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Agonising back pain

466 replies

SmileyClare · 06/03/2023 14:11

Any advice?
Ive had niggling lower back pain for several weeks- carried on with life/ work as recommended on the NHS website. I have a very physical job (self employed cleaner).

However at the weekend I tried to get up, felt like my back gave way (?) and couldn’t- the worst pain ever- lower back all down my leg- just horrific.

Im now on Naproxen, pregablin and coccodamol but can barely stand or walk without feeling sick with pain.

please can anyone advise? Is there an ongoing back pain thread on here?
I really need to return to work soon as I’m self employed. And get on with everything at home- two teenagers here.

Just feeling so desperate.

OP posts:
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beforeafter · 27/12/2023 11:31

@justasking111 - yes, that's the one. Just taken one now.

I've just had a call from the hospital and have booked my MRI Scan.

justasking111 · 27/12/2023 11:52

Wonderful news. The sooner you get that done then they can put a plan in place for you.

justasking111 · 27/12/2023 11:54

There's a written report with an MRI I asked for a copy. Very useful for the physiotherapist.

Oblomov23 · 24/01/2024 12:45

Hi, I'm back again. A year later.
Anyone with any sensible advice, I'd appreciate.

I'm getting nowhere and not sure what to do next.

Sorry, if this is higglety piggletytea, I'll just say as I remember it.

So I fell over in February 23, so it's nearly a year now. I hurt my back very badly even though I only fell about 30 cm and the NHS has severely failed me.

Eventually I went for an x-ray then a CT scan, did what I was told to do. MSK list my referral, lost my notes, said they said they didn't know what to do with me. Great.

MSK said refer me to physio. I phoned up and said I've got nothing against physio but I've been told I need an MRI so I'm not sure that physio is the right place for me right now.

This later came back to haunt me because 3 times in my notes it keeps saying I refused and refuse physio, but never said anything of the sort.

eventually saw MSK who ordered an MRI. He was an ACP and his then his boss was a physio, they lost my notes again. Neither are a doctor. I haven't actually been seen by a doctor at this point.

Ironically, because he was a physio, he never actually referred me for physio saying you've refused physio to which I told him I'd never said anything of the sort. He said he didn't understand why I was on all the painkillers that I was only to take paracetamol and he was referring me to Osteoporosis.

A few weeks later, after making my complaint to Pals , I get a letter saying I'm discharged by MSK.

So I see Osteoporosis, they give me some tablets, I have another bone density scan. He gives me an annual infusion and I'm discharged saying that I will have another infusion every year for the next three years and I can come back and see him if I choose.

I'm now under no one.

Everything was just a disaster, a sham.

Meanwhile, I had at the beginning seen everyone privately : physio, osteopath, chiropractor.

I made a complaint to Pals and in return they said that I had harassed 6 members of staff. The ACP, who I saw twice, his boss the physio, and 4 members of staff on the phone.

now I'm fighting that allegation with Pals not just to get treated, but it's a secondary issue of being accused of harassment. Now as all of you will know you don't want harassment on your NHS record, harassment is actually a crime, is a protected characteristic. anyone who reads it would assume that I'd said something terrible about someone's race or sexual orientation, which of course I haven't. I never shouted. I never raised my voice. I phoned up again and again and again, this is what they don't like, and I said : I can't believe that someone's lost my notes, and I can't believe they've lost the referral, and then I said I'm very sorry but I'm not happy with this : you can't just leave me telling me to take paracetamol, then discharge me. Perfectly polite. But apparently thus counts as harassment?

so I'm fighting that.

My GP who was about to retire. Sent me to a different hospital, unfortunately he was a surgeon and he was baffled as to why I had been sent to see him. He said I won't operate, just give it time.

He said you've broken your back in 4 places. L5, L4 L2 and L1. I joked , what's wrong with L3, why's he being bullied and not invited to the party?

He said some of the fractures look old, I want to know why they not healing, is it because you're a diabetic since birth And they don't heal very well?

