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4 day course on re-educating the brain that pain isn't real - it's just a word.

YadnadYadnad Posts: 2,856 Member
edited May 2018 in PIP, DLA and AA
Seems that the NHS is following in the footsteps of the DWP in looking at pain.
I have been told to attend a 4 day seminar arranged by the Pain Clinic. 
It seems that the pain I am feeling is not pain really but is a particular feeling that my body has not learnt how to ignore it!
Forget the medication, all that is required is to forget the pain exists.
By carrying out various activities and learning to understand how the brain thinks there is pain is a sure way of the brain being able to not recognise it.
Seems that mindfulness meditation for 3 minutes, stress management, eating and drinking the right foods and drink and sleep management will re-educate the brain.

I'm waiting for the DWP when claiming DLA, PIP or AA to surmise that there is no such thing as pain!.

Has anybody else been through this type of re-wiring of the brain?

Replies

  • MisscleoMisscleo Member Posts: 646 Pioneering
    I think you should take tazer with you. Put it up their jaxy and tell them : the pain isnt there. Your imagining it.
    I think wed all like to see that so maybe take your phone and put the results on youtube/facebook
  • YadnadYadnad Posts: 2,856 Member
    Misscleo said:
    I think you should take tazer with you. Put it up their jaxy and tell them : the pain isnt there. Your imagining it.
    I think wed all like to see that so maybe take your phone and put the results on youtube/facebook
    I might well do that (not the tazer bit although it would amuse me to see the results if it was an ATOS assessor!). The Richardson gang in the 60's & 70's in London had a similar way of dealing with people that they didn't like - they used two wires, connected them to a power socket and attached the other ends to their not friends crown jewels! I'm only going out of interest. Personally I don't believe in all this mumbo jumbo - my brain feels pain and that's it - it's real!

    I would add that I have to find my way there and back at my cost - they haven't even given me any directions of how to get there. What I do know is that it will be a minimum of 3 buses!
  • MisscleoMisscleo Member Posts: 646 Pioneering
    You can google directions by going to bus and train thats local to you.
    Also many bus companys realise the cost and will sell you a day ticket.
    Its useful cos if you get on wrong bus you can get off and try again.
    Also other passengers will help put you on right bus and tell you where to get off.
    Give yourself alot more time than you 1st think. Then you will arrive calm
  • debsidoodebsidoo Member Posts: 327 Pioneering
    Hi Yadnad
    Have you tried calling the hospital to see if you can book hospital transport.
    I know it is available to some people in our area so you could give it a go.
        Debsidoo.x
  • GoldmanglerGoldmangler Member Posts: 2 Listener
    I went on one of these pain management courses some time ago. "Mindfulness," they said. "Do a bit more each day," they said. "Reduce your pain medications," they said. I was worse at the end of the course! Still they insisted that it must have done some good on 'another level' which I was just not noticing. Oh yes, and had I thought of taking up the ukelele? - What!!?
  • YadnadYadnad Posts: 2,856 Member
    I can relate to those comments in many ways.
    Mindfulness and whale music is something that I had to endure in the Mental Health Day Centre for many months - in truth, years. I used to fall asleep!
    Reducing the medication is told to me on a regular basis by the pain clinic. On one occasion I was told that I am only taking it because I believed that I was in pain! It was also the only thought of being in pain that I took the medication.

    Well this is going to be fun! Looks like another few hours of sleep, bored out of my skull is awaiting me as well as being told that pain is nothing more than a belief and that can be overcome.


  • YadnadYadnad Posts: 2,856 Member
    edited May 2018
    debsidoo said:
    Hi Yadnad
    Have you tried calling the hospital to see if you can book hospital transport.
    I know it is available to some people in our area so you could give it a go.
        Debsidoo.x

    It's not in the hospital, it's in a village hall way out in the country, many miles from where I live.
    Presumably if I stay after the course I will be invited to join the local line dancing class for the over 65's!

  • YadnadYadnad Posts: 2,856 Member
    edited May 2018
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    Hi had the pleasure of attending a pain clinic coursed.it was sooo patronising .lots of Leung in the movement and eating sultanas slowly too relieve pain .i last 2 session that were 2 hours of painfully sitting and be told we should all stop giving intoo our pain .if only 
  • YadnadYadnad Posts: 2,856 Member
    Hi had the pleasure of attending a pain clinic coursed.it was sooo patronising .lots of Leung in the movement and eating sultanas slowly too relieve pain .i last 2 session that were 2 hours of painfully sitting and be told we should all stop giving intoo our pain .if only 

    You are joking? This I got to see.

