I'm in constant pain — Scope | Disability forum
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I'm in constant pain

BeauT
BeauT Community member Posts: 1 Listener
Hi everyone,

Not really sure where to start.

I fell 18 years ago while 3 months pregnant and damaged my pubis bone.....used crutches for a while....but did go back to work and was advised to take ibuprofen for pain......18 years on....ive had to stop taking ibuprofen as they have damaged my stomache lining.

Unfortunately I was injured in an RTC 4 years ago agrevating my back and this has now left me with limited mobility.

Im now on a cocktail of pain killers from tramadol codeine not fogetting the trusted paracetamol.  Ive been on others as well as antidepressants and worn ibupatches.

Nothing works for long....Im in constant pain....i work from home now as commuting is just not posdible....im also studying an honours degree in computing but its an uphill struggle.

Im trying to keep my pain levels in check...earn a living and complete my degree....sometimes I just feel like giving up.....im not even entitled to a disibility badge so im literally hpusebound as i cnt park near enough to any location.

Apologies for going on....Im just wondering if anyone is in a similar boat?

Any advice appreciated.

Kind regards

Beau

Comments

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Hi @BeauT, welcome to the community! It's great to have you here.

    I'm so sorry to hear about your pain- I know it's such a difficult thing to live with. I wonder if you're under a pain clinic at the moment? If not, that might be something to discuss with your GP. We also have a lovely chronic pain advisor, Claire, who is happy to discuss any questions you may have. I hope today is as kind as possible to you.
  • feir
    feir Community member Posts: 397 Pioneering
    Yes, i think i might be similar but not sure so will reply in way too much detail just to be sure. All pain killers that used to work now don't work on my pain at all. Morphine did when i was in hospital, it took about 10 hours to start working but it finally did, and gas and air worked pretty much instantly (but also wore off just as fast). I'm housebound now too, also reliant on others to do the majority of what i used to do.

    Codeine was working for me quite well over the past few years when my pain was irregular and infrequent, every few months or so for a few days, for my hip pain (probably caused by lumbar spine region). Nothing worked on my shoulder pain at all (probably caused by neck/cervical spine region). I learned that i couldn't use my left arm for anything strenuous or to carry anything of weight, so a handbag or even my key fob would be too heavy and trigger an unbearable pain in my shoulder. my kids would carry milk back from the shop and things like this so it wasn't too bad, I'd sometimes accidently hurt myself anyway but the pain went away so long as i didn't move my upper body for a few weeks (which was extremely painful to do anyway so i tended not to do that). So being really careful not to overdo anything helped there and my hip wasn't too bad, my mobility was limited all the time because it was slightly painful in my lower back to walk but i could still manage to do everything when not in pain and could walk several miles if i needed to so no big issue.

    Not sure what happened last year but the shoulder pain became permanent, i can't do anything at all with my upper body without it being painful and the pain has spread to my neck and back of my head also. A few months later the hip pain had become permanent it also moved deeply into my thigh and right buttock and lower back, and is particularly bad in my ankle for some reason. That leg struggles to bear weight at all, although i can walk using aides that take the weight off my ankle for short distances  but the leg pains are there constantly, they make sitting uncomfortable they make standing unbearable, they make me tired and sick of being in pain and looking forward to having operations that might help. These pains were a lot worse when i was still trying to do everything, still trying to be a mum and trying to look after my home and myself. I applied for PIP when i came out of hospital as it was the first time in months i had not been in agonising pain that had made me want to die and i felt physically capable of filling in the form. The way they rejected me for that, the way they worded it, was really offensive and pretty much dismissed me as genuine, but it really helped in other ways as it slunk me into the biggest depression i've had in my life where i just gave up for several months, literally gave up and stopped doing anything, stopped caring, my brain was unable to function anyway so i couldn't have functioned if i wanted to, but stopping doing anything helped the pain become a lot less. The depression helped because i wasn't even aware that i was doing nothing for a few months and so wasn't bored. And since the pain got less i now can tell what sort of things are triggering it to become really bad, Although i do get stabbing pains all over my body for no apparent reason, still not figured out why, and don't seem to be able to anything to stop the muscle twitches.

    So erm that was probably too much information but not moving helped me and still does. I'm at the Dr tomorrow so know i'll be in heavy pain again because of that so kind of prepared for it. it gets mild though eventually and is more bearable but i wish it would just go altogether and i could have my life back. There are disabled people who do talks on youtube and other social medias about how to live with pain, i didn't find them helpful but you might? The one i got recommended is Vidyamal Burch but there'll be others i can't remember.

  • Gizmopeppie1962
    Gizmopeppie1962 Community member Posts: 10 Listener
    My son is in pain with his back hes sufferd chronic back pain for nearly 16 months. Hes had exrays scans hes had physio ive paid for kiropractor on his back hes been taking cannabis oil  hes been on every pain killer going. One of the pain killers he had to stop taking because they thinned his linning of his stomch  hes still in pain now and trying to get through his work which he his finding very hard to do hes said he feels like giving up  he dosnt think he can carry on no more suffering with this chronic back pain. Hes tried and done everything but non of the doctors carnt diagnose his pain no one knows what it is  and its driving him mental having to put up with the pain every day. Ive even bought him a new bed an matress. Hes had ice packs cream sprays just about everything. Dont know what else to do. Anyone got any suggestions. 
  • Misscleo
    Misscleo Community member Posts: 647 Pioneering
    Same here for over 50 years. Been on pain clinic programme a few times
    As you say all painkillers ruin the ining of our stomachs.
    Had a few ops but just seems to move pain over not cure it.
    Don' know what answer is.
    The 1st lady NEEDS a blue badge but cant get one.
    Yet so many on here get badges when they arnt in pain and dont NEED one.

