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TV reporting setting back CP progress

5 years 2 months ago #12438 by di
di replied the topic: Re: TV reporting setting back CP progress
I couldn't get anywhere on the TT site. The only email option takes give you a link to send the story to yourself or someone else.
The only other option was the 'contact us' but I didn't really want anyone contacting me per se, I wanted to write my opinion.

:) Di

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5 years 2 months ago #12439 by Peter
Peter replied the topic: Re: TV reporting setting back CP progress
Fee, I can tell you what it was like 20 years ago. Actually, I can tell you what it was like 30, 40 and even 50 years ago, which is when I was a kid and my CP first started.

It was called 'growing pains' when you were young. As you got into your teens, 90% of us were playing sport, so it was put down to skeletal growth happening too quickly for the muscles and tendons, so it caused tearing and pain. Then as you get into your adult years, it became a psych condition. They invented the words 'phantom pain' way back in the 70s. It seems as though they thought that the pain amputees felt, was the same pain other people felt who had no apparent injury, so the said it was similar.
They actually didn't realise that they were very close to the mark and almost on the money with that. But in reality, they were only trying to say that by phantom, they mean in your head and you should just go home and forget about it.

Yeah right, go home, take 2 Bex powders and have a lie down with a cool face cloth over your forehead.

As it turned out, when the doctors and specialists who actually did give a toss, started properly investigating, they found that real phantom pain in amputees and CP, were caused by the same part of our brain.

Anyway, very little happened for anyone suffering CP, until some years past 2000. They doled out a lot of anti-depressants to people who suffered CP, trying to fix their heads. They sent a lot of people away and told them that there is nothing that can be done. I was one of them. I am also certain many committed suicide too.

I hate the fact I have been treated like a Leper for most of my life, just because health professionals took too long to decide whether or not to study pain that is unrelated to obvious injury. It's been a long hard journey.

The problem is, no amount of pacing or any other wonderful self-management tricks are going to help me very much. It is way to late for people like me who have been ill for decades. I have done most of the work myself, but lacked the understanding and the extra skill to take me that little step further. The pain clinics have been a real boon in helping me get all that I needed. In the end, all that I can hope for, is a bit better life than I have had to put up with. But for people who have been on the CP roundabout for only a short time, they should get huge benefits from pain clinics, if they go in with the right attitude and outlook.

It's not a bad news story for anyone. It hasn't been for me. My problem is that too much water has gone under the bridge, but hey, I still got a lot of benefit from them and will always promote them, because they are the way to go.

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)

So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)

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5 years 2 months ago #12440 by di
di replied the topic: Re: TV reporting setting back CP progress
Now why can't the Today Tonight reporters come in here and spend a week finding out what real life is like for Chronic Pain sufferers and give this disease an honest airing and perspective?

Let them walk a week in your shoes Peter. We need a machine that mimics Chronic Pain like in the 'Flat Liners' movie that a reporter or treating specialist/doctor slips on to see how you're feeling. :silly:

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5 years 2 months ago #12441 by kebsa
kebsa replied the topic: Re: TV reporting setting back CP progress
that would be a good start Di but i know for me at least part of the issue is the ongoing nature of the pain, i have had many orthopedic operations over the yrs, i have also had my leg amputated and deal with intermittemt phantom pain- my phantom pain is caused by a neuroma that has formed and every now and then it gets knocked, causing quite intense pain for perhaps 2 hours- at its worst the dog seems to be able to sense it and actually hides- the thing is that even though it is about an 8 or 9 out of 10 on the old pain scale i can cope with it because it is relatively short lived- other pain that is lower on the pain scale is harder to deal with because it just persists, goes on for ever (or seems to) i gues what i am saying is that even if the reporters could feel some of what we do for a week thy would not really understand how the ongoing nature of the pain just wears a person down

to me its like water, a few drops of water are basically insignificant, you will not drown, and it will not be enough to quench you thirst, but if you persist with small amounts of water over a long period of time it will wear away rocks. I' not saying that chrnic pain is not severe, just that it does not have o be severe in the smae way as acute pain to have a devastating impact on a persons life- that is something that is tougher to get through to others, i think most of us have had loved ones or friends who have downplayed the effects it has on us at times- just like the effects of that water, it erodes a person bit by bit- its easy to see that persistence with water, just look at the grand canyon, its harder for people to et the effects of chronic pain

i know that part of my MS is a problem with fatigue and i have similar problems with that, if you tel most people that you are suffering with severe fatig, they are likely to sy that they have been tired lately too, or similar comments- but the fatigue that goes with many diseases including Ms is far worse- firstly it just does not stop and secondly, at its worst, it tough to even sit up- there is no way you can just "pull yourself together and tough it out" chronic illness can be very destructive and i really tink it takes a good deal longer than a week to understand- a week is just a dose of the flu- not a life time of potentially debilitating problems- not sure how we can get people to really understand without them joining the club

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5 years 2 months ago - 5 years 2 months ago #12443 by di
di replied the topic: Re: TV reporting setting back CP progress
Your logic and clarity is again inspiring kebsa, thank you. You're absolutely right, the hell of CP is the sheer nature of it's ongoing, never ending let up. That constant. One week only would be more... uncomfortable than CP.
Your analogy was great. :)
Last Edit: 5 years 2 months ago by di.

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5 years 2 months ago #12446 by BIY
BIY replied the topic: Re: TV reporting setting back CP progress
Thanks Peter and Kebsa for your input.

You both have really good ways of putting things.

My injury occurred in mid 2000 and there was not one doctor that I came across at that time that even mentioned the concept of CP. Just that they couldn't find anything pathologically that was causing the amount of pain I was in. It didn't help that they were taking xrays etc of the wrong area either so that complicated it further because my oral specialist said that if the TMJ had been diagnosed and had early intervention treatment (instead of it taking 4 years), the condition probably would not have become chronic. My broken arm that happened at exactly the same time was diagnosed, treated and healed up no problems.

But apart from my oral specialist saying that on his report, no other doc has admitted that there was diagnostic negligence in the first place. What I'm getting at is that the poor old patient is continually the one that has to wear these mistakes; not the medical profession and, if you dare pipe up and say anything, it doesn't seem like you're listened to because hey, guess what, it says on your medical records that this patient has psychiatric issues because some docs (for lack of knowing how to explain what they don't know) have slapped that label on you.

Gosh, I tell you what, it's really wearing thin! And it's such a difficult extra burden to carry on top of having CP. CP robs your confidence in your own body and your own ability to perform physical tasks, this psychiatric label robs you of your confidence in your own's a two edged sword!

It gets doubly exhausting from that perspective because you feel like you have to 'prove' yourself each time you see a new doc or if you regularly have to see the same doc who has that 'it's a psychiatric condition' bent, then you have to 'prove' yourself at each visit. Because those docs understanding CP are so few and far between, it is not so easy just to change to another one.

Not happy Jan; the psychiatric label bit is wearing me down.
Fee :(

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