  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    We all got passes a sultana .we then had too close our eyes and feel the texture ,shape etc .then too chew very slowly ..they also discussed issues of pain on emotions like anger etc .then the teacher got very irritate when we couldent do it seriously .perhaps she should of taken her own advice lol.i will never forget that day 
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    There was one poor guy laid out on the floor as had severe back problems .they Dident have the extra time too help him .so we all had too help him 
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Is it compulsory? 
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    They made me feel like it was .as it was through the pain clinic.there was meant too be six sessions of two hours a week .i only made two .which actually turned out in my favour .as I demanded too see a specialist .a lot of people that are in the pain clinic are pushed intoo doing these courses .trying too save money on treatments 
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Who pushes it?
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    You might get a more positive outcome from yours .but wasn't for me .i think some of the people who had lower pain problems as in one condition ,did get on well .i have multiple things and just couldent cope
  • YadnadYadnad Posts: 2,856 Member
    There was one poor guy laid out on the floor as had severe back problems .they Dident have the extra time too help him .so we all had too help him 

    Was this a genuine course or an audition for a TV comedy sketch?

    I can fully understand not being able to take all of this seriously, I will certainly go for the first of the four visits only to have it brighten my day - sultanas all squishy, whale music etc - I wonder if they have progressed to waterboarding yet?

  • YadnadYadnad Posts: 2,856 Member
    Is it compulsory? 

    I don't actually know. Reading the invitation in front of me it doesn't say anything about it being compulsory but you never know! Pain clinics are so keen today to get people off pain relief medication that they might use failure to attend as a good reason to tell the GP to not prescribe anything for the future in the belief that if pain was a problem you would have gone on the course.
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    They also spent a lot of time telling us how much are tablets were costing,and did we actually need them?
  • YadnadYadnad Posts: 2,856 Member
    They also spent a lot of time telling us how much are tablets were costing,and did we actually need them?

    The guilt trip as well!!!

    I thought that the pain clinics was there as professionals in their particular field to determine what medications would be best to alleviate pain and not to act as judge and jury over the health budget. Stupid statement - since when does the NHS decide that costs are more important than treating a patient. 

     
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    Yes I lost my temper at the end of the second session..so many strange comments like .if people wear a bandage or support it would make our mind focus on the pain more hmmmmmm. ..one of the lady starting doing slow exercises ,then said yes I feel pain and out of breath but this is normal .and we must pus trough .will be interested too hear how yours goes .met some nice people on the same course thougj. They dropped liked flies ......I wonder why 
  • debsidoodebsidoo Member Posts: 327 Pioneering
    I we t on one of these mindfulness courses.I liked the people there but didn’t find any benefit whatsoever. It assumed we don’t know our own bodies and relied heavily on “the Caerphilly cohort study” which was a health study of middle aged men with unhealthy diets in a semi industrial town.
    While it probably has some value I guess I just failed to see the comparison.
    Trying to think away your pain did not work for me.The only thing I will say is that if you approach it with an open mind you may find others to socialise with if you feel lonely.Whatever you decide.Hope it goes well.
      Debsidoo.x
      
  • GeoarkGeoark Member, Scope Volunteer Posts: 1,373 Disability Gamechanger
    Please don't take this the wrong way, but are these sessions actually being advertised the way being described here? I ask because if so then they are misrepresenting what they are doing.

    There are ways of coping with pain which do not rely totally on pain killers and at best these courses should be an introduction to some of these ways, but also it is important to carry these on afterwards. If they are making these claims then it is little wonder that they seem to have a low success rate in these classes.

    No, their role should not be just to determine what pills to hand out to control pain.

    For one there is a cost implication. Personally I am in favour of a scheme where after treatment, consultation etc you are handed an advice note that tells you how much it actually cost. Not to cause guilt but so people actually begin to appreciate the value of the service they are receiving. 

    Second if pills were as affective as this suggests many of our lives would be much easier and we would be far more active without worrying too much about pain.

    Third we are becoming much more dependent on opioid based pain killers and these carry their own risks and in themselves have added additional costs to the NHS

    The NHS is constantly making treatment choices based on cost, or in part cost. NHS trusts have finite budgets and need to operate within these budgets. With doctor practices having their own budgets they too have to consider cost.

