Has anyone come across or experience of ....Pain Dementia

[Bananas5]

I don't mean dementia associated with the effects of log term use of strong pain killers. (Opiates etc)

Pain dementia is caused by the brain trying to cope with Chronic Pain.

If anyone has come across this I would be grateful for info.

Pat x

[Hidden]

Hello Pat

Several days ago I dealt with this and will give a repy to those who asked.later

When in pain it seems to effect the persons activities as the pain expression and other things seem to cause the brain to overload, patients gag and become unable to think on their feet, they gag, and a further circle seems too form where short term memory is effected also day duties go by the board as a Reactive Depression kicks in this further leads to a deeper depressive state, the pain patient will begin to gag as the brain produces certain chemicals to control pain and other problems that the patient is Going through, this happened to me and I had to have, a scan several years ago and talking treatment that has just stopped several months ago I still need to take anti Depressants to try and control this

very nasty problem. Eventually the condition can make the person feel that they have dementia as a short circuit seems to occur

My doctor and phycs to give support put me through all the dementia tests, think it was something like 6/7 of them to give support as I had been dealing with two relatives who had dementia, both died of it.

Now I still have problems with this, when I was in hospital I closed off in front of the consultant and He had to tap my leg to get a response as my head had flopped forward over my knees, This can still happen even now and my wife gets very worried when it happens.

Even now when I am talking I am unable to think and I gag, this is very frightening even when i know what is causing it.this makes the patient worry even more and you become so that you will not talk to anyone as it can effect those with this condition, the gagging is very pronounced., you even cannot answer the telephone

I am unable to say how many pain patients suffer this problem, although it seems to be extensive as my GP seemed to know of this as He said the brain seems to work overtime if there is to much on including pain is concerned.

Today it is still happening with me hence the medication, although we all can understand why it happens when we think what is happening to the brain with the medications that we take, for pain control. As I have been taking them for thirty years now. I am now in the position that the doctor has to be very careful when prescribing and in fact He says my dose rate would become too high

All the best

BOB

[Hidden in reply to Hidden]

Hi Bob, what you say rings so many bells,but the one that get's me is the one that when you are in front of the doctor you turn into a gibbering idiot, myself I have this and the other day having been taken by ambulance to hospital a few days before, so that I wanted so much to try and express to my GP ,who's a really nice doctor, but again I seemed more concerned that she believed me, so much so that I kept wandering off into areas, areas that I was worried that I was not being believed and again this gibbering idiot appeared and took over the logical part of my senses, I have had a head injury and maybe it plays a part, but I'm wondering about this relaxation on one part, and the other side becomes overactive, due to the stress of living with constant pain, it's a theory of mine, possibly silly but I can't understand why this idiot appears everytime I have to deal with doctors, any comments please

[Hidden in reply to Hidden]

Hello Alexander

Now when I visit the hospital I always wonder if I have said enough, need not worry they picked most up, so I have stopped worrying.

Now I get the consultants letter that the doctor gets, so I can see the score

Alll the best

BOB

[teadrinker]

Hi Pat

There is an interesting book by Melanie Thurmstorm called "The Pain Chronicles". She doesn't mention pain dementia but she does talk about the grey matter in the brains of chronic pain sufferers shrinking. I don't know how common this is, or if the evidence she has is valid, and have decided not to worry about it!

It's perhaps something to talk to a GP or pain specialist about.

"The Pain Chronicles", by the way, is a good book, lots in it about what it's like to have chronic pain and plenty to identify with. I borrowed it from the library, keep meaning to buy it from Amazon.

[Bananas5]

Many thanks to you all for answering. Much appreciated.

David's short term memory loss and confusion is so painful for him. Not in the same way as physical pain but equally debilitating. I shouted at him yesterday with frustration and that hurt me more than him.

He does have an appt to see the psychiatrist - 6 waiting in front of him so goodness knows when.

I have heard of this sort of dementia and want to be armed with all the facts before we eventually get the appt. So many times if anything is wrong it is the drugs that are blamed.

'Well what do you expect' is not the most helpful answer.

So we sailor on keeping positive and ready to meet this challenge together.

Pat x

[Hidden]

That type of dementia is not exclusive to chronic pain suffers, people with dyslexia, strokes, excessive stress, young children and hectic lives, any other long term illness suffer from it. And it is also part of the ageing process.

How many times do you hear "excuse me, I'm having a blond moment". We do forget things, get distracted off task easily, and rather than fight it, accept it and put strategies into place to minimise upheaval and further stress. Always loosing your shoes? (I used to) put them in the same place when you take them off. Then you know where they are.

A little bit of organisation goes a long way. Lists and diaries are helpful and once you get into the habit of checking and adding to them each day, its not such a task.

Building a routine sometimes helps too, on Mondays we do this and on Tuesdays we do that.

I'm not sure anything can be done medically to improve memory loss, I think its more about how the strategies can help make life easier. Recognising that you are getting frustrated by it may mean you might want to learn some coping techniques.

[Bananas5]

When you're brain has to deal with chronic pain day in day out, relentlessly for almost 30 years, I don't think it is quite the same as 'blonde moments' or forgetting where you have left your shoes.

This is not occasionally forgetting where you put something - this is forgeting whoo you are speaking with, not remembering words 2 seconds after they are spoken and often behaving as if you are a zonbie with no functions. It is frightening for that person and equally frightening for the carer and those who know him well.

Like any disability it is as important for those closely involved to know how to handle the situation in a safe and caring manner.

