u/Alert-Smile-1783

Hey everyone! I'm u/Alert-Smile-1783, a founding moderator of r/kyphosisfromfractures.
This is our new home for all things related to Kyphosis caused directly by fractures not genetics.We're excited to have you join us!

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Post anything that you think the community would find interesting, helpful, or inspiring. Feel free to share your thoughts, photos, or questions about living with a fracture caused kyphosis. It’s impact on your life and any coping tips you have.

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Thanks for being part of the very first wave. Together, let's make r/kyphosisfromfractures amazing.

As the title says I had 7 spine fractures T7 to L1. I lost height and have kyphosis and scoliosis. I’ve had pain on my right at one pinch point whenever I stand, walk or do jobs. It’s been 9 years. I’m 64 and it’s getting worse as I got a sacrum sit bone pain which prevented me sitting to relieve my back for 16 months.
In the past I had injections then ablations to no effect. Use heat basic pain meds medicinal cannabis but really only lying or sitting relieves the spasm which I assume pinches a nerve. But can an SCS help if pain goes on resting?

I live wheel the roads are pit goles. bumps, hills narrow winding roads. Basically being in a car is awful with modern hard seats too. Terrible back issues. I need the car that cab smooth the ride as much as possible.

EDIT I mean an ordinary family car. I mean years ago we had a Citroen C5 it was lovely with really soft seats. Stuck with a Kuga now with rock seats.

I’m pretty sure I have it, lots of research my sports physio and feldenkrais trainer.
I’m not asking for advice because my situation is complex because I also have spine fractures and thus kyphosis scoliosis blah blah.
But I’d just like more information. I’m
UK and here we need to diagnose ourselves first lol

Female 64. Previous vertebral fractures 7, 9 years ago they left me with severe kyphosis and scoliosis to the right but I coped with pain in one small area on standing.
A fall on rocks in 2024 onto my right hip seemed to shift my pelvic floor causing dysfunction. I’ve solved the pelvic floor issues and feel balanced there now.
Early 2025 I suffered a breakdown through grief and massive weight loss.
I foolishly started stair climbing thinking it was a good idea.
Suddenly one morning I sat on my bed and something spasmed so hard it sucked my fat near butt crack in. That spasm lasted 8 months then released, the fat is out now. My entire buttock was full of nerve pain. My sit bones and sacrum stung and my sacrum stung. But standing and walking was painless.
It still is. Each morning it’s gone and builds through the day with sitting. I can sit now but my sit bone and a small sacral area sting in sitting.
I was told piriformis, sacroiliatis, hamstring neuropathy and ischeal bursitis.
No imaging because I can’t lie flat for MRI and nearest standing MRI means a long long drive and I can’t sit that long still.
My latest thought is cluneal nerve entrapment because of my spine shape and lack of lordosis now. I’ve researched cluneal nerve online in medical journals and it fits. But what now?
I’ve lost my life to this mystery. I’m UK but I can pay but I’m not even near good resources. I’m trying to conservatively help myself ice, ibuprofen , pelvic tilts, looking at posture carefully.
The mystery is it literally is only with sitting on 2 places. They sting. But the sacrum had a sickening sensation if I lie in my back.
Sometimes sitting it extends to sore thigh.
I was used to pain in random places forever but this is intolerable and ruined my life.
I can’t sit to read, craft or see family because I can’t be in the car long.
Thanks for reading I’m so damn miserable.
BTW I have bought 10 different cushions but nothing helps both areas plus I’m very small too.

Female 64. Previous vertebral fractures 7, 9 years ago they left me with severe kyphosis and scoliosis to the right but I coped with pain in one small area on standing.
A fall on rocks in 2024 onto my right hip seemed to shift my pelvic floor causing dysfunction. I’ve solved the pelvic floor issues and feel balanced there now.
Early 2025 I suffered a breakdown through grief and massive weight loss.
I foolishly started stair climbing thinking it was a good idea.
Suddenly one morning I sat on my bed and something spasmed so hard it sucked my fat near butt crack in. That spasm lasted 8 months then released, the fat is out now. My entire buttock was full of nerve pain. My sit bones and sacrum stung and my sacrum stung. But standing and walking was painless.
It still is. Each morning it’s gone and builds through the day with sitting. I can sit now but my sit bone and a small sacral area sting in sitting.
I was told piriformis, sacroiliatis, hamstring neuropathy and ischeal bursitis.
No imaging because I can’t lie flat for MRI and nearest standing MRI means a long long drive and I can’t sit that long still.
My latest thought is cluneal nerve entrapment because of my spine shape and lack of lordosis now.
I’ve lost my life to this mystery. I’m UK but I can pay but I’m not even near good resources. I’m trying to conservatively help myself ice, ibuprofen , pelvic tilts, looking at posture carefully.
The mystery is it literally is only with sitting on 2 places. They sting. But the sacrum had a sickening sensation if I lie in my back.
Sometimes sitting it extends to sore thigh.
AI agrees (yes I know) that cluneal sounds logical.
Thanks for reading I’m so damn miserable.
BTW I have bought 10 different cushions but nothing helps both areas plus I’m very small too.

