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Dealing with chronic pain 24/7

jaknbaz1
jaknbaz1 Member Posts: 1 Listener
Hi i am new to this and would love to know how everyone deals with chronic pain 24/7 thanks 
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Comments

  • Ethel
    Ethel 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.
  • pippy3
    pippy3 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.!!! 
  • wrinkly65
    wrinkly65 Member Posts: 28 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
  • isabel1
    isabel1 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
  • erraid7
    erraid7 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.
  • isabel1
    isabel1 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
  • JojoC
    JojoC 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_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 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! 
  • SallyMartin
    SallyMartin 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_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    I wonder if it might be worth taking a look at Scope's Support to Work programme, @SallyMartin?
  • isabel1
    isabel1 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 
  • isabel1
    isabel1 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 
  • debbiedo49
    debbiedo49 Member Posts: 2,904 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 
  • robinhood8
    robinhood8 Member Posts: 122 Courageous
    Hi hi pete moving don't give up see your GP
  • JojoC
    JojoC 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.
  • janejr
    janejr Member Posts: 144 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
  • Ritzy
    Ritzy 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    
  • Misscleo
    Misscleo Member Posts: 647 Pioneering
    The last i was free of pain i was 8.
    My foot broke at school 
  • Ritzy
    Ritzy Member Posts: 36 Courageous
    Dealing with chronic pain is something only those people like us that are dealing with know how it feels
  • Suesy
    Suesy 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!!! 

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