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My experience of chronic pain

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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi all, thank you so much for participating in this discussion. It has been so interesting to hear all of your stories and be able to support one another. I myself have been dealing with chronic pain since the age of about 15 (I'm now 20) due to cerebral palsy and amplified musculoskeletal pain disorder. I know when I am having a bad day it is hot water bottles that are amazing!
    Scope

  • Nigelrl
    Nigelrl Community member Posts: 31 Courageous
    Chortle its what I call good/bad. Good to find any sort of relief bad you have to. 

  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    Hmmm, whilst there seem to be some signs of repair it depends on the damage. For me during the first 8 years the nerves were not permanently damaged and could recover after either reporting too much pain or no sensation at all for some time. As the damage changes areas every few months then after the next change some of the damaged nerves had some time to recover. However, for the last 5 years the nerves stay damaged or broken and, whilst they can regrow the rate of regrowth is pretty negligible. Often what people take for recovery is getting used to secondary nerves not normally registering strong enough to notice until the major ones stop working altogether. If the damaged nerves are not moved then the most likely result is no pain but numb areas are noted but if moved then they report pain at high levels instantly at around the level of the damage that caused the problem nerves. I have simply gotten used to walking around with a foot and toes almost completely numb and feeling like my leg is in boiling hot water from ankle to mid-thigh. Unfortunately the latest change has started pain in the foot and toes and also the ankle due to my walking one foot on toes and one foot normal to minimise suffering and only lasted a few days. My biggest problem now though is that if the heel of the damaged leg touches the floor i receive a massive jolt of pain from heel to knee at the back which, prior to this change, hurt much less than the front. This seems permanent but I am hoping it will stop at the next change.

    CRPS is currently understood much less than Fibromyalgia and Fibro isn't understood much so it's certainly not easy to give advice regarding it.

    My condition doesn't have a name and no doctor, not even those in the Pain Clinic, have ever heard of it let alone know how to treat it. I have simply argued with doctors that misdiagnosed it and always tried to get increasing medication for it to keep walking but now I am at the maximum amount of the strongest pain killer used outside of emergency treatment. Fentanyl varies between 50 and 100 times as strong as Oramorph and I am on 125 microgrammes per hour in addition to taking Paracetamol. Pregabalin, Nortryptylene and Tramadol but none of them are significantly helping except for the Fentanyl. 125 is the maximum allowable in NHS guidelines. The Fentanyl equates to between taking 3,000 and 6,000 Tramadol per day, assuming that taking that many didn't kill a person, lol! Fortunately apart from going into withdrawal regularly the side-effects are minor and I do not seem to be "getting used" to it as some doctors have suggested which a very odd reaction to Opiates as most people do get used to it making it less effective.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • YorkshireLass01
    YorkshireLass01 Community member Posts: 21 Courageous
    Oh how I relate to your story! I had always suffered with spinal problems from the age of 21 when I had my daughter, that was 1981. By October 31st 1995 I was in agony, crawling the floor in pain and begging for help... the following morning I awoke to find myself numb all below the waist. Long story short, emergency MRI revealed prolapsed discs at L5/S1, emergency surgery relieved half of the numbness, leaving me with all the back of my right leg and a part of my left numb and still numb 23 years later. The pain you describe when you stand on something... my god that’s awful (and I went through labour twice!). CPS was diagnosed 15 years later when I presented with arm pain to a pain specialist, that and the wonderful Fibromyalgia, when I described brain fog, lethargy and other problems. I’m in pain every single day, yet PIP was awarded at standard rate and my car removed. I’m the antithesis to independent! 
    Where there isn't it, you can't expect it.
  • YorkshireLass01
    YorkshireLass01 Community member Posts: 21 Courageous
    Topkitten said:
    I have only spoken to one sufferer of CRPS in the past so know only a little about it but am a little confused by your description of how it affected you. The person I discussed it with before also had it start after surgery, in her case to repair a broken bone, if I remember correctly but she described it as more of a genetic problem linking it back to that and how it affected a part of her brain.

    What I find confusing is the description of the effects on your leg apart from the neural pain which I understand much more thoroughly.

    The major reasons for Chronic Pain generally fall into two broad groups, arthritic and immune system problems and secondly nerve problems. What should be remembered though is that both groups will cause ongoing nerve issues and, sooner or later, neural pain (neuropathic as doctors describe it). Of course there are always additional problems mostly centred around mental health issues due to the lifestyle changes.

    One important thing to remember for anyone with Chronic Pain to remember is that that pain is a mental response to whatever the trigger and, as such, can be dealt with and controlled by the brain. It is also possible to train your body's response to pain to further increase control. So long as the condition is not progressive lives CAN be improved by better control.

    So, in trying to understand things better I will try to separate out the various parts which is what most people do even without understanding.