    There also seem to be a notion because something causes pain it should be avoided. If you consider our bodies as bioligical chemical producing machines with a symbiotic relationship with many other life forms that our bodies depend on then you understand that it needs regular fuel and use to continue functioning. One of the issues is if we avoid movements that cause pain then parts of our body start to function below what they should and these have consequences for the body.

    I do exercises in the morning to get my body moving, and in the evenings to relieve the pain and tightness caused during the day.  Some of these deliberately cause additional pain. One of the easiest to describe is lying flat out on my back. Pull one foot up so it is resting flat on the floor next to the opposite knee. Move the raised knee towards the floor keeping the foot next to the opposite knee. In general I can move it between 5 to 10 degrees before getting pain. I then just leave it there. As the muscle relaxes the knee goes lower until the pain starts again. In the end it rotates about 80 degrees. If I try to do this from the start I would be in excruciating pain and would not achieve it. Other exercises include doing stretches until I cannot bear the pain, but allows the muscles to relax. Without these exercises I would not be able to function as well as I do.

    So yes sometimes pushing through the pain can have benefits.  Fortunately for me rather than being given the false expectations being mentioned here the person who went through these with me took the time to explain the benefits and what is going on, along with the warning that chances are I would alway be in pain, it would be a matter of how much pain and how I coped with it mentally.

    Don't get me wrong, I know I should be doing a lot more exercise but often it is getting the time. Many of the exercises I do are what most fit people do to loosen up before exercising. I can also do with losing a few stones in weight.

    So yes I do believe it has some benefits, but not when false claims are made, and we start treating grown ups as adults. I am happy to put up with the additional pain because I understand why I'm doing it and the benefits, I can understand why others would not when being the person speaking is patronising and the benefits are not understood. 

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    Well that's great for you and your pain condition .nerve damage for example would not show improvement with those things .and can u ask ask have you gone on the n .h.s.six week pain management course?
  • GeoarkGeoark Member, Scope Volunteer Posts: 1,373 Disability Gamechanger
    Hi @littleruthie123 if you mean having to go one day a week for 6 weeks yes I have. 

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    Yes  like I said. I think it did benefit some patients .especially with less complex problems than others .as it's very condensed intoo one category. And in my experience for my paticularl problems ;it wasent appropiate .yes I agree with the moving gentley can ease some muscle pains  as obviously the joint becomes stiff etc.but I think most of us with chronic pain conditions would no this already .there were around 12 on our group .and it's had halved after the first session .the courses in general were not working for most I found this out after .I'm glad you got positivity out of your experience but we're all different and have different pain issues .
  • YadnadYadnad Posts: 2,856 Member
    debsidoo said:
    I we t on one of these mindfulness courses.I liked the people there but didn’t find any benefit whatsoever. It assumed we don’t know our own bodies and relied heavily on “the Caerphilly cohort study” which was a health study of middle aged men with unhealthy diets in a semi industrial town.
    While it probably has some value I guess I just failed to see the comparison.
    Trying to think away your pain did not work for me.The only thing I will say is that if you approach it with an open mind you may find others to socialise with if you feel lonely.Whatever you decide.Hope it goes well.
      Debsidoo.x
      

    Thanks, I am going purely out of interest. Have no real belief in this as have been through it all before in the Mental Health Day Service unit. 

    As for wanting to make friends - no thanks - I'm quite happy with my wife and my life interests.
  • GeoarkGeoark Member, Scope Volunteer Posts: 1,373 Disability Gamechanger
    @littleruthie123 I am sure there are some pains that would not benefit from the exercise aspect, and as you say we are all different and without doubt there are some who would get little or no benefit from this type of intervention.

    I spend most of my time in pain, I find walking difficult especially when one or both of my feet are partially numb or I have a bad bout of pins and needles. My right arm and hand are permanently partly numb and get a lot of pain down my right arm. Both my hands regularly clamp up painfully, but again particularly the right one.

    The only pills I regularly take is pregabalin at night to reduce the leg spasms so I can get better quality of sleep. Not that they are helpful on nights like tonight when I cannot get to sleep. The hospital will not consider me for an operation as any damage done will be permanent and there would be of little benefit. I don't take prescription drugs because nothing I have tried has worked.