Female 64. Previous vertebral fractures 7, 9 years ago they left me with severe kyphosis and scoliosis to the right but I coped with pain in one small area on standing.
A fall on rocks in 2024 onto my right hip seemed to shift my pelvic floor causing dysfunction. I’ve solved the pelvic floor issues and feel balanced there now.
Early 2025 I suffered a breakdown through grief and massive weight loss.
I foolishly started stair climbing thinking it was a good idea.
Suddenly one morning I sat on my bed and something spasmed so hard it sucked my fat near butt crack in. That spasm lasted 8 months then released, the fat is out now. My entire buttock was full of nerve pain. My sit bones and sacrum stung and my sacrum stung. But standing and walking was painless.
It still is. Each morning it’s gone and builds through the day with sitting. I can sit now but my sit bone and a small sacral area sting in sitting.
I was told piriformis, sacroiliatis, hamstring neuropathy and ischeal bursitis.
No imaging because I can’t lie flat for MRI and nearest standing MRI means a long long drive and I can’t sit that long still.
My latest thought is cluneal nerve entrapment because of my spine shape and lack of lordosis now.
I’ve lost my life to this mystery. I’m UK but I can pay but I’m not even near good resources. I’m trying to conservatively help myself ice, ibuprofen , pelvic tilts, looking at posture carefully.
The mystery is it literally is only with sitting on 2 places. They sting. But the sacrum had a sickening sensation if I lie in my back.
Sometimes sitting it extends to sore thigh.
AI agrees (yes I know) that cluneal sounds logical.
Thanks for reading I’m so damn miserable.
BTW I have bought 10 different cushions but nothing helps both areas plus I’m very small too.

It seems to me that rationing it is cruel and doesn’t take into account each persons needs.
It’s side effect free unlike gaba or preg.
My feeling is big pharma push their miracle cures giving back handers.
My age is 64. My psychologist says it should be personal choice at my age what I choose to do.
I hate our nhs

Female 64. Previous vertebral fractures 7, 9 years ago they left me with severe kyphosis and scoliosis to the right but I coped with pain in one small area on standing.
A fall on rocks in 2024 onto my right hip seemed to shift my pelvic floor causing dysfunction. I’ve solved the pelvic floor issues and feel balanced there now.
Early 2025 I suffered a breakdown through grief and massive weight loss.
I foolishly started stair climbing thinking it was a good idea.
Suddenly one morning I sat on my bed and something spasmed so hard it sucked my fat near butt crack in. That spasm lasted 8 months then released, the fat is out now. My entire buttock was full of nerve pain. My sit bones and sacrum stung and my sacrum stung. But standing and walking was painless.
It still is. Each morning it’s gone and builds through the day with sitting. I can sit now but my sit bone and a small sacral area sting in sitting.
I was told piriformis, sacroiliatis, hamstring neuropathy and ischeal bursitis.
No imaging because I can’t lie flat for MRI and nearest standing MRI means a long long drive and I can’t sit that long still.
My latest thought is cluneal nerve entrapment because of my spine shape and lack of lordosis now.
I’ve lost my life to this mystery. I’m UK but I can pay but I’m not even near good resources. I’m trying to conservatively help myself ice, ibuprofen , pelvic tilts, looking at posture carefully.
The mystery is it literally is only with sitting on 2 places. They sting. But the sacrum had a sickening sensation if I lie in my back.
Sometimes sitting it extends to sore thigh.
AI agrees (yes I know) that cluneal sounds logical.
Thanks for reading I’m so damn miserable.
BTW I have bought 10 different cushions but nothing helps both areas plus I’m very small too.

I have a lot going on with my pelvic floor dysfunction.

But my most anxiety provoking symptom is a sensation of needing to open bowel or like stool is in sphincter when I stand still.

Only when I stand. I simply cannot figure out if it’s tightening or pelvic floor dropping.

Any PFT’s got a possible answer.

They were grade 1 over a year ago. I’m uk so can’t get to see anybody. I can pass stool and pee. But struggling with pelvic floor heaviness when standing ie feeling like I need a poo even if it gas. I have hEDS and am 64. I just wonder if a pessary would help the sensation? I’d want to remove it daily too so that’s a complication.