Ignorance is bliss they say – not when you’re a product of it…

This pain is immeasurable – indescribable and inconceivable for others to ever understand. I’ve deteriorate so much already this year and I’ve nowhere else to explore – having recently been denied a trial of the Spinal Chord Stimulator because, “with your current level of disability and distress, in my opinion spinal chord stimulation is going to do more harm than good,” I’ve come to a dead end. He said I need to motivate myself more – me, motivate myself, ha ha that’s funny that is – he wouldn’t be saying that if he knew the person I used to be…

I’m not sure I’ll ever be able to accept this life; not because of the pain or disability, the isolation or loss of my able-bodied life, but the fact I have absolutely no understanding of why…? What even is CRPS…? Why doesn’t it get taken more seriously…? Is it just a category everyone with unexplained pain fits under…? Why isn’t there enough help out there…? I’m confused. Having had 2 separate CRPS diagnoses to then recently have a psychologist say they’re weak and she believed what I have is a mental disorder (Somatic Symptom Disorder) I mean, what the fuck is going on here…? That’s like saying I went in for an operation and magically woke up mentally ill – or that I’m hallucinating the discolouration of my operated leg and clawing of my foot – visible symptoms.
It seems a cop-out to palm chronic pain patients off as having a mental disorder to explain their pain – damn right I’m mentally ill – my head is completely screwed up I know that, but that’s not why I’m feeling all this pain – It’s because of everything resulting from the pain – pain pain pain pain pain. My social worker said not too long ago about some people being able to cope with chronic pain better than others – was that her way of saying I’m a wimp…? Is that really how people see me…?

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I worked up to 80 hours a week before my hip operation – in constant pain and it had no effect on my life or mood whatsoever apart from a little frustration every now and again – even for the first couple years after the surgery had made me worse I managed an intense Access to Nursing course at college and worked part time. But this pain is something else on another level entirely – it was like some external force took over my body and the burning that only affected my hip post-op spread through my lower body with each passing step – the difference in pain over the space of a couple of days was massive and my body has never looked back. Over the last few years I’ve gone from walking with a limp to needing an electric wheelchair recliner to get about – and that’s never for pleasure given how much pain I have in my butt cheeks when sitting. There’s not a second that goes by where I’m not in huge amounts of pain – my legs are either on fire or ice cold where my bones feel like they’re being crushed – what is it with that and this sweating is getting out of control…?

I don’t use the word cripple lightly but this pain in my legs has well and truly crippled me – my life is now pretty much spent lying down and I haven’t got here through psychosomatic pain. It just does not fit with how this pain has unfolded…

Many thanks for reading – follow me on Twitter @aChronicPainPoW

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15 comments

  1. You have my sympathy, frustrations and anger bud. I think we get labelled because books tell us (doctors and DWP) we must and it is what they do. Of course mental illness goes with chronic pain if you lived every minute of everyday in agony even to the point of using the toilet is agony it is going to impact us mentally. I wish people could live just 1 week like it and see how quickly their mood changes! Hoping for some relief for you soon.

    Liked by 1 person

    1. If only some could live with it for just a short time so they know how it feels – maybe then they wouldn’t be so ignorant. Mental illness definitely goes hand in hand with chronic pain and I agree that we get labelled ‘because the books tell us’ – it stops it from being unexplained if we are diagnosed with a having a mental disorder – it’s so so wrong what they do for whatever reason… Hope you’re bearing up okay, mate…

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  2. It seems strange hitting the like button but were you writing a satire it couldn’t be more absurd.

    This “motivate yourself” nonsense seems to be foisted on anyone with a chronic illness / condition whether it’s ME as in my case FM, CRPS the list is tragically long.

    As always my thoughts and prayers go out to you but, most of all, I look forward to the day when the psychs do their proper job and other medics realise they’re dealing with a person (not just a list of symptoms beyond their present comprehension).

    It’s surely time that proper research is done into CRPS with a view to discovering medications and techniques to ,at least, alleviate the real pain one experiences and hopefully discover that there’s a cure.

    Sending gentle cyber hugs your way.

    Liked by 1 person

    1. It’s like they can’t be bothered with you – the way they talk and look at you with no empathy whatsoever – just another statistic – an irritant they can’t be bothered with – I could never be like them I couldn’t sleep at night for the guilt… Thanks for messaging and here’s to hoping for a low pain day…

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  3. …I too disliked hitting that Like button. My oh my…what to say when you seem to have hit a wall, no answers, no help, nothing! How brave of you to pour out your heart and soul with us…and all I can say is…Thinking of you…Hang on in there and wishing you SOME respite from that awful pain…. take care my friend.