    ANY surgery will cause an amount of nerve damage which is why they always state that you can get problems after any surgery. That damage can be almost nothing, pins and needles sensations, numbness and actual pain and depends on how much they have to physically cut the skin and what changes they make internally. Also keep in mind that almost every part of the body has nerves running into it, even the bones, except for the heart itself. Currently there is no way to repair nerves and they do not repair themselves, once they are damaged they will always be so. Nerves themselves do not "feel" pain they simply report to the brain in the same way they would to damaging the part of the body they are connected to (Referred Pain). To explain this think of a nerve attached to the big toe. It will report pain if you hurt your big toe but may also do so if you hurt your ankle, knee, hip or spine or anywhere in between if you damage that particular nerve. Basically any damage to that single nerve anywhere in the body will tell your brain that your toe hurts.

    Here I would like to express a theory I have developed which I keep talking to doctors about with results between "you are stupid" to "you might be right". No one else seems to have considered it.....

    If a person has an accident the body will produce two things, adrenalin to overcome pain and endorphins (similar to opiates) to fill the brain receptors and reduce pain. These will help a person combat serious damage caused by an accident yet allowing that person a chance to move about to save themselves. When the body stops doing this that person then goes "into shock". It is designed to be a very short time response and once it stops the body goes back into normal state and the brain will begin to feel the pain. It is controlled by the brain and I believe that it is possible to train it. It is my belief that this system is put into overdrive by people suffering long term pain but that, after a certain period, will shut down and reset before starting up again. This is what most doctor, I believe, explain as break through pain or flare up's, a short or long period where the body is resetting and thus feels the full level of pain. Most doctors say it is random but I do not believe it is, though the length of time it functions is different from person to person. Again I believe that the periods are longer in people more the subject of pain. Therefore, the more times it has been used the longer it will run for without resetting. In a person with Chronic Pain I think that the periods between "break through's" will gradually increase or be shorter or both. Every person I have spoken to who does suffer this way has said the same thing, all I have done is, I think, to explain why.

    Now back to the next point, apologies for sidetracking a bit, lol!

    No matter what the cause of the original pain the body movement in the area concerned is affected and people move differently stressing parts of the body more than usual. Even if the body doesn't stress more but physically stimulates certain nerves continuously then eventually the nerves will become damaged and then report pain permanently. The reason for this is that the slightest movement of the body, even of moving a toe, will cause a small movement of some nerves along their whole length. Passing through any damaged area causes them to be triggered and, if triggered enough, the trigger is permanent 24/7. The only way they would not register pain to the brain is if that particular nerve isn't moved. Going back to the big toe for a moment.... any walking movement, any weight transfer or even a twitch to music could cause pain. Encase it in a cast or do not walk and, assuming no other types of voluntary movement, the trigger stops and, after a recovery time, the pain also stops. I say recovery time loosely because it is my own experience and observation rather than fact. I believe though that it is the minor movement that reports pain even if normally used in a damaged nerve. Nerves become damaged over long periods and dependant on how often they get triggered. In my case it took about 8 years to start proper neuropathic pain instead of or in addition to referred pain and because it's my spine where the damage is done where movements are less than in extremities.

    Ok, I apologise as I have gone on far too long, so much so that I have forgotten the point I was making, lol! If I have missed anything or anyone has further questions I can respond here or elsewhere dependant on the opinion of the original poster. I hope that some might have a better understanding though and this contributes in some way.

    TK
    your comment “nerves don’t repair themselves” is wrong. 
    When the sciatic nerve was severed in my right leg in 1995, I went numb all below the waist. The surgeon who operated told me that feeling would eventually return because nerves grew back at a rate of 1mm a month. Sure enough, by a year, just the back of my right leg and a little of my left remained numb. It was too badly damaged to return to “normal” but I’ll take being able to walk (albeit in pain) over being paralysed and in a wheelchair any day thanks! 
    So I don’t know where you got your information, but they were wrong. 

    Where there isn't it, you can't expect it.
  • Nigelrl
    Nigelrl Community member Posts: 31 Courageous
    Bottom line is we are all individual and whilst many conditions can be diagnosed even within that parameter there can be big differences. I'm starting to cope with less meds purely as I feel I can deal with the pain better. Before on full meds I had pain and no mental awareness to be able to deal with it, plus for me the benefits of being able to do things has a massive positive effect on my mental health. In my what I called locked in cycle of pain and depression I was,literally attempting self amputation. 
    Yorkshirelass I'm so impressed as sometimes it can be so tempting to not walk. 
    So we are all individuals with one common factor
     pain. 
  • BillMcKim
    BillMcKim Community member Posts: 4 Connected
    The world is full of characters and Nigel you sound like one of them. Chronic pain has been with me since a road accident in 2011 and has impacted every aspect of my life, more so the impact on those loved ones around me. It seems that one of my biggest problems is the denial and non acceptance.

