Dealing with chronic pain
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chronic back pain

karlynkarlyn Member Posts: 1 Listener
edited May 2019 in Dealing with chronic pain
Hi I suffer with chronic back pain in lower back im on various painkillers including morphine patches.i'm now at the stage of only being able to walk about 20steps and can't go any further ..without resting now.my next step is to have a foldup wheel chair to help on times I need to travel and can sit and rest. Sitting im not in pain.it's agony doing household chores now.changing bed linen is a very painful experience as is vacuuming the floors.explaining to son and daughter in law ids benefit from having fold up wheelchair in car ,i would still be able to enjoy trips out with grandchildren ..my DILaws response was ...oh you don't need one,you'll be ordering your coffin next. So don't get full support  from all family.i do from my daughter which is good ...i be had a mobility scooter in use for many years now. I would love to hear responses. To my problems.many thanks ..

Replies

  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    edited May 2019
    Hi @karlyn I am really sorry to hear this, that's an awful response. How are you doing today? Have you been in touch with your GP or Occupational Therapist for suggestions on getting a wheelchair? You may find the Disable Gear website useful, please keep us updated.
  • WaylayWaylay Member Posts: 922 Pioneering
    Hi there, I also suffer from chronic back pain, with muscle spasms and sciatica. I can't sit, stand or walk very long or my pain and stiffness increase,and the chance of triggering a back spasm increases. Back spasms are 6-9.5/10 pain, very limited mobility to unable to stand alone, and last minutes to 9 days (usually hours to 3 days).

    First, the practical stuff:
    Pacing may help you a lot, if you don't already do it. Look up "pacing for chronic pain". The most important part of pacing is that you set a baseline (time, distance, etc.) - look up how to do this. Then you only do that activity for that long, no matter how good or bad you're feeling. Good day? Don't be tempted to do more! It'll likely cause more pain later, and maybe a bad day the next day. It's frustrating as H*ll, but it works well once you get used to it!

    Example: I can't do much at once without risking a spasm. Let's say I need to clean the bathroom. My baseline for sitting/standing is 3.5 minutes. I split up the cleaning into small chunks, and do a chunk every time I use the loo. So the first time I wipe down the window sill and the mirror. Next time I wipe the back of the toilet and the top of the seat. Next time I wipe down the sink and try to remove a bit of limescale. etc. etc.

    I also find different ways to do things: I can't sweep/mop at all (1 minute to spasm-ville!), but I've found that if I attach cloths to my feet I can do the (very small) bathroom floor space by shuffling around. An Occupational Therapist was very helpful in coming up with adaptations and different things to try. You may also find that something that would cause a flare if you did it for 15 minutes might be fine if done for 5 minutes.

    The Emotional/Relationship stuff:
    It's really difficult when important people in your life don't get it, don't listen to you, or worst of all, don't believe you! You can try to educate them about them about what back pain is like, and ways in which people with back pain cope with that suffering and change how they do things to deal with it. There are various explanations on the internet, both written and video. If your GP is helpful, maybe she/he could talk to your DILaw? This sometimes helps, but many people who haven't experienced chronic pain just don't get it.

    My Dad poo-poohed my pain for years. He told me I should "push through it" (the opposite of what the pain clinic taught me!), began making innuendos that I was using it as an excuse not to work, and eventually told me to my face that he no longer respected me because I let a little pain "end your life". Ha! A little pain. I tried to explain that I wouldn't be taking venlafaxine, lamictal, gabapentin, ibuprofen (can't anymore), paracetamol (same), tramadol, benzos and morphine if it was just a little pain. My worst back spasm landed me in the hospital for 5 days on IV morphine. The NHS doesn't admit you for nothing! He'd just list the pains he's had (broken ankle, broken nose, hernia operation) and say that he didn't let them stop him. I tried to explain the differences between neuropathic pain w/ massive muscle spasms and a hernia op, but he waved it away. I tried to explain the exhausting, ever-present, yet frustratingly fluctuating nature of my chronic pain, and how difficult it was to plan or accomplish things. Nope. It didn't help that he lives in Canada and I'm in the UK, so he rarely saw me, nor that I tried my best to hide the pain when he visited.

    Eventually I simply told him that any remarks about my health were off-limits, and that if he brought it up, I'd hang-up the phone/leave the room. This might work with your DIL, or perhaps your son could get it across to her. It worked with my Dad for a few months, but he started making snide remarks about living off the State (I'd do anything to have my career back! Argh!), and then about how I'd taken him for a ride because he'd paid my university tuition (1994-2000 with breaks) and I wasn't bothering to use my education, so I'd cheated him. It got to the point that I felt constantly undermined by him, and cried 1/2 times we talked. My long-standing MH problems, which had worsened due to the pain, losing my life, etc., got worse every time we spoke.I already felt useless, pathetic, and like I'd lost everything good in my life - I didn't need my Dad to reinforce those feelings on a weekly basis!

    I had one last talk with him, and told him that I was struggling with suicidal thoughts, and his comments and attitude were making me worse. He responded with the cruelest thing anyone has ever said to me. I realised over the next few days that I had to go no-contact, and I did, for 3 years.

    If your DIL doesn't improve through education, setting firm boundaries, or your son talking to her about it, you may have to cut her off. Obviously your son and grandkids are involved, but perhaps you could simply stipulate that you'll only be there when she isn't. That's a serious step, and not one to go for unless you're being seriously harmed, but it is there, if needs be.

    This is crazy long, sorry. Hope something in that might help.
  • WythenshaweBiWythenshaweBi Member Posts: 5 Listener
    Everybody has different pain thresholds. What may merely irritate one person may actually cause deep throbbing pain in another. Part of it is possibly to do with genes; another may be how often someone feels pain (possibly your papa's stance). However, I don't think anyone should "pooh-pooh" someone else's pain. Walk a mile in their shoes comes to mind. If it helps, try some meditation based on visualisation. It is not a cure, but may just be able to take the edge off your pain a little. Treasure every moment when the pain subsides, and try to think of something symbolic while you do, like a colour, a sound, or if you're into crystals, only hold rose quartz when you're in the least amount of pain, and after a couple of months doing that, try holding the crystal when you are in pain and remember how you felt when you were not in pain. Hugs
  • croxiecroxie Member Posts: 4 Listener
    I keep a little diary, I write in each day. I make a note of pain levels and just brief note of what I did i.e. went shopping, met a friend for coffee and also days (like today) when I am in more pain and just stay at home. It’s helps when you’re having a bad day to look back on better days and see the things you achieved.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Thank you for this @croxie, this is very helpful!

    Also a warm welcome to the community. :)
    Community Partner
    Scope

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