I asked him, why am I in so much pain, 9 months on. I told him, people who I see see now privately, as soon as they touch me all my muscles are clamped up, tight. Why though?

He suggested an MRI for January 24 to check 4 fractures had healed. so this is arranged for next week.

The local Hospital even though another surgeon had ordered this mri tried to block it and refused it. Eventually pals got it processed.

they've blocked everything it feels like, I'm being bullied? they want to punish me ? I have been dismissed and discharged from the local hospital and they said no we've done nothing wrong.

They insist that We did actually refer you to Osteoporosis. Osteoporosis, first Doctor I'd seen, gave me some tablets and then an infusion and then he discharged me so I'm under no one.

but the local Hospital still maintains They did what they did and they did refer me onto somebody else. but my GP says no, he wasn't wasn't happy, that he wouldn't be happy with that, because whilst they did actually refer me to Osteoporosis, MSK didn't deal with the core issue, which is their responsibility.

Osteoporosis isn't actually supposed to deal with the pain. and I am still in terrible pain a year later. So who is in charge of that part?

so I'm waiting for this MRI at the local hospital, but they I don't trust them anymore. They missed the 4 breaks before, so how will I know if they do look at the MRI next week properly?
Surgeon said that they only would've spotted the 4 if they really looked carefully and tilted the angle of the MRI, which they clearly didn't do because they didn't spot that I had four breaks so when I go for my MRI next week, I don't trust them to do their job properly or to look properly because they didn't do their job properly last time.

and I just feel dismissed by everybody. and I'm still in terrible pain.

I'm now on paracetamol, tramadol , gabapentin and morphine. I'm constantly constipated. I'm suppose. Im supposed to stay on this for the next 30 years?

My blood sugars are high and have been for nearly a year. BRT my diabetic consultant will be pleased. Because presumably I'm under stress, my body is still in reactive , muscles tight. Presumably I might still have infection?

or is there something else wrong with me? Eg a trapped nerve or something wrong, that no one has even considered yet?

I've now got shooting pains all the way through my back, another one up my left shoulder blade up my neck and out of my ear which is very odd. My knees are hurting, my hips are hurting. No one is even bothered to look at my posture or how this has now affected the rest of my body and more damages being done to my body generally, because no one has addressed the root cause.

I'm stooped and I've lost 3 inches in height and because I was always very tiny I'm now nearly 4-11, having been previously only been 5-2, before so I'm practically classed as a midget. Fab! and I'm now overweight because I can't exercise. I can't walk to the car, let alone do any exercise. so what exercises exactly are they expecting me to do?

And I do all the physical exercises that my private physio and NHS physio have given me, but they make no difference, and I'm no better off, and I'm not even living properly at the moment.

and I'm not getting any better and everybody who sees me is shocked by how Tense all my muscles are. and I have actually since arranged by myself been to nhs physio had a full water sessions and then was discharged.

I just feel once you do all the conservative corrections, what happens then?
Surely they should then move onto doing steroid injections into the four bones. Also they could then go in and fill each joint with fins, to puff it back out, but apparently this isn't done on the nhs. they know that I've got Osteoporosis and all my Bones have collapsed, are they absolutely sure that they haven't missed something else? I mean why am I in this much discomfort a year later??

In desperation, I did most of the things privately because I was waiting such a long time to get my MSK appointment on nhs. I've spent thousands. I've got nowhere and yes I'm better than I was but I'm nowhere near right, and no one seems to even care.

At first in February, when I did fall over, I was in so much pain I couldn't roll over in bed. I couldn't get up out the chair. It's like all my core muscles just completely disappeared. I'm better now, but nowhere near right.

From the MRI, they says fractured L5. They says they could see an old fracture L1.

Osteoporosis before he referred me, said this patient has lumber facet joint degenerative joint disease .

And I just can't grasp why they would leave someone in this bad way, why are they not bothered by what the root causes? why are they not bothered by solving the core problem. they're just gonna leave me on these four painkillers, what for the rest of my life, I'm 50, I could live to 80 I'm supposed to live, like this?

