Dealing with chronic pain
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Dealing with chronic pain 24/7

jaknbaz1jaknbaz1 Member Posts: 1 Listener
edited June 2018 in Dealing with chronic pain
Hi i am new to this and would love to know how everyone deals with chronic pain 24/7 thanks 

Replies

  • EthelEthel Member Posts: 7 Listener
    I use a variety of pain medication, including Lidocaine patches, a TENS machine, music, pacing, visualisation, gentle exercise and movement. I use the principles of the Expert Patient Programme. I hope this helps.
  • pippy3pippy3 Member Posts: 2 Listener
    I am also in chronic pain 24/7 and sadly I have used the Tens machine and every medication that the Medical people can give me.  I am currently taking oramorph medicine which sadly has been reduced by my GP...Now the pain is even worse and the only thing I can think will ever relieve it is not to wake up in the morning....but I am not suicidal, please do not think that.... But I can see no end to anything but continuous.!!! 
  • wrinkly65wrinkly65 Member Posts: 25 Courageous
    reflexology,chiropracter, Tai Chi, Tens machine, steam room, visualisation- helps with tolerance to pain, turmeric, magnesium.
    if money is short i would go for tens and tai chi.
    using all these has made my life tolerable most days or in the least bearable on the worst,
    .the magnesium helps with sleep and restless legs.
    Also against advice I find best to take a nap mid day otherwise pain goes off Richter scale, just half hour.
    Sadly it is continuous but using above has made my life tolerable and mobility is improved, its slow but keep at it and find what suits you.
    Good luck
  • isabel1isabel1 Member Posts: 11 Connected
    This probably sounds really off the wall. But maybe prayer or reike may help. A lot of people do benefit. Like the old fashioned laying on of hands and you'll think I'm crazy. But in Christ's time on earth miracles did happen if you had faith. I know it's hard. Well to be truthful I realise realise I'm lucky after reading some posts. As far as having a nap and going against medical advice is concerned I would suggest do what helps you. Obviously within realms of sensible. I don't mean ignore drug advice exetra just simple things like napping. That's called listening to your body and to you I admire your gumption
  • erraid7erraid7 Member Posts: 2 Listener
    Acceptance..... It has taken a long time and trying myriad medication.   I have been down the path of opiates only to find they are of limited use.  I have discussed this with my GP and we agree that opiates should primarily be saved for acute extreme or end of life situations.  Withdrawal from same is to go cold turkey.  Done that...eugh. 
    I have got past the feelings of hopelessness though it still makes me cry.   I know when to stop and rest.  My pain is a part of me like an extra limb.  
    Do everything you can to be comfortable... especially your bed.  It needs to be just right when you need to take refuge.   
    Be prepared to avoid medication when you can.   Long term painkillers decrease in effect.  You may suddenly wonder why you are taking something...that medication may have stopped working for you. 
     Chronic pain doesn't show. People around you won't see it.  
    Try anything .... TENS, physio, massage, gentle exercise, Bowen technique, Alexander method, yoga.  None of these will mess with your system like painkillers do.  I could well take more than I do but they can affect liver and kidney function.  
    Don't be palmed off with a prescription and 'get in with it.'
    It's your body.
    Find things to make you happy.  My dog has sàved me!  I have stopped trying to please people and let the stress go.   All has helped.  I wish I could tell you it will all go away but I can't.  Expect to crumble from time to time.  The biggest hurdle is recognising that it is a part of your life.  Be strong.
  • isabel1isabel1 Member Posts: 11 Connected
    Accept the things we cannot change and carry on with support. I think all things are interlinked really. On this site sorry I'm new and will get better at navigating..I have a pain all the time in left side of jaw and it has been investigated endlessly almost to the point where I don't want to walk the walk of shame to say I'm here again. Hidden pain that can't be given diagnosis is the worst thing. And I suppose that is why I do talk of spiritual. Not just because of that issue. Just because of a lot of circumstance with family and yes life so I do identify and will continue pursuit and acceptance. It goes against my nature to surrender and accept but at least I know there are many people in similar boat meaning we are all the same x
