Spinal stenosis group chat

hedgehoggirl · April 6

happy birthday for Tuesday SheffieldMan. Can’t imagine that. I reckon you must have a few helpful tips.

hedgehoggirl · April 6

reading earlier posts this condition is not a one size fits all. My right leg is most affected. I had the awful pains shooting down legs. The horrible electric shocks that had my leg shooting out.That has passed but very weak in that leg .I've fallen once in the garden, 😪what a struggle to get back on my feet. I’ve lost confidence now with walking outside. My other leg has started with pins and needles and I get hot feeling in the leg as if a hot pan had been put on. Sadly it’s started in my neck now with pains down arms. I had to fight to get codeine though no good really. I’m phoning doc tomorrow as I’ve read some of you have had steroid treatment, the injections in my back only worked for 5 weeks. Do any of my fellow sufferers take steroid tablets .? Thanks for listening

hedgehoggirl · April 6

I did leave a reply wishing you a happy birthday for Tuesday SheffieldMan but seems to have gone astray

trytosmile · April 13

Good morning everybody. (tryingtosmile)

There seems to be different links to read and find reply to posts about Spinal stenosis, but I am navigating to find out as many as I can.

Hopefully the "group" will increase . We all need to chat as there is little help out there . GP's don't really understand the pain. Self help is what we are all doing.

I am plodding on. I do as much as I can to calm the "constant ache". Today is a bit different as I was sitting comfortable(ha ha ) when my right leg started to ""twitch"" , cant describe it as its a new sensation. It started a few days ago, so monitoring it. I wish there was a specific unit , we all talk of the same symptoms but only get offered a variety of drugs but without one specific common treatment. I haven't researched finding a physio who specifically treats this odd condition. It needs to be speciffic exercises that wont make it worse.

Letter from my consultant was very "kind" and in the last paragraph he wished me luck. Will keep my file open under his remit for 2 years but I have no idea what happens after that. Wont offer surgery at this stage , so I am grateful for that.

I am 72 and trying hard not to cave into a bit of depression, just on down days, as I am still doing very well, Walk out everyday, when possible. Short walks then a sit down either in a cafe or the park bench. It really is something to try as often as possible.

Wednesday was a glorious warm day , Got out for a walk in the sunshine, however it didn't last and today its freezing, cold icy wind. I get very tired and feel the cold more now than I ever did. (but wonder if this is part of long covid !! or a side effect of Lumber stenosis). I take a multitude of vitamins. D, B12, Zinc, Vit c, calcium, cod liver oil and omega3. I'll try anything , all trying to support cartelidge , and muscles and mental health.. I watch everyone when I am out, and as more aware of lumber pain, often want to stop people who seem to be either bent over or using walking sticks to aks them if they are diagnosed lumber stenoisis sufferers.

To hedgehoggirl I haven't been offered any pain management from my GP, the consultant said I was doing more myself than he could offer. I use a hot/warm hot water bottle in a morning to warm up and open the blood flow (in my lower back) and an ice pack before bed to shut down the nerves. My neck ache/stenosis pain has just started. Possible spondylosis or could it be another form of stenosis. I guess I will have to again monitor and if it gets worse try get my GP to refer me for an MRI. I use panadol advance 500mg x2 as it gets into the system quicker than ordinary, plus ibruprofen

Hope for some warm weather . Hard to accept that there is no cure, for my diagnosis. Just learn to live with it. Good luck once again to everybody. I don't get any replies so I guess I must be using the wrong links within Scope , xx

hedgehoggirl · April 19

hi trytosmile.

I take co-codamol but never know if it helps.I don’t know about others but pain,pins and needles ,weakness change now and then but I’m definitely getting worse. Been told nothing they can do for chronic pain..I’ve been told consultant keeping my case open for a year if I need him.

I walk around the house and still manage some housework but regularly have to sit down. MRI showed cervical spondylosis but I think that’s progressing as I now have pain in shoulder and down arm.fingers don’t work well.

I now have a mobility scooter to get out to shops etc.

I know how you feel about getting low. Took me a long time to come to terms with the fact I just have to live with it.

Must be hard for you being such an active person. Take care

hedgehoggirl · April 19

Sad to say I have found more info online than doctors.It confirmed that fatigue is a big part of LSS.Both mentally and physically. Explains how nerve damage causes weak muscles.

Generalsciatica · April 23

Hello again all those in the Spinal Stenosis Group Chat, with acknowledgements to trytosmile and hedgehoggirl. Welcome aboard!

On the subject of PAIN. We try to shout out about it, but more often than not, our desperate plea lands on deaf ears, even those of the learned Health Professional with whom we are pleading. We go on to think our pains would still be unnoticed, even if we carried a megaphone, as large as a didgeridoo!

The Clinical Director of A&E at a local hospital once told me that the spine is similar to the mast on a ship holding all the sails in place, yet once it becomes damaged, it will never be the same again!

As Spinal Stenosis sufferers, we are all well aware of this chronic pain 24hours/7days a week. Pain is a great leveller and essentially always personal and impacting on the individual. Don't beat yourself up, and don't become isolated.

I would not be here now if I had been able to go to a well-known Swiss Clinic, with the intolerable, excruciating pain symptoms of my lumbar spinal stenosis, eleven years ago in 2015, when my spinal injury occurred. I would have willingly self-administered the lethal injection!