    Liked by 2 people

      1. Hope you find what you need to make you comfortable my friend. I can totally understand your being fed up with the NHS . We can never ever get to see a GP in our practise…just hopeless! Good luck my friend! 🙂

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  4. You are no wimp, my friend.
    I also sweat constantly. What the fuck?
    There is nothing that can really be done for fibromyalgia, so I understand your frustration. Take care and gentle hugs.

    Liked by 1 person

  5. Hi again, sorry to hear that you’ve deteriorated so much, so quickly. I do hope you don’t continue on that path!
    You are definitely not a wimp; don’t ever think that, but it has to be true that people handle chronic pain in different ways; and yes some may cope better than others. I always say though that we should never compare pain. What my reaction to pain is, is so different to yours. They say that at level 6 on the pain scale you are at equal pain to a woman in childbirth or a normal migraine. This to me sounds crazy, but I had a 10lb 9oz baby with just gas and air. Now I use that to compare my pain and I can categorically say that my pain is daily on a similar scale to that at some point! And weekly I have at least one day where the pain is at that level or higher for the whole day. How can someone how hasn’t given birth use that pain scale? How can someone who has had a different labour, use the same scale to compare their pain. It will be different to mine. Don’t focus on that! It silly. Just focus on ways to help you cope with the pain the best you can. Xxxx
    P.s I’m sorry I’ve nit commented for so long, I too have gone downhill rapidly and been bed bound these last 5 months or so and had brain and skull surgery.

    Liked by 1 person

    1. Don’t be sorry – it sounds like you’re having a torrid time. I’m sorry to hear you’ve gone downhill rapidly also – when did you have the surgery and has it helped any…? I must stop by your blog.

      That’s it you see – it’s not as if I can compare my pain with childbirth and like you say everyone’s pain is different and so are people’s pain scale. Definitely not going to focus on that anymore – I need to look ahead and forget about how the appointment have gone the last few years… Thanks for stopping by…

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  6. i assume you are in UK. Do they give you anything for the pain? By that, I mean opiates? They are clamping down on them here in a big way. They blame the heroin epidemic for the gateway drugs of Vicodin and Oxycodone, Oxycontin. So they want to take those away. What choice does that leave us?
    People, doctors especially don’t realize this: We are willing to suffer, a littie, a lot. But pain is cumulative and builds on itself.

    The experts at the Center for Disease Control in Atlanta, Ga, have determined opiates have no benefit for long term pain. I beg to differ. Without them, I don’t know what life would be like. And I have excruciating lower back pain. New technology to burn nerves via cooled radiofrequency ablation is promising but Medicare doesn’t cover and it’s tens of thousands of dollars. New, pricey technology.

    Liked by 1 person

    1. Yes I’m in the UK – I came off the opiates not so long ago – my pain doc wouldn’t up the dose any further so they no longer worked. I haven’t managed to come off the pregablin yet but I intend on doing so eventually – after that there’s nothing else they can do. Can you not try a Spinal Chord Stimulator for your back pain…?

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  7. What do they mean by “more harm than good”?
    Are they saying it will cause more pain?
    Or are they saying it will help the pain but it will possibly cause more deterioration or damage to the spinal chord?

    If they are trying to preserve something about the physical condition by refusing something that will reduce the pain…..then you should be allowed to argue for doing that….and sign whatever “hold harmless about causing damage” paperwork to authorize the procedure.

    To me the pain is the priority over anything else. What do they think they are trying to “preserve”?
    There is a point at which you should be allowed to make those kinds of choices. Because preserving a little bit of function….when the quality of life is already at the worst possible level….to just let you suffer in pain….to maintain “quality of life” ….because the Pain is the main thing interfering with your quality of life right now.

    Liked by 1 person

    1. Yeah they’re saying it will possibly cause more pain – I’d happily sign a consent form that showing I’m aware of the dangers etc and I told him that but he refused – the more research I’ve done I think it’s more to do with my pain being so wide-spread – plus our NHS is in a right sodden mess so money probably has something to do with it as well. They really seem to believe this isn’t as bad as what I’m telling them – the ‘pain’ clinics here really aren’t worth their name… Really not sure where to go from here – there doesn’t seem to be much left to explore – what I’d give to try Ketamine infusions though – they’ve helped so many people I’ve come across online and when I mentioned getting them to my pain doctor he refused also – there’s no evidence of of it benefiting apparantly – money money money… It’s so frustrating being stuck in limbo when there is other stuff to try out there… Thank you for for your message…x

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