I can't walk. I can't walk for more than about 50 m. I get up I walk to my car I go to work, I come home again. I get into bed.

The Osteoporosis nurses at the Osteoporosis Society who I rang she almost laughed and when I told her that they only recommended that I take paracetamol, and she said well, clearly he's never broken a bone and she said he was really dismissive.

Not only did local hospital block initially request for a 2nd MRI from other hospital surgeon. But also also blocked my chronic pain referral. both my GP and the NHS physio recommended. I got referred to chronic pain, was rejected and then I phoned up to ask if it could be made urgent, they refused. I said to the Pals lady it feels like I'm being blocked deliberately. I don't want to use this word but it's almost like I'm being bullied in the end.

Upon your advice, from this thread, right at the start, I had spoken to my MP, ICB, pals complaints and Surrey complaints. at the very beginning of this as advised. I spoke again to my MP last month, he is actually a doctor. he said he thought that he should take this further and he could get me appointment with the medical Director and the top chief Medical exec. but I fear doing this because I've already been labelled as a difficult patient. I've got a harassment allegation against me. Won't this just make it worse. I'll be labelled forever.

I'm waiting for a response from Pals about that next week.

The Osteoporosis nurse said that this is not unusual for someone to be able to get up in the morning. and then are throughout the day even though I do do physio exercises. It has no effect and by about 3 o'clock in the afternoon. I'm in such a state even with painkillers I come home I get into bed. I can't do any ironing I can't do any cooking, I can't go shopping, I can't carry anything. I can't hoover, I get into bed, I come down for my dinner, then I get back into bed. Is this what you call living? how is that ok? is this what you call quality of life?

I was 50, you know I'm not the fittest person could do a losing a stone but you know before I fell over I was fine, I used to go for walks and do things and I can't accept that this is how I'm supposed to live for the rest of my life.

and I can't accept the people are so dismissive of this. Duty of care? Money? Just get rid of her and give her some paracetamol?

and I go round and round and round in circles. I just don't get anywhere and I just don't know what to do next.

justasking111 · 24/01/2024 13:36

@Oblomov23 you have osteoporosis, your spine is contracting causing you agony. There is no cure, just delaying tactics with osteo drugs. I'm so sorry. Queen Camilla is heavily involved with the osteoporosis society. It's time to talk to them.

I've had personal family experience. I can't help you any further.

Oblomov23 · 24/01/2024 13:52

@justasking111

Actually I disagree.

I have watched all the osteoporosis Society videos, and spoken to their nurses, twice. The videos are very clear. Osteoporosis drugs, try and help the bones themselves so that the further fractures do not occur. They do not help with the pain and the videos clearly state that if you are in pain you need to go back to your GP. not the Osteoporosis department, but your GP, to help with pain management.

my GP has already got me on 4 painkillers and my referral to MSK Chronic pain department has been initially refused, but is now awaiting, a 6 month wait. so that will be 18 months since I fell.

Agonising back pain
Oblomov23 · 24/01/2024 13:58

Osteoporosis is PAINLESS.

Why am I in so much pain with osteoporosis?

Osteoporosis is not usually painful until a bone is broken, but broken bones in the spine are a common cause of long-term pain. Although a broken bone is often the first sign of osteoporosis, some older people develop the characteristic stooped (bent forward) posture.

justasking111 · 24/01/2024 13:58

@Oblomov23 you are already on four painkillers do you wish to add more?

Oblomov23 · 24/01/2024 14:33

What more, which one?
Plus no, I don't want to just deal with the effect, take pain killers for the pain, I want to address the cause, so I'm not in so much pain. I don't want to live like this, long term.

justasking111 · 24/01/2024 15:50

The only way I can reduce my pain is physiotherapy. I pay £40 per session. Then do exercises twice a day at least

Oblomov24 · 02/03/2024 19:18

I've got an appointment with chronic pain dept this month, and an ongoing complaint with pals. Getting nowhere really.