  • feir
    feir Community member Posts: 397 Pioneering
    edited June 2018

    Scratch all what i said, it applies to what i figured out works for me and might not work for him. But will again say if he can figure out anything that makes his pain worse that'd help as he could avoid doing that. And it might be time for him to go on the sick for a while and rest as this may help him.

    Maybe just keep going to A&E every time he can't cope with the pain? Or call 111 for advice because every time you call them your GP gets alerted and so they will know just how often his condition affects him and how badly. I'm kind of lost on help really,took me ages to get anything proper sorted and even now i know i'm not getting all the help i need so not doing that great a job of sorting out things like this.


  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    @Gizmopeppie1962 Has been to a pain clinic? I'm 10 years on from a back injury, and still have chronic pain, but pain clinic and pain management helped me to learn to live with it.
  • Gizmopeppie1962
    Gizmopeppie1962 Community member Posts: 10 Listener
    How can anyone expect you to learn to live with chronic back pain   my son is suffering with chronic back pain and has been for about 18 months  hes always saying he cannot carry on much longer like this  there must be someone out there who can help him another specialist dr who can take a look at him or do some more exrays or scans on him   hes finding life so hard to carry on with  and his work duties its very hard for him and hes trying so hard to keep going with pain getting through each day 
  • feir
    feir Community member Posts: 397 Pioneering
    If nothing really works to get rid of the pain then you have to learn to live with it.

    Pain killers don't help me any more. I only use them to get high occasionally when i've had enough of everything. That's my way of coping.
  • [Deleted User]
    [Deleted User] Posts: 43 Listener
    Only If you can do it try mediation. 
  • Rebs
    Rebs Community member Posts: 5 Connected
    I get a lot of muscular pain and when i am in agony i use a heat pad or go to bed with the electric blanket on, i am also on morphine tablet form I find that taking a hot drink after i have taken the tablets helps them to work quicker. Everyone is different and what works for one person may not effect another person in the same way. 
  • Nigelrl
    Nigelrl Community member Posts: 31 Courageous
    BeauT life has been tough hasn't it. 
    Hat off to you for working on degrees
  • NCL
    NCL Community member Posts: 20 Courageous
    Hi BeauT. Times tough. Great to hear how you're refusing to be ground down.  Why can't you get a blue badge? I didn't get one for several years but have one now, and it makes life a lot bigger because I can e.g. go to the sports centre, which was inaccessible before. Is it worth trying again? Maybe get support with the application from CAB or the council.
    I have chronic pain back/pelvis/hip pain, as a result of birth defects, an accident, and long life. I am writing a lot because I want to share how I live as much as possible with/in spite of my pain.
    I have a list of physical, psychological and emotional strategies I use to manage pain, and I try them out in a fairly random way to see if anything helps.
    Massage (including self massage tool for trigger points), cold packs, hot water bottles, relaxation (I learned autogenics), visualisation (floating the pain away in a bubble, shrinking it), distraction, sleeping when I can, and all those stupid drugs. (I have quite a range of drugs and use some of them like diazepam and lidocaine patches quite infrequently, others, like morphine, anti anti-inflammatories, every day.) (I also try to back off the drugs once a month to assess whether they're really making much of a difference. One day this will reveal that I don't need them any more!) I drink loads of water - that is supposed to make a difference with skeletal issues but I'm not sure why. I also try to do exercise every day. I don't find that easy - it can hurt a lot - but not doing it my pain gets worse because my muscles get weak. There are days when I'm completely stuck and nothing works, but I count my successes rather than my bad days, and try to notice good things (pollyanna?). There's also the benefits of having a good talk with a mate, and a long cry. Sometimes I just have to accept it's a bad day.  I find pacing myself useful, and plan activities using the "spoons" idea (at the best, I have about 20 spoons of energy a day. At the moment, I have between 1 and 5. 1 spoon days involve brushing my teeth and resting, distraction. Five spoon days involve the gym, a phone call, eating, brushing teeth and showering, and maybe a bit more.) 
    I was wondering what you do to manage the pain. Do you have any strategies that work for you? 
    One last thought. Not being acknowledged - e.g. not being "given" a blue badge - I think that made my pain worse. I manage my pain better when I really believe myself and refuse to let other people's inability to believe me undermine my own reality. Just because you can't prove it to anyone doesn't make it unreal. I find this gives me permission to be compassionate and kind to myself. Life can be really tough with chronic pain and only you know how hard even little things can be. Be as kind to yourself as you would to a friend experiencing this trouble. Celebrate every little thing you squeeze out of life in difficult circumstances. 

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