  • JojoCJojoC Member Posts: 2 Connected
    For me chronic pain goes hand in hand with fatigue - I always say that I find the fatigue harder than the pain to deal with, but that might be due to pain being so much a part of my life now that it's just there all the time. I can't actually remember what it's like to not have pain of some description. I take regular pain meds, I take a full dose of paracetamol 4 times a day and have codiene 30mgs if it is bad I find it is better to have paracetamol and codiene separately rather than co-codamol as you can control how much codiene you are taking and have less risk of developing a tolerance to it so it ends up not helping or you need to take more than you did etc. It also allows the paracetamol to build up in your system to dull down everyday aches and pain. I've also got tramadol for when I'm really struggling but I don't like taking that if I can at all help it. I find mindfulness meditation really helpful and have built a couple of sessions each day into my routine - this I can then sort of 'top up' if I'm having a bad day. I really recommend learning about mindfulness as it has so many benefits for life in general and I am a lot less stressed and even less judgemental since I've begun applying it's principles. It has really helped me accept long term health issues I have. There are lots of resources online for mindfulness. I also like the calming, gentle, movements of Tai Chi. I think the best way to handle chronic pain is distraction, so if you can find something that you love to do, that needs concentration you can make the pain slip into the background. We all know that feeling, often late at night when the pain feels really severe but it isn't actually much worse than during the waking hours, it's just that with nothing else to think about the mind fixates on the pain and sort of magnifies it. I have some guided meditation/visualisations I can listen to (I use my headphones so I don't disturb his lordship..) This can sometimes help distract my mind enough to allow me to get some sleep. Then, as with everything, there's good old, boring old PACING - learning to pace myself and trying not to do too much on rare relatively painfree days is difficult and I still have days when I've pushed myself too far and end up wiped out for the rest of the week.
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    edited June 2018
    Welcome to the community @JojoC and thank you for sharing this with us- some great tips, and I can certainly relate to the frustrations of learning pacing! 
  • SallyMartinSallyMartin Member Posts: 14 Courageous
    Hello all, not chronic physical pain, but brain pain! I have multiple sclerosis, but despite that, I can still speak 4 European languages fluently! But can I find a job that works within school hours (I have 2young boys 10&8) as well as an annoying ex-husband (yes he doesn't understand m.s! Not use to me no longer being the big breadwinner of the relationship, though he denies that!). So instead of a job, my overbearing mother has organised for me to go to a brain injury charity a few times a week! Aaarrrggghhh! But all I really want is a job! Heyho onwards and upwards as said!
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    I wonder if it might be worth taking a look at Scope's Support to Work programme, @SallyMartin?
  • isabel1isabel1 Member Posts: 11 Connected
    Change husband. Change mother in law. Be yourself and go further. I hope someone can help with immediate work issue. Gosh sorry but sounds like your pressured whilst also admitting your highly intelligent 
  • isabel1isabel1 Member Posts: 11 Connected
    Realise I'm frustrated wen off work. Where I feel like a person. Sorry it was harsh and too much. Hope you get the help 
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    I have fibro and chronic pain and I’m dealing with a recent bereavement. The pain in my body multiplied by a thousand times when I was going through the shock of bereavement initially and has worn off to my regular levels of daily pain. I absolutely dread going through that level of pain again unprepared and so I’m going to get a g p appointment and discuss pain clinic or pain management. I did ask a locum about pain management around the funeral and he said it’s normal to feel this way at this time and better to go through it than bottle it up. What BS! I’m interested in finding out more about magnesium and restless legs as I have that. How do you find out if you have deficiencies? Is it trial and error? Thanks 
