you’ll be surprised!

    Liked by 1 person

    1. It’s at James Cook university hospital up in Middlesbrough – I start one on one physiotherapy sessions there at the beginning of July – it’s the second chronic pain team I’ve seen, the first was no good at all… I’ll look forward to reading your blog post about it – my request to follow your blog is currently pending…

      Like

      1. Which blog was it? I write two, one is a closed group set up as a result of our local pain management course as kind of an extended support network the other one is my personal blog think it Seachy suffers or waffles u can never tell

        Liked by 1 person

    1. I clicked on the link below your name called ‘norwichagainstchronicpain’ which I think must be your group name – I’m now following your seachysufferers blog and will be sure to take a read through… Thank you..,

      Like

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