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Hi, my name is Painfullyme68! chat about spinal stenosis

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Painfullyme68
Painfullyme68 Community member Posts: 1 Listener
Is this the chat group for spinal stenosis? Then I am in the right place. I've had this horrible debilitating pain for over a year now. I've heard of others having it; however, they are still able to get around fairly well. I am not. I've been on Norco while in the hospital recently.  The hospital beds must have helped because I was able to stand and walk fairly well without pain.  As soon as I came home to my old bed, getting up from it in the morning is excruciating. My daughter got me a commode since I can no longer make it to the bathroom.  How humiliating! Norco is no longer working even though I take two at a time. I go to pain management on March 21st of this year 2023. I've heard sometimes the shot doesn't work, but I'm a diabetic and can't get my sugars under control therefore, surgery is out of the question. So, it's the epidural shot for me.  I pray it gives me some relief. Anyone else have this pain?  Please chat with me, I feel so alone and desperate.
Painfullyme68

Comments

  • chiarieds
    chiarieds Community member Posts: 16,130 Disability Gamechanger
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    Hi @Painfullyme68 - & welcome to the community. This is a forum for anyone with a disability, & we have many members with spinal stenosis. We also unfortunately have many members who experience chronic pain on a daily basis, so you're not alone, & this forum is very supportive.
    I'm sorry for all you're suffering, but pleased you're going on a pain management course soon. In the meanwhile, you may find some of the links here helpful about managing chronic pain: https://forum.scope.org.uk/discussion/102784/resources-and-tips-for-those-living-with-chronic-pain

  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    Good morning @Painfullyme68 welcome to our great group, as chiarieds has pointed out we all have our different Demons (disabilities) 
    Bless you with your stenosis, i to have it, i'm into my 3 years since mine was diagnosed, all be it i have always suffered with other problems with my spine. It sounds like yours has gone full blown, straight away with the problems your having with incontinence side of things, I really do feel for you with the pain, but glad your with the pain clinic, hopefully you will find the right pain relief for you. It's going to be trial and error i'm afraid with your bed and chairs/seats, so if your thinking your bed/materess could be affecting you, you may need to try a replacement or i found the materess toppers cheaper to experiment with, I can only sleep in the curled up side position for comfort.
    As for walking around, my first year was impossible, until i found a balance with my pain killers, i walk with walking sticks most days now and wouldn't win any races ha ha. You will get there and find your own level with things.

    Any way have a look round the site and pop into the categories section, the coffee lounge is great for friendly chats and may be helpful for distraction, have a look at the link our lovely chiarieds has shared with you. Enjoy 
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    Hello @Painfullyme68

    Welcome to the community! You are more than welcome in joining us on the community :) I have popped your post into our physical and neurological impairments section of the forum, so you can find more people to chat with :)  

    I'm keeping everything crossed for you the shot works 🤞
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • petur64
    petur64 Community member Posts: 31 Courageous
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    Hi @Painfullyme68! I'm new here too. I too have been diagnosed with severe lumbar stenosis and I am waiting for very likely spinal decompression. this started a year and a half ago when I had a bad fall at work. I was first referred as urgent as it was thought to be CES but lucky it was not, seen a spinal surgeon but he would see me back once I had a full knee replacement( which is happening on June the first yay!)
    in the year and a half my situation has got a lot worse, where I now rely on a wheelchair and walking sticks.
    I can't complain about the NHS but i'm constantly waiting. Now I fear I have even more damage done and it is very debilitating. I'm fed up with all the tablets, I wont go back to work anymore, and yes, at times I too felt desperate not knowing what to do. Cant see the GP, cant find anymore info, and in constant pain.
    I came here like you, to talk to others, share experiences and get more information about living with a disability.
    If, according to my GP, its not so severe, why then are they (NHS,Council) going to refurb my bathroom and place a stairlift? Someone is not telling me something!!
    I hope you find the relieve with your new treatment. 
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