Recently I went to my pain clinic, and with my usual failing to read situation, got myself discharged, as what I meant was , (I thought he was uncomfortable) one thing ,but he thought I meant something else, and it was not until I talked to my GP that I realised, what happened. Because I'm not fine, but on the day I'd seen him I just wanted to get out of there, so may have given wrong signals.
Anyone living with pain knows that minute to minute and hour to hour there is an up and down level of the pain , and the managing of it fluctuates and I'm now worried that as my pain is fluctuating so much now that I should be given something else to try, as Tapendaton is not doing what It once did and the just doubling up is having an impact on my liver and Kidneys . as the pains at the back of my neck and face are becoming so unbearable and at least two nights kept me up, and like I've done for as long as I can remember, I could not get out a true picture and into my mouth to explain properly.
I'm not blaming the consultant, as he is not to know how my neurotic working brain processes info.
But I know it is the human condition, this failure to communicate (in so many ways) is not just about information, there are wrapped up within the talking process, a whole lot of other thing's going on, and that's how in criminal trials, the scientific evidence becomes paramount, because that is less likely to be contaminated by the human condition of the selective memory, that is so much relied on ,and abused so much by those in a position to slant the information, to only give their point credence over someone who may not have access too, or the learning, to get at the truth, especially when dealing with overly powerful institutions, who will go to great lengths to hide , or to collude to avoid the obvious.
Not wanting to be too mysterious, I would love to hear from others of how maybe their failure to communicate has affected their consultations.
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coolpolitealex
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David never leaves home without me. I go with him even to GP.
Ay a recent first appointment with psychiatrist I was asked to attend with him. Doctor spent hald an hour with David then asled me in alone. He said he is well aware of how many CP patients answer...I'm fine...and spuse or someone close will always have a different version.
On this occasion bot David's and mine were the same. Not because he doesn't tell the truth but so many years of CP it becomes a way of life.
We are lucky. We have an excellent relationship with the pain cllinic and it is usually me who rings or emails on David's behalf. They know if I say he needs help - he needs help. Being part of that close knit family goes with the lifelong membership.
How about writing things down? You know ..it maybe a week or so before you are due to go and something which happens often but not regularly. I guess the old diary thing but bot so intense.
Meantime if you have been discharged - get recharged.
It happens Alex, don't beat yourself up. Ask GP to re-refer, there is usually a semi-open door policy to Pain Clinic for CP sufferers. And do as Pat suggests, write stuff down, Maybe keep a mini pain dairy got a week before you go.
Ah yes that's what I mean to do, but somehow I get side-tracked mentally, and it's very difficult for some of us that seem to live in the moment, but great advice, Calceolaria' and I have got a good GP and she is, I think' going to get it sorted, so I will keep that diary as an extra reminder, thanks best Alex
I find that pain makes it hard to follow a conversation it distracts you usually at some very important point .
My remedy was to write a letter to my consultant explaining this and making the points I want to make then take it with me and ask him to read it before we start anything.
It is so much easier to write these things down in your own home at your own pace you can even read back to see what youve already said.
Give it a try it works for me and it cant hurt .lol
That's a great idea, thanks and will do, best Alex
Maybe keep a pain diary on a day to day basis, Alex, if you have not already done so. There are apps that are free and can do this for you. Then you can just print it off and show the Doctor what you mean. I did it for my GP and she quickly found the triggers for my pain and told me to stop doing certain things that were making the pain
Sounds like the pain clinic is not up to much. Pain clinics are very variable as to how good they are.
Part of a good pain clinic's course should be to teach people the problems of communication when suffering from chronic pain. What is more important is that the pain clinic should help you develop appropriate strategies for handling the communication deficits caused by chronic pain.
It is worth researching to find out if there are better pain clinics.
I struggled a lot to explain what my pain was like in the early days. My idea of pain was that it was like toothache, or as bad as the labour pains I'd had. I didn't realise that all the itchy, burning, crushing, stabbing sensations I was getting every day was a form of pain too. It was only after I'd been to a lecture at work that I realised this was what I had, and it was several years after the pain started.
I also found that I could be absolutely fine at appointments, and then the pain would start on the way home - probably as a result of being poked about. It's harder to describe something when you're not experiencing it.
It got much easier to describe my pain once I started to keep a diary with descriptive notes of what the pain felt like, how it made me feel, and what it stopped me from doing. I'd then take notes from the diary to appointments.
The other thing to do is to plan what you want to say before you go. Think about what you want from the appointment. And don't be afraid to describe things how they really are - telling my consultant the pain was bad enough to make me want to take my head off was far easier than trying to rate it out of 10.
It's a long journey and sometimes you have to go back and retrace your steps. Good luck.
Am just thinking aloud here.....may be keeping a journal for medical purposes could help. I would write how i feel during my painful and not so painful moments etc and whatever i do to relieve the pain and whether it helps of not etc, including any questions that come in your mind that you would wish to ask the dr at that point in time etc. Your journal could speak for you when you can't...
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Where to go from here?
Need to have a moan sorry guys 
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