Looking for advice on 'everyday living' with chronic pain? — Scope | Disability forum
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Looking for advice on 'everyday living' with chronic pain?

k600r
k600r Member Posts: 3 Listener
Hello Everyone,
  I’ve been a chronic pain sufferer for 30+ years now and recently found this forum and after reading many members stories, realize I’m not alone in this battle. Hope to find something to help with my everyday living as the pain beats on you continually and as I’m sure your all aware, doctors aren’t giving out pain meds like they used too.
   Look forward to hearing from some of you with similar stories. My pain is mostly from oesteoarthritis, compressed disks, bulging disks, spinal stenosis and disk degeneration. 
 Lovely combination of problems don’t you think?

Comments

  • L_Volunteer
    L_Volunteer Community Volunteer Adviser Posts: 567 Pioneering
    Hi @k600r

    Welcome to Scope's forum. It is great to see you have joined us. I am glad you don't feel alone anymore. Unfortunately, this is not my area of expertise which means I hope someone with more knowledge in this area can respond to you soon. However, I do have fibromyalgia and for me, heat works the best for management  :)
    I am a Scope volunteer. I have knowledge about the following subjects, gained through professional settings such as high level education or employment: autism spectrum disorder, dyslexia, down's syndrome, social, emotional and mental health difficulties, assistive technology and education. Pronouns: She/her.
  • Alex_Scope
    Alex_Scope Posts: 213

    Scope community team

    Hi @k600r and welcome to the community! To help with your query I've moved this discussion into the 'Chronic pain and pain management' category so that it can be more easily found.

    I'm very glad to hear that you feel you're not alone now, it must be a real weight off the shoulders, so to speak! Don't hesitate to shout if you need anything, we'll be happy to help.
    Alex 
    Online Community Coordinator
    Scope

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  • Reg
    Reg Member Posts: 99 Pioneering
    Hello @k600r

    A very warm welcome to the forum.

    Sorry to hear about your chronic pain. I have mild CP and osteoarthritis and dysplasia so know what you mean.

    So far, my GP practice seems to want to dole out lots of pain killers but I also read that GPs are being encouraged to reduce opoid based prescriptions.

    I also find that heat helps - or at least it is a distraction. Have you found anything that works for you? 

    Are you able to get into a bath? I still dream of being able to get into one or a hot tub for the heat but dare not because I know I will get stuck and would be mortified if someone or heaven forbid the fire service had to rescue me out of it.

    I keep meaning to try a microwave heat pad but at the moment I am still using the traditional bottle.

    Is there anything else that you use that is not prescription based?
    Reg

    I am a Scope volunteer.
  • Sandy_123
    Sandy_123 Member Posts: 2,192 Pioneering
     @k600r hi and welcome to the community, sorry that you've had pain for a very long time, have you tryed pain management programme, I'm presuming you have, after being in pain for so long. Nothing worse then having to deal with daily.
  • k600r
    k600r Member Posts: 3 Listener
    Thanks for reaching out and yes, I’ve tried a lot of treatments over the years. Besides living with the daily pain my joints have deteriorated because of disk degeneration and as a result I have my left hip replaced 3 times. My right knee is gone and the next in the replacement list. 
       I have seen pain management specialists multiple times, a waste as they have all told me to get off of all pain meds and excercise to strengthen my muscles and tendons. I told them if it was as easy as excercise I wouldn’t be here. This opioid **** that everyone is on now is detrimental to us that suffer from chronic pain. I have also tried shots in a large number of anesthetic combinations in my back, hips, etc. to no avail. I’ve had nerve blocks, nerve burning, acupuncture, one thing after another and the only thing that works is opioids.
       So my PC I had probably ten or twelve years ago understood my plight and gave me what I needed to function on a daily basis. Believe it or not, Codeine sulfate worked the best for me, better than Morphine, Demerol and Hydromorphone, at its worst, I took 12 Codeine Sulfate tabs a day and a 50 Mcg. Fentanyl patch. With that I could work and lead a pretty normal life.
       Then came the opioid crisis where everyone who takes opioids is deemed a junky. After all that took hold my doctor and zIm sure many others had to wean us off of opioids as they were stuck in the middle of this whole movement. So I was taken off of the Codeine and Fentanyl and now take 12 Tylenol and 12 Ibuprofen a day and 8 Tramadol.
        So I’m on disability because I can’t stand, sit, lie down or lift anything because of excruciating pain. I sleep maybe 3-4 hrs a night and basically can do much of nothing without putting myself in more pain. So now I collect my Social Security early because of my disability. It sucks for me, my wife and kids.
       Well that’s part of my humble existence, just day to day living right now.
  • k600r
    k600r Member Posts: 3 Listener
    Yes I have tried heat, pads, bottles. I’ve used topical anesthetic, opioids, acupuncture, physical therapy, nerve blocks, etc. None of it helps. I tell you if I didn’t believe in God I probably would have ended it years ago but I couldn’t put my family through that kind of misery.
       I do thank all who have reached out, it’s nice to actually talk to others experiencing the sane type of problems. People who do not go through this just don’t understand how it affects you and those you love. My wife is a peach I’ll tell you, unbelievable woman who has stood by me all these years through thick and thin. I would be lost without her for sure.
  • Alex_Scope
    Alex_Scope Posts: 213

    Scope community team

    @k600r it's wonderful to hear you've got good support around you, from your family and now from this forum too. It does make a huge difference. I have mild cerebral palsy, and while I don't live with daily chronic pain I do get pain and fatigue if I exert myself too much.

    I find having someone to talk to, not just about how I'm feeling but also about them and their day, or just to do things we enjoy together acts almost like a painkiller in itself. 

    I'm sorry to hear you were taken off the meds that were working for you. As you've said, current NHS & NICE best practice indicates that there's a lack of evidence of effectiveness of opioids and the potential for harm. 

    Perhaps talking to someone outside of your circle of loved ones could also help? Sometimes we need someone completely removed from a situation to vent to, and relieve some of the stress and pressure we're feeling. I guess this forum could fill that gap, but maybe your GP could look into counselling sessions to try out?
    Online Community Coordinator
    Scope

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