    Like Nigel, I am a big character both physically and psychologically. I work in the construction industry where disability is still very much a dirty word yet probably contributes  most highly to industrial disabilities.

    As my problems with health persist it becomes more apparent that the higherarce see me as more of a problem than contributing to the success of the company.
    Like Nigel I continue to fight the beast and every now and then get a little self satisfaction when I achieve something or enjoy an event even if paying for it days afterwards through pain levels.

     I would also support the idea of psychiatric support as I was one of the first to put it down until I gave it a fair go and found some relaxation techniques and was able to blow off steam without being judged.

    This has been a very interesting stream with great stories and views, one day some one will find a drug that blocks all the pain and allows us to continue a near normal life. Power to you all.
  • Agilitynutter
    Agilitynutter Community member Posts: 3 Listener
    i hesitate to add my remarks to this group as my experiance of pain has been so much less. A year ago I fell and broke a rib and slipped two disks, which touch a nerve going down my leg so I have referred pain. Unfortunately treatment was not available until 9 months later when I could hardly walk at all. Being given crutches has helped me enormously so I decided to try to lose weight to mimic the effect of the crutches. I have never managed to lose weight efficiently normally(!) but this time it seems to be working so I offer the method which I find relatively easy. Check what you eat and reduce your sugar intake to less than 10mg daily. (Wholemeal bread can have a lot of suger in it) You can eat what you like but just observe this regime. I was also told to cut up cucumber and tomatoes into small dice, mix them togather, add pepper and herbs if you like them and have a big bowl of this  in the fridge to dip into when you need something to moderate your appetite. I have  managed to lose a stone in 4 weeks without feeling deprived and hope to lose another stone - it will be slower this time. For anyone whose medication or lack of mobility (in my case)  has caused them to put on weight this might be a helpful remedy. I do also try to walk with my crutches a bit further every day and now I weigh less I can manage a few hundred yards with stops! I do hope that no-one thinks that I am rubbishing their problems; my small disability was really making me miserable, but this diet  has given me hope that I can improve my situation.
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    The official description states that only peripheral nerves can regenerate and generally only in young people. Central nervous system nerves cannot regenerate and at middle age and beyond even peripheral nerves regeneration rate is negligible.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Nigelrl
    Nigelrl Community member Posts: 31 Courageous
    No ones pain supercedes another as it is so individual. Agilitynutter hits a major wound for so many chronic pain sufferers. Take vastly reduced mobility, add a touch of boredom eating and add the weight gaining side effects of many drugs Pregabalin is way up there. It's not a vanity thing but when you gain 3 stone and 4 inches in less than 6 months there are huge ramifications. Both physically and mentally. Yet this is almost none existent as a problem with NHS. 
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    @Agilitynutter if you could still be mobile with two slipped discs then you coped better than most who say they cannot walk with only one and you should not feel you do not cope well with it. I know I go on about walking with many more issues but it has built up slowly and I am on horrendous amounts of medication to do it.

    Pain is very subjective and whatever pain people feel they will always say it hits 10/10 at times even if a logical comparison with others would seem to indicate a much lower figure. Anyone asking within the health services will always expect you to compare it only to the worst that YOU have experienced.

    There is also an extreme oddity about nerve pain and especially that caused within the spine. Should they MRI a very old person they might find extreme amounts of degradation that causes little or no pain where minimal amounts of damage in young people can be excruciating. There is no correlation between damage and pain caused in such cases. Personally I think that some of it is caused by muscle strength and how much muscles can pull the skeleton about which, in older people, happens much less so as the muscles waste away gradually and simply do not have the strength left in them to do so.

