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Explaining pain

TheCatWoman

I've got a form to fill in from the pain clinic and it asks me to grade my pain from 1-10 with 10 be the worst pain I can imagine. Can I imagine anything more painful thatn childbirth or waking up from surgery, with my middle sewn up and no pain killers, well no I can't, but theres no where on the form to put this. The form's a bit crap as it has very little space for me to write anything, like the massive side effects from all pain killers except paracetamol and even they upset my tummy after 3 or 4 days.

It dosen't help that I've been discharged by them twice before with no relief, they decided the pain in my back was to widespread for them to give me injections and although I'm going for knee, shoulder and hip pain this time I'm afraid they won't be able to help again and I will be told I'm so resourseful I could teach them stuff. I got upset and angry when they said this, I've done everything I can for 30 odd years to stay out of a wheelchair and now when I ask for help, theres nothing they can do, or will do or consider.

Parents

  • Hi  

    In respect of that pain scale they gave you  It is often categorised into: no pain = 0, mild pain = 1-3, moderate pain = 4-6, severe pain = 7-10, but these categories do not necessarily reflect patient meanings, and are poor for any assessment of change. (source: British Pain Society).

    So anything that is 7 or above is saying to them you're in severe pain for example.  So maybe don't get too hooked up on comparatives - be as honest as one can be with such a strange question and go from there maybe?

    Likewise saying one is experiencing leg pain of 10/10 whilst skipping in and smiling happily would also tell them something - or inspire them to ask whether they could have any of whatever it is you're taking...

    Anyway, pain is also experienced in many different dimensions and as you highlight what helps one doesn't help or indeed suit all.

    Pain and its experience has a significant emotional component too and  a little bit of understanding goes a long way however in a system that is based on filling in forms and protocols perhaps this gets lost sometimes.

    I live with chronic pain myself from a youth where exuberance and fool-hardiness lead to a few broken bones and the arthritis they told me I'd get back then certainly came true!

    The same resource of the British Pain Society says: "Chronic pain has multiple effects on patients, so outcome measures cover several domains: Pain Quantity, Pain Interference, Physical Functioning, Emotional Functioning, Quality of Life, Patient reported global ratings"

    I wonder whether with a bit of imagination some help in one of those domains might be found and I wonder whether priming you for thinking in those terms might help you get the best out of your encounters with the pain clinic?

  • in reply to Phased

    Last time I went it was so rushed, I had about 30 seconds with the consultant who just came in prodded my back and left saying the area of damage thats causing pain is to big for me to have injections.

    I've had loads of problems getting people to accept that I really can't take most painkillers, they see on't instead of can't, or at least extrememly unwilling to take something that at best will make the world inside and outside of my head look like a detuned telly, or give me manic hallucinations. Not only that but it dosen't kill the pain, so I have pain and halucinations which is not a good combination.

    Another thing they asked was what goals I've have, I just pit that I'm autistic and don't have any, or should I put being able to get out of the bath as a goal?

  • in reply to TheCatWoman
    TheCatWoman said:
    I've had loads of problems getting people to accept that I really can't take most painkillers

    How about keeping a journal just about the medications you use, that are tried and that have failed - you should be able to look up the drug groups involved and present the summary list of ones that are good, bad and have side effects whenever you see a doc.

    This should do all the working out for them and they just need to find a drug in the category that you are tolerant to and is effective.

    If you experience push back from them then get your GP to put it in writing for you instead - that will make them be more serious before considering refusing "medical advice".

Reply
  • in reply to TheCatWoman
    TheCatWoman said:
    I've had loads of problems getting people to accept that I really can't take most painkillers

    How about keeping a journal just about the medications you use, that are tried and that have failed - you should be able to look up the drug groups involved and present the summary list of ones that are good, bad and have side effects whenever you see a doc.

    This should do all the working out for them and they just need to find a drug in the category that you are tolerant to and is effective.

    If you experience push back from them then get your GP to put it in writing for you instead - that will make them be more serious before considering refusing "medical advice".

Children
  • in reply to Iain

    I'm quite capable of standing up for myself with doctors and I'm lucky that my GP's are really good, so good that when I next move house I will want to stay in thier catchment area, I certainly wouldn't go to the ones down the road who I don't think could diagnose a rainy day.

    I'm lucky being old enough not to have anything menstral now, but I remember when I did and it was such a struggle to be taken seriously. I still don't understand why women are sent to gynaecologists, who are essentailly surgeons, when so many problems are hormonal, it seems to me that an endrincrinologist would be more appropriate? I remember seeing a study done years ago where details were anonomised and the symptoms given to doctors to see hwat they'd advice? Nearly all of them recognised IBS, but the patients were all women, who'd all been refered to gynae depts, some having surgeries which were totally unnessercary. I hope that the days are past when any woman complaining of abdominal pain and problems aren't dismissed by being told to go and have a baby, but I'm not holding my breath. 

    When I went to the pain clinic before they said I was already doing all the stuff they recommend like exercising daily, using the endorphin wave from a brisk walk to get me through the rest of what I needed to do that day. What was worse, was that they seemed amazed that I knew about this stuff and that his was new ground to them when I'd read it in a womens magazine 30 years previously!