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • robinhood8robinhood8 Member Posts: 120 Courageous
    Hi hi pete moving don't give up see your GP
  • JojoCJojoC Member Posts: 2 Connected
    Hi debbiedo49,
    I use a Magnesium spray at bedtime I bought it on Amazon, it seems to help a bit with my restless legs and muscle spasms at night. I also like to soak my joints in epsom salts (which are rich in magnesium). From the GP I get amitriptyline to help with restless leg syndrome and help me to get to sleep.
  • janejrjanejr Member Posts: 142 Pioneering
    I think acceptance is all you can do when you've tried everything else. I hate pain and always have so for me it's been unbearable. I'm always in pain and at times just cry , I'm not sure if it helps pain but it helps my head. Don't let it stop you from living your life you've got to carry on making plans for things. I find it's worse when I'm in public places and in so much pain I can't move. I make sure I've always got someone with me so I'm not so embarrassed. The other day I had a mad fit of laughter because I couldn't walk, glad I had a friend with me. Music helps me, loud with my earphones on, I can drift away to a different place. I used to be able to get in a very hot bath that helped my knees and ankles. Can't do it now though. I now accept I will never be that fit energetic women that couldn't sit still and walked miles and miles for fun. It is as it is and slowly I'm coming to terms with it. Good luck with finding things that will help you. People on here are always willing to try and help and many of us suffer with chronic pain x
  • RitzyRitzy Member Posts: 36 Courageous
    Hi all
    Pain is something I have to deal with on a daily basis.  It's a lonely life when you have to suffer pain 24/7, as one of the members said, you can't see it so people around you don't understand.  I have been doubted so many times when people see me they think I'm OK, when I say I'm having a bad day, it's either endless amounts of sleep that helps me get through the day, or meditation.  I was on so many meds., that I gained a vast amount of weight, and I looked awful, when I think of how I was like a walking zombie, because the Dr just increased my meds., each time I visited the surgery, some medical people do not specialize in Fibromyalgia, and I got to understand this as I had hardly knowledge of this condition myself.  I can't remember the last time I was pain free either, it's been so long since I woke up and experienced life without my joints and muscles  feeling stiff and pain free, I used to be able to sit in a warm back and that helped for a while, until my condition got worse, arthritis  and other health issues, and I got stuck in the bath and couldn't come out, so know I have to have walk in showers, and they have recommended me to go to pain management, finally, the person I saw last week seem to believe me even though I was talking through tears, that day was a bad day, and I hope that with more sessions I will able to get to a better place in my mind and be able to get a little bit of normality in the not too distant future.  I hope this helps a few people reading this. Ritzy x    
  • MisscleoMisscleo Member Posts: 646 Pioneering
    The last i was free of pain i was 8.
    My foot broke at school 
  • RitzyRitzy Member Posts: 36 Courageous
    Dealing with chronic pain is something only those people like us that are dealing with know how it feels
  • SuesySuesy Member Posts: 3 Listener
    It's the feeling you get when trying to explain the pain your feeling and they just bypass it with a shrug and say try swimming and gentle excercise and take your medication, it will improve, ..... it doesn't!!! 
  • Shona1Shona1 Member Posts: 10 Listener
    My pain has gotten worse over last year my doctors have changed me over to slow release morphine pain patches but have had to keep increasing them as was still in real pain. It’s so frustrating losing your mobility to pain and have a constant companion of pain. I am having to hand my DLA car back and rely on my older sister to drive me places. My other sister has been very supportive driving me to work, doctors etc but it’s still hard having lost the little freedom driving offered.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    edited June 2018
    I am quite lucky in that I do not get addicted to pain killers and I have been on all the common ones, nor do I "get used" to them to reduce their effectiveness. Ofc any doctor I explain this too doesn't believe me and starts either misdiagnosing me or quoting "guidelines" as if they were rules.

