Hi, my name is Michele2020! Lumbar spinal stenosis, feeling lonely

Michele2020

Hello! That may sound happy, but I am anything but. I have suffered from Lumbar Spinal Stenosis since 2022. I have gone from using a cane - to - a walker - to a wheelchair. I have every rotten problem that goes along with Lumbar Spinal Stenosis. Sometimes I am depressed - sometimes I am angry - sometimes I am bitter. But mainly, I feel lonely. I have family and friends, but they don't understand how I feel. I know that is not their fault. I am grateful for them, and their support and yet, at the same time, so lonely…

Bluebell21

Good morning @Michele2020 welcome to the Community. I hope you enjoy your time on the forum. Any questions just ask.

Thank you for telling us something about yourself. I am sorry you are having such a challenging time.

We are a friendly and supportive forum so have a look around and join in when you are ready.

Take care.

luvpink

@Michele2020

Hi and a very warm welcome to the community.

Rachel_Scope

Hi @Michele2020 and welcome to the community. I'm sorry you're having such a hard time. I always say that having a disability makes you go through a grieving period as you try to adjust to your new life. It's wonderful that you have supportive people around you, but I can understand that it's easy to still feel lonely.

Have you looked up any support groups near you or on facebook so you can connect with people that may understand? There are members here who also have lumbar spinal stenosis so I've updated your post title so that hopefully they'll see it.

trytosmile

From trytosmile (I know stupid user name)

I don't find this web site easy to use . Would be easier if we had just one place to leave comments, but the lumber stenosis condition can fall into various headings within the scope community… ie "everyday living".

I first tried to "chat" at the begining of my diagnosis November 2025 and did get a few replies but no one contacts me now. I am beginning to think my posts are lost somewhere.

Rachel is right, I never thought about being a period of Grieving, but it is like that . Grieving for what I can't do instead of being content with what I can do. But the hardest is the pain keeps the diagnosis on your mind every day of your life.

My Consultant , and a few things I have read about, point to this medical problem being "common" and the diagnosis for most people suffering from back pain., I am yet to find a help group in my area or anyone with the same diagnosis. I even went to a Fybromyalger group who at least understood living daily with nerve pain. I suspect that the majority of people with lower back ache don't know they have stenosis as it took me a battle to get an MRI to confirm it,

So Michelle 2020 and all other sufferers, keep going, you can live with this. Its the mental stress that is the hardest , that and the fight with the medical profession who have never had back pain and can't really empathise.

Most of what I do I have done myself. My own research and adjusting my own life. I found a very good sports injury massage professional , and adjusted my everyday budget so I could afford to go every three weeks to have a Deep tissue massage that helps release the tightness of my muscles and toxins. I bought a book on amazon written by an American physio.

MY GP said he wasn't qualified to treat me and could only deal with pain control…. ha ha not impressed with that. and be careful with Physio , find a one who knows what Lumber stenosis is.

I am in early stages. I keep trying to go for a walk every day and not sit too long just watching TV. On the days I do sit for too long or walk too far I suffer that evening and the following days. But try so hard to do some stretches following what I learnt on line. Most sites are American where I assume lumber stenosis is more common. Most of what I have researched and found leads to avoid surgery for as long as possible as results are varied and not always of any use. With me its degenerative, will get worse, no cure, do the best you can (medical words form my consultant). He also said the speed of the degeneration varies with each individual and so "get on with it yourself, Live with it". I have made it my mission to beat it….. laughing as not sure how.

Mentally I am a wreck, but strength in getting as much info as I can digest has helped. My friends eyes gloss over when I try to tell them what its like, so I don't mention my struggles any more. Its good to find this community in that I have found my thorts are no different from others that suffer. Its not where I want to be in retirement (I am 73 this year) . Sleeping , not a lot. Having fun…. not a lot, Biggest to deal with at present is finding a small ground floor property to move into , preparing for the future degeneration. My home is degenerating with me at present ….laughing. Need to but some bright coloured cushions and dye my hair pink !! (not really just being silly)

My latest trial is my Driving licence is up for renewal, I am 73 in October and have to renew every three years. I am awaiting a G1 form to declare my diagnosis for the first time but I have googled that I should be able to continue driving with lumber stenosis but would get fined up to £1000 if I don't declare it. So fingers crossed I can retain my licence. I don't go far but I can get to my local park where I feed and love to watch the swans. So beautiful.

There is life out there. Take care everyone, take joy in small things . xc

Rachel_Scope

Hi @trytosmile. Sorry you're finding the site confusing. We're able to move posts into the appropriate category so don't worry about where to post. Typically members will start a discussion and once that has reached it's natural conclusion it won't be revisited. You're always welcome to start new posts or get involved in other discussions. You might like this discussion as members check-in each day

https://forum.scope.org.uk/discussion/113840/how-is-your-day-going

Do you have mental health support? It's great that you're doing your own research. Are you on a waiting list for a new flat that's more accessible?

trytosmile

thankyou for replying. try to smile