How reassuring it is, we can nowadays talk about, and share our Spinal Stenosis conversation with eachother and with the aim of helping eachother, and if only just one person gets any benefit from this forum, then it is worth it!

So thank you all for each taking the time to add your comments and making a contribution. And thanks to Scope for providing this platform.

Today personally, although the pains are still 24hours/7days a week, there are 'good days and 'bad' days.

Getting to be on top of the pains is important and helps well-being. Learning new ways to manage this condition comes and goes with the territory and a new learning curve of managing is vital too.

I did make a now, cringe-worthy, personal admission about the euthanasia clinic, and which is something I didn't tell my doctor. I am happy to share this with you all in the Spinal Stenosis group chat, especially if you are struggling in pain, alone, afraid, helpless and desperate because the pains won't go away! Get the help-and-support you deserve. Hang in there baby, yes you can!

Generalsciatica X.

hedgehoggirl · May 1

hi Generalsciatica. A good post to read. Sorry that is was so awful for you in 2015.

Good analogy about damaged masts. I’m so tired by the end of the day my legs so weak.

Think the worst thing is not knowing how it will progress. My Doctors are even loathe to give me codeine. As you say you’ve just got to hang on and accept what comes. Next Friday have echo cardiogram to see if my Aortic stenosis is progressing. Oh the joys of old age.
Hedgehoggirl x

trytosmile · May 30

Good afternoon lumber stenosis people. How are you all coping.

I started a post then it disappeared and the screen of my lap top went blank. So I will try again.

I have been re-reading some earlier posts and wish to thank Generalsciatic as you refer to our illness being like a sailing boat mast holding all the sails in place . Excellent description.

Thankyou also to Hedgehoggirl for your kind words of encouragement and the research you did and found a section about Nerve damage causing weak muscles. Definately effecting me now. its also in a good way, to get acknowledgement that it is a symptom and not something new I have to contend with. Oddly mine starts in a morning when I rise , not after along day and ready for bed. If I don't give in , and go for a walk the pain and stiffness stars to break down. But when I get up in a morning I can hardly move the muscles. But I cant stay walking all night !! Ha ha Its tiredness that I cave into. Having more and more sleep.

During May I did have a bit of a break ,or so I thort. I think it may have all just been because I gave in and took a lot of pain killers. I was trying not too.

This last week I have done too much walking . Trying to enjoy this brief rise in sunshine and warmth as today I ache all over. Muscles have disappeared and replaced with wrinkly skin .
laughing , age .

Sorry nothing new this time. I am re-starting the vitamins (c, d , b12 cod liver oil and omega 3) and a shot of bovine collagen ) Not sleeping very well , but I'll work on a solution. Any tips welcome.

Best wishes to everybody. keep up the good work. Trytosmile xx

trytosmile · May 31

hello again How is everybody.

I have had a rough day today. Not so much pain re the nerves but ache all over. My hands and ankles playing up and all over muscle ache. Woke up stiff and cranky. Any one have a pain killer med that is both an anti-inflammatory and a muscle relaxant ? . A bit sad today, Hope you are all soaking up a bit of vitamin D , out of doors with your friends and family. Take care. X

onedayatatime · July 11

I'm sorry it's taken so long for me to reply @trytosmile Had a lot going on and it's been a mixture of highs and lows.

But to answer your question about referral to an APP, in my area it has to be done by my GP, it's then sent to a triage hub where the 'gate keepers' decide.

Unfortunately, my referral for an APP has been rejected and I'm back with a physio again who has given me the standard strength and mobility exercises for the lower back:

lumbar rotation stretch, active pelvic tilt, cat camel, sciatica nerve glide, glute bridge and partial squats.

They are too painful right now for my back and put stress on my damaged hip. I'm hoping to try and redirect the next sessions to focus on things like my posture and walking gait.

I did have the medial branch blocks on the facet joints L2 to L5 and an SI joint injection and am going ahead with RFA on the facet joints. I'm on the waiting list.

I've been discharged from the hip orthopaedic following the injection and sent on my merry way.

With your question about pain medication @trytosmile , I take the anti inflammatory naproxen twice a day along with lanzoprasole to protect the stomach. I've previously been prescribed Baclofen as a muscle relaxant. It did help with the cramping muscles in my calf and foot that I would have of a night that was to do with the L5 nerve compression. I woke one night in pain with my big toe standing completely erect which was very scary. Since I had surgery on that L5 nerve root I haven't had as severe cramping (touch wood). I'm currently waiting on nerve conduction tests due to the muscle wastage in that left shin.

I also take magnesium glycinate as a supplement.

So yeah, pretty busy with all the hospital stuff right now.

I do get a bit overwhelmed with how much of my day is spent just trying to get comfortable and get frustrated with not being able to physically do what I want. But I'm not always this miserable!!

I'd like to ask if anyone has found this extreme heat has effected their symptoms? I've been making sure to stay hydrated and have been using ice packs on my lower back but have personally found an increase in my pain levels.

Take care everyone

Rachel_Scope · July 11

Sorry to hear you're struggling @onedayatatime. Have you spoken to your GP about your increased pain levels?

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