Oblomov24 · 21/03/2024 19:34

My appointment with chronic pain clinic was awful. He said there's practically nothing to be done. I have osteoporosis. And lumbar facet joint degenerative joint disease. I broke my back in 4 places: L5, L4, L2, L1. Jan 24 MRI says they are 'healing' not yet healed.

He told me today that he wants me to stop the pain medication : paracetamol, tramadol, gabapentin, morphine. Because it isn't working.

I think he thinks I need to divert my attention, use mindfulness to ignore.

I felt like telling him where to shove it.

I feel so lost. No answers, no root cause, no answers. I'm told I have to accept this. Live in pain. I fell in Feb 24. I'm now 50. Live like this forever? I don't want to.

By 3pm I'm in bed. I can't cook, hoover, iron, shop, can't walk more than 30m. I'm so miserable.

justasking111 · 21/03/2024 21:08

@Oblomov24 is he mad. You can't mindfulness that kind of pain away.

justasking111 · 21/03/2024 21:10

@peeeter physiotherapy does help me to a certain extent but can't fix bones unfortunately.

Oblomov24 · 21/03/2024 21:44

I've been to 3 physios already. 2 privately. 1 nhs. All made minimal difference.

Oblomov24 · 21/03/2024 21:45

Sorry, I fell in Feb 23. Over a year ago.

Mxflamingnoravera · 26/03/2024 20:01

@Oblomov24 I god I feel your pain, I saw my surgeon today. I left still in in pain yet another scan arranged, blood taken, scans reviewed. Degenerative disease diagnosed, no acknowledgment of me saying I live on painkillers and laxatives . But thank god I didn't get told to mindfulness it away, I might have punched him.
I was in tears I was so grateful to get z fucking appointment, I left in tears because there is still no plan.
To top it all I've developed tennis elbow in both arms from the swimming which lifts my soul and ironically, I can do mindfully.
In on the sofa here with my bag of gabapentin thinking of you. X

Mxflamingnoravera · 26/03/2024 20:07

Omg, I should have read further back. What a fecking mess they've made of your care. I thought mine was a bit crap, but to have pals turn your complaint into a harassment issue against them is mad.

I'm going to read much further back now.

Oblomov24 · 26/03/2024 20:31

Today I finally got my 9 page pal's response.

When you read it, it all sounds so reasonable. If someone gave it to me, I'd wonder 'what on earth is that woman complaining about'?

I could cry.
Eg: They said, we recommend a back brace. That's funny because no one had ever mentioned one before, apart from me in my pals complaint, in the last 18 months. And at my chronic pain appointment last week, when I asked, he said no to a back brace.

Oblomov24 · 25/07/2024 13:43

I went to pain clinic today. I feel dismissed by imsk, the back dept. They just referred me to pain clinic, to teach me how to deal with the pain. It's been 2 years now. I had planned to take dh with me as a witness, but took ds. I think its good to have someone with you. He spoke well for me.

Doctor agreed to have my case re-reviewed. And to chase physio. And to put me forward for pain management course. I don't feel mindfullness is right for me. I want to address the root cause, rather than learn mindfullness to overcome the pain.

Oblomov23 · 11/10/2024 12:59

So, my back pain story continues. It's been 21 months since I fell in Feb 23. 4 fractures, that they missed. Dismissed and then discharged from msk. In pain management clinic now. Mindfullness. No addressing the root cause.
I was on the phone yet again to pals, for 55 minutes yesterday. They wont let me complain to leadership, they wont let me be seen again. They suggested to try another hospital and complain to ombusman. today i cried about it. so fed up.

justasking111 · 11/10/2024 13:26

I'm so sorry @Oblomov23 . I've just got my blue badge, now have a walking stick. GP said well no painkillers don't work. Lose two stone that will help. That'll be the two stone I put on when my mobility crashed.

Like you I could cry.

Oblomov23 · 11/10/2024 14:33

Same thing @justasking111 .
Told my problem was that my anger re how badly my whole case was handled is inhibiting my mindfullness. Told to lose weight, I've been the same weight for 30years, until I fell and couldn't walk.

Words · 11/10/2024 17:15

What the actual? Was that an nhs run clinic ?

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