    So the biggest tool I have to manage the pain is my mental attitude. Work is a huge asset to me as it helps to give me something else to concentrate on, not that it reduces the pain or make it go away. It is just no my main focus for most of the day.

    Again, as you say we are all different.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • WaylayWaylay Member Posts: 922 Pioneering
    Wow. Just... Wow. I was so lucky with my pain education and pain management courses!

    How ignorant and idiotic are the people who developed / present courses like this?

    "...the pain I'm feeling is not pain really but is a particular feeling that my body has not learnt how to ignore! "...all that is required is to forget the pain exists."

    *Partially correct:*
    1. Chronic pain usually develops after an injury / illness / treatment. Even when that injury / illness / treatment has healed as much as possible, the brain continues to generate pain at the site (and sometimes elsewhere) even when there's almost nothing physically wrong. This is because chronic pain (not acute pain) is essentially a malfunction/disease of the nervous system. (Look up peripheral nervous sensitization and central nervous sensitization: http://www.instituteforchronicpain.org/understanding-chronic-pain/what-is-chronic-pain/central-sensitization ). If the CNS (Central Nervous System - includes brain) could ignore or forget signals from the injured/healed site, that might prevent chronic pain from developing, and it might reduce the amount of pain, but that's all. 

    2. How, exactly, do you train the CNS to ignore/forget a warning signal? One of the brain's major functions is to deal with warning signals, and it's unlikely to start ignoring/forgetting some of them. When chronic pain develops, the signals might be off, or the reaction to them might be over the top, but the CNS / brain tends to err on the side of caution (i.e. more pain) just in case. How do we get an unconscious system (the CNS / brain) that we can't control, and which is obsessed with keeping us alive, to do something so against it's nature?

    3. "Ignore" and "forget" makes it sound like we can control this. We can't. 

    4. Of course, paying less attention to the pain, decreasing pain behaviours (such as putting a hand on the bit that hurts, moaning), talking about the pain less frequently (so your social life is easier, and you aren't always focussed on the pain) might be what they mean by "forget". You can also distract yourself from the pain (reading, TV, video games, talking to someone, your favourite hobby, etc.), and this might be described as "ignoring" the pain.

    "...carrying out various activities and learning to understand how the brain thinks there's pain is a sure way of the brain being able to not recognise it. ...mindfulness meditation for 3min, stress management, eating and drinking the right foods and drink and sleep management will re-educate the brain."

    5. *Probably bollocks*
    There are all kinds of theories on how we might go about re-educating the chronic-pain-brain. Unfortunately, we're at very early stages in this research, so we really have no idea what might work (we're not even certain whether it's possible).

    However, the activities described above are healthy, so it's a good idea to do 'em. They all reducerstress, as well, and reducing stress is super important in people with chronic pain. But re-educating the brain? Hmmm.
  • WaylayWaylay Member Posts: 922 Pioneering
    Also: they seem to be implying that the pain isn't real, or isn't bad. Can't speak to the severity of anyone's pain (but mine), but ALL PAIN IS REAL. EVEN THE PAIN THEY SAY ISN'T REAL? IT'S REAL. Pain is generated by the brain, not the body. Injured body parts DO NOT send "pain signals". There's no such thing. They *do* send warning signals: "Warning: Something's going on in ((location)). Risk assessment?" This signal goes to the spinal chord. There, it has to pass a test: is it severe enough to be sent on to the brain? If yes, it whizzes on up to there.

    (When I write "the brain" below, I'm not referring to your thinking, conscious brain (your mind). I'm referring to a more ancient, instinctive, animal part of  the brain. This part of your brain isn't conscious - it's made to react quicker than a conscious thought, and to deal with situations which could be very dangerous in order to save your life/limb. You cannot control the actions or decisions of this part of the brain.)

    So: this part of the brain receives an incoming warning signal. It checks how severe the warning is ("OMG we're all dying!" to "kitten scratched me. 😼") Then it checks the context: Any other warning signals coming in from the body? Can we sense (see / smell / etc.) any danger? Does it seem safe? What happened the last time we were in this place / doing this activity / got a similar warning signal from that part of the body? Was it bad? If this brain decides that you're almost certainly safe, it generates the appropriate amount of pain to get you to react the right way (maybe washing a scrape).