Will he get worse as the pain increases? Still a relatively young man he has all the bits wearing out to look forward to as he gets older.

[Hidden in reply to Bananas5]

Pain, build up of drug damage over that period of time on not just the brain, the kidneys and liver which filter and clean the blood that feeds the brain... this all adds up. You try to take an active part in what is going on around you and affects your life in serious ways, write about something say, then read it back couple of days later and you see how you have rambled and muttered your way through some thing, and it is going to be in the local paper, on the web !! I know, have done it - so you explain to someone, well I am on strong meds...... they look at you kinda sideways. It hurts.

Pat, I feel for both of you it must be very difficult, at the hardest and worst times, a cuddle / hug will go a long way, and you will be sharing it, showing care and understanding even when you are frustrated and it is in fact the last thing you feel like doing - it is worth it though I promise you that - Have been on both sides. Just sorry it is all I can offer.

Cee

[Bananas5 in reply to Hidden]

Thank you.

That's what i thought about the drugs but apparently these days they have ways of dividing opiates effects from pain.

It is so easy to blame one thing when it can be another. If David gets a splinter in his finger - Ah well it's your 'condition' - what do you expect?

I must ask at the X party group and see what they know. See if there has been any research done.

I like a challenge!

Pat x

[Hidden in reply to Bananas5]

Hello Pat, it is easy to put blame in a convenient box - convenient to them that is, it's just another way of being fobbed off and shuffled out. Opiate drugs do affect you physically and psychologically, add to that frustration and the slow wearing down of self worth and as age becomes a factor, there is not a lot of the original person still there, just shadows, age not judged by an average of the average healthy person, but age related to how many years of having the illness and how that in it's self has aged you. Good on you for still having a strong spirit and liking a challenge, I do hope you get a positive result regarding the research. All I ever got fobbed off with is, well your body is that of a person twenty years older than you, and the 'what do you expect' get out . My mind isn't - correction, wasn't when I was told that - my mind is fast catching up with my body, which has been doing a lot of hard teaching of late, and my mind is catching on and actually hearing what my body is saying. Jury is out on that one !

Apology for ramble, long may your wonderful spirit stay strong.

Regards to both,

Cee x

[Hidden]

When you consider the problems that chronic pain patients have , also those with long term problems, we begin to understand that there is no two weeks holiday, or in some ways to just take time out that we all cannot take. Adding to that the problems we have in society now, the brain must go through a real battering. That can be amplified by society that have a negative feeling to those who have a chronic disability, this happened to me on many occasions now and we just have to accept it, I suppose it can be real character building although when push comes to shove the able bodied need to know what happens if we crack through harassment.

Society really needs to understand that those with long term problems need to be more understanding and ask themselves what if. We all need a little more understanding that we can live a normal life

All the best

BOB

[johnsmith]

Pain Dementia what a nice word. I have got used to the forgetting that goes with handling my pain condition. I have an appointment at 5pm. I know about the appointment at 3pm. At 4pm I had to do some task or other. The result I forgot about the appointment at 5pm.

I have learnt to have sessions of doing nothing so that I can remember the things I need to remember.

If I do not put something in my diary I can guarentee that I will forget about it. I have to work at having occassions of doing nothing so that I can remember hopefully the things that i need to remember.

My front door is on a mortise lock. I have on a number of occassions forgotton to lock it or have forgotten that i have checked that i have lock it.

[Lunafair]

I have definetly recognised that when going through difficult times, weather due to emotional or physical pain that is chronic - my brain tends to go into a kind of self-defence shut-down mode and will try and hold on to as little information as possible, both with short and long term memory. I feel its my brains coping mechanism that when it feels it is going into overdrive my memory stalls.

Don't know if this is similar to what people are talking about... I find it can often intertwine with disassociating, another safety escape mechanism I think my brain uses.

[Shemadee]

I can really appreciate this thread. I am normally articulate but can remember totally freezing during one appointment with a consultant. Luckily I had written down notes and she was able to complete her form filling using these. I felt like a complete idiot and also felt awful because of the lack of control. Yesterday I was trying to get items needed to go with a form - birth cert, marriage cert, proof of identity, photo plus the actual form. I no sooner found one piece of paper than I "lost" another, this happened time after time and was very frustrating. Felt completely wrung out at the end of it all but I got there in the end.

[sillyoldwizard]

I take Pregabalin , wear Fentanyl patches , have Atypical facial pain and constant headaches , and am 68 .... it's hard to work out which contributes most to my memory lapses !!! sillyoldwizard

[sillyoldwizard]

Try a search online for " Effects of Chronic Head Pain" ... interesting , if worrying .

[Bananas5]

What a massive response and thank you one and all. Pity real names aren't used. You should hear what my screen reader calls everyone - sounds like a list of Japanese volcanoes!!

It has proved a very interesting topic and i intend to do more research. The common theory is that the dementia is caused by long term use of strong drugs especially opiates.

I am sure this may contribute in some way but not all. It has been possible to show on a brain scan which parts of the brain are affected by those drugs. It is also possible to see the parts affected by dementia and they aren't the same.

It is so easy for Consultants to tell you - what do you expect and blame drugs.

I have lived with David long enough to spot changes in his behaviour - no matte how small and know when something is not the norm.

And yes a cuddle is sometimes all he needs. Sadly these days it isn't enough and he is going through a really really bad patch.

But hope srpings eternal.

Pat x

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