    No matter how bad a persons pain is it can always feel like a complete movement stopper. Maybe it could be worse and maybe it will be later on in life but at the time it just cannot be coped with. I know that in the past I have said some of the pain I suffered was the worst it could ever be but now I have experienced worse and continue to cope simply because I have had to cope with worse still at times. For example I remember a night when I had massive pain in 13 different places and pain always bumps my BP up. On that occasion it rose from my normal 160/90 to 240/160 which is seriously dangerous as it is supposed to be 120/80 but the pain was so intense my body couldn't cope any other way. Getting pain in only 5 or 6 places now seems so minor compared to that night at times that, even now, I wonder how I could talk and move about in that state. Sometimes we do what we have to despite pain, we simply have to ignore it. I know that if an emergency occurred and I had to lift, carry and run with 2 or 3 of my children or grandchildren I would find a way to do so no matter how much I would suffer later and despite the fact I can barely walk. There are times and situations that the normal rules simply go out the window and we rely on Adrenalin to keep going.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • YorkshireLass01
    YorkshireLass01 Community member Posts: 21 Courageous
    i hesitate to add my remarks to this group as my experiance of pain has been so much less. A year ago I fell and broke a rib and slipped two disks, which touch a nerve going down my leg so I have referred pain. Unfortunately treatment was not available until 9 months later when I could hardly walk at all. Being given crutches has helped me enormously so I decided to try to lose weight to mimic the effect of the crutches. I have never managed to lose weight efficiently normally(!) but this time it seems to be working so I offer the method which I find relatively easy. Check what you eat and reduce your sugar intake to less than 10mg daily. (Wholemeal bread can have a lot of suger in it) You can eat what you like but just observe this regime. I was also told to cut up cucumber and tomatoes into small dice, mix them togather, add pepper and herbs if you like them and have a big bowl of this  in the fridge to dip into when you need something to moderate your appetite. I have  managed to lose a stone in 4 weeks without feeling deprived and hope to lose another stone - it will be slower this time. For anyone whose medication or lack of mobility (in my case)  has caused them to put on weight this might be a helpful remedy. I do also try to walk with my crutches a bit further every day and now I weigh less I can manage a few hundred yards with stops! I do hope that no-one thinks that I am rubbishing their problems; my small disability was really making me miserable, but this diet  has given me hope that I can improve my situation.
    If only it were that simple….Your "referred pain" isn't that, it's true pain from the herniated discs pressing on the sciatic nerve, which is what I have suffered with since 1981. I wasn't overweight then, have gained and lost it over the years, and don't eat a lot of sugar anyway! I think that what you're doing is great, for you, but a lot of it is mind over matter, you're determined, so that helps. 
    Where there isn't it, you can't expect it.
  • YorkshireLass01
    YorkshireLass01 Community member Posts: 21 Courageous
    edited July 2018
    Topkitten said:
    The official description states that only peripheral nerves can regenerate and generally only in young people. Central nervous system nerves cannot regenerate and at middle age and beyond even peripheral nerves regeneration rate is negligible.

    I was 35 when it happened, so not young and am now 58, the numbness left has stayed like it for 23 years…
    Where there isn't it, you can't expect it.
  • YorkshireLass01
    YorkshireLass01 Community member Posts: 21 Courageous
    Nigelrl said:
    Bottom line is we are all individual and whilst many conditions can be diagnosed even within that parameter there can be big differences. I'm starting to cope with less meds purely as I feel I can deal with the pain better. Before on full meds I had pain and no mental awareness to be able to deal with it, plus for me the benefits of being able to do things has a massive positive effect on my mental health. In my what I called locked in cycle of pain and depression I was,literally attempting self amputation. 
    Yorkshirelass I'm so impressed as sometimes it can be so tempting to not walk. 
    So we are all individuals with one common factor
     pain. 
    True Nigel. I have a high pain threshold and am a stubborn Yorkshire woman, that combination can have (see does!) a negative affect on the things I do. I'm currently suffering badly because I didn't ask for help in building flat pack bedroom furniture last week! 
    I get days where I slump into the old 'why me?' or 'I'm fed up of this lark' but I still force myself to at least walk around my small housing development with my dog. 
    But, according to PIP I can walk more than 50 meters, so it must all be in my head eh? They took away my independence 14 months ago  :/
    We are individuals, you're right, we all get told different things by different doctors and specialists, some try to say it's not as bad as we say it is and others try to tell us it's all in our head (my daughter is currently having this), yet with the one common factor of pain. Oh how I wish it was all in my head!
    Where there isn't it, you can't expect it.
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    Just thought I'd comment again. I've been using CBD in my vape, and it seems to be helping. Can't tell for sure, obviously, but I'm hopeful....
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    It's funny, @Topkitten , I never say I'm at 10/10 pain, because I now realise that it can always be worse. !2 years ago I would have said that my knee was at 10/10. Not anymore! I hope I never get anything above that 9.5 (landed me in the hospital on IV morphine for 5 days, which was hellish, although the pain relief was most welcome), but the idea of it.... Eek. 

  • Caroxley
    Caroxley Community member Posts: 5 Listener
    @Waylay I have started taking CBD in hemp oil. You put 2 drops under your tongue. I use it 3 times a day. I have been using it for 4 weeks and already it is having a good effect on me. It has reduced my pain enough to sleep better which in its turn has made my days sleep free!
    Now, I am not claiming it is a wonderful cure-all but I am hopeful that if it continues improving my pain, I will be able to reduce my Oxycodone (slow release morphine) under my GP's supervision. This, out of all my meds, is very effective but unfortunately is also addictive and having taken it for 15 years I know I am addicted to it. Now, I wonder if it is causing more harm than good.
    So, as usual, I live in hope and my hope is that CBD oil will be a natural replacement to the morphine. Hope it continues to help you. I would cross my fingers for you but my fingers are too stiff and sore to do that today. Lol Caro Xxx

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