lumber stenosis

trytosmile
trytosmile Online Community Member Posts: 8 Listener
in Everyday life

I am not sure if I have completed this correctly as am new to the web site.
I have only recently (sept 2025) been diagnosed with lumber stenosis and have been unable to find a local group with whom I can "chat" too about this uncurable condition.

Mental overload with some information but sometimes its just good to chat with like minded people , rather than gather info from the medical web sites. No-one can tell me how fast this will progress or whether you can actually "live a normal life " thankyou

plus what would I need to "TAG"

Comments

  • Mary_Scope
    Mary_Scope Posts: 3,085 Scope Online Community Children and Family Specialists

    Hi @trytosmile and a warm welcome to the community from me!

    That's a really recent diagnosis and sometimes that can come with information overload, how are you feeling today?

    You can tag things you would like from the community such "lumber stenosis" and that can help other people who are searching the forum with the same query fnd your post and hopefully reach out😊

  • trytosmile
    trytosmile Online Community Member Posts: 8 Listener

    I FOUND THE STENOSIS SITE BY ACCIDENT AND DONT KNOW HOW TO RE FIND IT.

    I READ ALOT OF THE COMMENTS FROM 2021 ONWARDS WHICH WAS A BREATH OF FRESH AIR AS i HAVE THE SAME FEARS.

    i TRIED TO RE-FIND THE LUMBER STENOSIS PAGE BUT ITS NOT IN CATEGORIES

  • Catherine21
    Catherine21 Posts: 8,452 Championing

    Welcome always loads of people to talk too 😊

  • Rosie_Scope
    Rosie_Scope Posts: 7,193 Scope Online Community Coordinator

    Hi @trytosmile, welcome to the community.

    Here is the Spinal Stenosis chat that you found earlier: Spinal Stenosis Group Chat

    You can bookmark certain posts using the bookmark function. When you visit a discussion, click the little bookmark flag in the right hand corner to save it. I have included a screenshot below of what it looks like on my PC/Laptop. It should be fairly similar on a phone or tablet. The bookmark icon is in the red box I've drawn:

    A screenshot of the spinal stenosis group chat with a red box highlighting the bookmark icon in the right upper corner

    Then any time you come back to the community, you can view your bookmarks through clicking on your profile picture in the very top right of the purple bar on any page. Yours will be a yellow circle with a speech bubble in it, so click that. A menu should appear with 'Bookmarks' listed. Click that and it should show any of the discussions you've bookmarked.

    But please note that as it is an older post, some members may not be active on the community any more. Hopefully we can get some more chat going with current members ☺️

    I hope that's helpful but just let us know if you need any more help! We've got some User Guides here if you'd like to read through how it all works.

  • trytosmile
    trytosmile Online Community Member Posts: 8 Listener

    Thankyou Rosie .

    I noted that previous "chats" were quite a few years back. I hope there are others out there as part of my journey is that I can't find anyone who has a similar diagnosis and hence finding it deal with. Self help.

    Story so far:- June 2023 back pain . Doctors gave me ibruprofen. Next visit refer to NHS physio who told me to go home download the NHS website and follow pilates. Next visit told six million people have back ache and you can't MRI them all. Sent me for ultra sound to rule out kidney stones !!!? It wasn't until sept9th 2025 that I had pains of severe pins and needles in my legs sent to A& E as doctor suspected caude equine syndrome. MRI revealed lumber stenosis between L 2 and L3, L4and L5 described as chronic to severe. Traverse across L2 and S2 Degenerative .So I know that even if it had been MIR'd in 2023 nothing can stop it but I would have been able to put into practice some of the things to slow it down.

    But can I slow it down , when all the consultant talked about was surgery. On getting home and researching Surgery is the last resort. Not always successful and can give more pain. So I have to live the best life I can and deal with it. Consultant referred me to GP but GP said he wasn't qualified enough so referred me back to Consultant. waiting for second appointment in six months. Now in no mans land researching myself. Some days good some days awful.

    So, have googled, have bought a book written by a physio on Amazon. Well written. I try the exercises and stretches. Most relief sit in chair and bend forward dropping arms to the floor. Know there is no cure , have to manage this . Fears:- How long do I have before zimmer frame, walkers, wheelchair and how to gauge how quickly it will progress and can I infact slow it down. Pain/ache really every day, find I am very tired all the time.

    Sorry, you all can tell my head is in a spin . I am 72 and reasonably fit. ie walk out everyday, or at least try, have as suggested lost eight pounds (not that I was overweight to start with) to reduce strain on the lower back. Brain never switches off from it, hopefully as time passes this will settle into acceptance. Cause:- just osteoarthritis progressive and degenerative.

    Thankyou to anyone reading this. A lot to accept at present. Pain does that to you.

  • trytosmile
    trytosmile Online Community Member Posts: 8 Listener

    Thanks also to catherine 21.

  • trytosmile
    trytosmile Online Community Member Posts: 8 Listener

    Still confusing. My above /previous chat this morning hasn't shown on another chat that I have found from Ian 77 and Generalsiatica can you transfer my lengthy chat over to the others or do I have to type it all out again. There seems to be two lines of chat. there is also a post from MRSMortimer , another knew sufferer , but her post is on another page somewhere. Thankyou. I am sure I'll work this out eventually,

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