    Different scenario: You're hiking in Cumbria. You go around a boulder and there's a tiger standing there. It lashes its tail, takes a swipe at you, and gashes your arm, badly. Before your conscious brain can even think, your animal brain has received the warning signals from your arm, assessed them, checked the context (Um, TIGER, and blood all over arm), decided that this is a very dangerous situation, and generates fairly severe pain (not disabling pain, because then how would you escape!) It has also sent messages out to a variety of other unconscious brain bits, saying, "get ready for action!" By the time your conscious brain thinks, "A TIGER? In the wilds of Cumbria? Huh? OW!", your arm is hurting pretty badly, you've already running away, and the pain is bad enough that you wrap your arm tightly in your dress when you stop running, to stop the bleeding. 

    So, what's the take-away from this long, rambling explanation? Pain is not created by injured body tissues / bones / etc. Pain is generated by the brain. So really, all pain, no matter what's causing it, is created in your head (brain) 😂, but it isn't in your conscious control, and there's not much you can do about "thinking your pain away".

    I hate it so much when a medical person assumes that my pain is psychosomatic, but really, it doesn't matter. All pain is generated the same way, in your brain. Even if the warning signal racing into the brain isn't from an injury, disease, etc., but from yoir mind, your that emotional state, your stress hormones acting on things, the animal brain doesn't know that. It assesses, looks at context, decided on the danger level, and generated pain.

    What am I saying? ALL PAIN IS REAL. It doesn't matter how it started, why you feel it, whether it's medically unexplained, etc., etc. The pain is as real as any other pain, and needs to be treated accordingly!

    I found my pain management programme extremely useful. Of course, it was intensive, residential, and 9AM - 3:30 / 4PM for 12 days, so they had a lot of time to cover things properly. I hope it turns out that this one is a good one...
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    The pain clinic the NHS run as been shrunk down unfortunately now. As they told me this .what started as a 12 week programme with a small group became a bigger class .questions couldent get answered in the time they had been given .as they had too rush through the majority .and for some more complex pain problems .it dident all connect for everyone .hence why the majority dropped out 
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    Hi yes the course I was on .had unfortunately been condensed down as the people who were running it told me .I 12 week course was condensed down intoo half that .so there wasent alot of time for patient input or questions  which caused frustration on us and the teachers .by the second session half had gone .the second down too a third .they put alot of different pain problems in a general criteria. They might be alot better elsewhere also .
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    Anything that works for anyone is great .through whatever avenue .if it had a higher success rate we would all be in alot less pain .I wish !.it can give you some tools with managing which some benefit from .but unfortunately the majority it dident .and that isent me being negative. That's the result of the pain course I went on .
  • GeoarkGeoark Member, Scope Volunteer Posts: 1,373 Disability Gamechanger
    @littleruthie123 it sounds as if the experience is as frustrating for the staff as it is for those attending. 

    It sound like they are cutting corners in the presentation and as you said they do not have the time to respond to questions. It is not hard to see that a potentially good course has been castrated due to those presenting it having to view their patients as a group, rather than as individuals.

    As I said in my last post, I don't believe my pain reduces it is just that when it is not the focus of my attention I can function better. But if I keep pushing it then I cannot cope so well. Similarly while everyone I work with are aware of my issues it is something I rarely talk about, they do however know when I am not coping well and ask if I am okay.

    Either way, I hope you do find something that helps you with your pain.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    @Geoark yes that was definitely the case .they were frustrated and it showed .it's a shame .thank you .and you also I'm glad you did get some benefit 
  • YadnadYadnad Posts: 2,856 Member
    All I know is that pain is a symptom of a partially dissolved/partially calcified and partially infected pancreas. Pain is also a symptom of peripheral arterial disease worsened by being a Type 1 diabetic. Great when sitting but the sooner I try to walk it is agony.

    Just those two situations alone actually do cause pain which isn't in my head through thinking it is pain. 
     
  • WaylayWaylay Member Posts: 922 Pioneering
    @Yadnad, That's what I meant, though. All pain is in our heads; Ok, technically in our brains, but still. ;)
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    Perinal nurapathy is awful and nothing helps I have lots of after some aggressive cymo therapy. It's not going anywhere .and can get worse .something that exercise etc can help unfortunately 
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
  • WaylayWaylay Member Posts: 922 Pioneering
    The more I read about the pain management programme experiences of others, the more I realise that I seem to have been incredibly lucky with mine.It definitely had some parts that weren't useful (the psychologist was not good with people, and could only give rote info), but wow. Post code lottery strikes again!
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