    Firstly let me cover one subject. TENS machines, Physiotherapy, massage and gentle exercise are all for muscular pain, which is the lowest type of pain.

    Second level of pain is physical damage, arthritis damage, crumbling spine and others.

    The third and final level is neural pain often called referred pain caused by bones impinging on nerves. Nerves cannot feel pain they simply report to the brain that whatever part of the body they are attached to is hurting. Sciatica and slipped disks usually fall into this category.

    There are only 5 pain killers that directly affect neural (mid-nerve) pain. They are not in any particular order but ALL are also mild anti-depressants so often have, like AD's, unacceptable side effects. They are....

    Pregabalin
    Gebapentin
    Amitryptylene
    Nortryptylene
    Duloxetine

    Other pain killers (nerve-end) I will try to rate but don't forget that sometimes trade names are used in prescriptions rather than the chemical name. I will also rate their strengths vs Morphine.

    Paracetamol      1/360  (also Aspirin)
    Ibruprofen          1/222  (NSAID)
    Naproxen           1/113  (NSAID)
    Diclofenac          1/14     (O)
    Codeine             1/10     (usually prescribed as Cocodamol)
    past here are all opiates
    Tramadol           1/10
    Dihydrocodeine  1/5
    Pethedine           1/3
    Morphine            1/1       (oral form, prescribed as Oramorph)
    Oxycodone         1.5/1
    Morphine            3/1       (IV form)
    Methadone         2.5-5/1
    Diamorphine       4-5/1
    Buprenorphine    40/1
    Fentanyl              50-100/1
    beyond this there are many other opiates but only Ketamine is given to people and only in hospital under normal circumstances.

    There are many other opiates of various strengths not normally prescribed. This list is the common and well-known ones.

    Most level one pain is treated by Cocodamol and or Diclofenac plus paracetamol and Ibruprophen. Despite claims on a few sites no opiate is very good at dealing with nearal pain and neural pain killers are hopeless at strong non-neural pain. However the neural pain killers are often prescribed for depression and not for pain unless diagnosed as neural. GP's generally do not understand why these work the way they do but if a script they follow says "prescribe" then they do.

    You will find some sites altering the numbers a little because it depends on which chemical compound is used by certain manufactures and whether they include small amounts of something stronger / weaker or perhaps less carefully isolated. Tramadol and Oramorph, for example, are based on Morphine Sulphate. I won't try to list them all you can google if you are really interested. For those chemists out there Morphine is a multiple carbon ring structure, what was called way back in my day as a Benzene ring. They avoid that description now as Benzene is toxic and they do not like to associate negative connotations.

    I hope this helps people clarify what they are on and why.

    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.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    @Shona1, you do not have to be able to drive to have a Motability vehicle. Anyone (3 named and 6 temporary, I think or it might be 3/3) that passes the rules for that vehicle can be named as a driver (for example Carers) however, the car must ONLY be used for your benefit. They could go shop for you but not use it to say go to work or to go out anywhere else they want to that is not for your benefit.

    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.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    edited June 2018
    Sorry, I forgot. The problems I have with Chronic Pain are listed in another post.

    https://community.scope.org.uk/discussion/45757/how-much-pain-is-bad#latest

    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.
  • Shona1Shona1 Member Posts: 10 Listener
    I used to be able to drive more but as my health has deteriorated so has my ability. Just hard to have to go through this process I only hope the results are worth it as public transport is not an option when you’re constantly in pain. On the bright side it is helping me with talking to people experiencing similar problems which has helped a lot. 
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    I can relate to that @Shona1. Up until the last few weeks I could drive my car but now it just sits outside. Even though it is fitted with a hoist and inside is a mobility scooter, I cannot use it to go indoors as my home is not suited to wheelchair and scooter use and I have no ramp to get through the door. So I'm stuck indoors and quickly going crazy. I can't use public transport because I cannot go that far to get the scooter nor could I get it on or off the bus. Even if I could though the shaking of the vehicle would cause terrible pain. However, even more of a problem is my agoraphobia which, for me, is an irrational fear of strangers and strange places. A bus would be a nightmare and I have had a panic attack on the very few occasions I have used a taxi ti get home from A&E. Being in such close proximity, even in the back seats, is more than I can cope with. Without the car I am completely lost.

    Maybe if I could use my wheelchair indoors and could bring the scooter in then I could g out at least a little but I have waited a month so far for my GP to refer me to Occupational Therapy and now I have to wait again for someone to be allocated.Even if they agree I can move to an accessible place I will have to wait until my turn comes up and then try to figure out some way of figuring if it will suit me without being able to go and see it.

    The thought of dealing with situation is making me very anxious before I even start the process.

    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.
  • veritercveriterc Member Posts: 197 Pioneering
    I went on US official websites (Health Ministry, major hospitals, etc) and found they had marvellous video and interviews about dealing with pain.  These helped enormously  - there is a list of some on https://aftercancers.com/helpful-websites-for-survivors/
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