Page 6 | A&e, doctors or wait it out?

autienotnoughty · 2024-11-23T19:53:43+00:00

Off and on back pain for past 15 years. More on in past two years. Symptoms include lower back pain, painful spasms , shooting pains in thighs. Being managed with physio, Pilates, walking and yoga. Last six weeks pain has got significantly worse. I keep experiencing weakness in my legs, periods of not being able to stand/needing support to walk and get up. Today my back has locked three times leaving me unable to walk, getting worse each time. I am now laid flat on my back, I can't sit up. Dh had to drag/walk me to the toilet. I can't walk. I can't turn over. I'm applying heat and cold. I'm also feverish . I have shooting pains/tingling in my legs plus the back pain and spasms. Do I go a&e? Ring doctor Monday? Ride it out?

Cyb3rg4l · 03/12/2024 19:32

autienotnoughty · 03/12/2024 17:50

I got extremely lucky my meds came within 45 minutes ( some people were waiting hours) and there was a transport there. It was horrible and I was in a lot of pain (it also timed badly with when my meds were due) but I know it could have been a lot worse. Transport was painful but again thankfully I'm a ten minute drive from the hospital. I'm in my own bed now and feeling calmer at least.

So happy you are safely home OP and with your medication!

Original poster

autienotnoughty · 03/12/2024 17:50

I got extremely lucky my meds came within 45 minutes ( some people were waiting hours) and there was a transport there. It was horrible and I was in a lot of pain (it also timed badly with when my meds were due) but I know it could have been a lot worse. Transport was painful but again thankfully I'm a ten minute drive from the hospital. I'm in my own bed now and feeling calmer at least.

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TheMerlotPenguin · 03/12/2024 17:48

I’m sorry to hear you’re still suffering. You could request an occupational therapy sssessment to see if aids will help you at home. If you’re unable to manage at home search for the unsafe discharge team for the hospital, hopefully you won’t need them but they tend to respond quickly (only available Monday to Friday in my case!)

Mirabai · 03/12/2024 15:38

Are you in one of those small lounges at the end of a ward? I just lay on the floor after an appendix op waiting for discharge.

DazedAndConfused321 · 03/12/2024 15:36

Do you have anyone to come into hospital with you to advocate for you?

I know your pain, I had 3 discs rupture within a year as a teenager. The trauma from the pain never leaves you, but the pain will. Advocate, research, don't do anything that doesn't feel right.

Original poster

autienotnoughty · 03/12/2024 15:27

@Cyb3rg4l thank you I know you are right it's just hard being in it. So they have discharged me for transport. But I'm basically sat in a chair in the discharge lounge I can't sit for more than 15 minutes I've been told it could be up to two hours. I naively assumed I'd keep my bed until discharge. I'm currently standing/sitting but not sure how long I can stand it.

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Cyb3rg4l · 03/12/2024 15:03

autienotnoughty · 03/12/2024 14:27

@Cyb3rg4l the only information I have been given is that I'm going home .
All I've done in 9 days in hospital is taken meds , got up and practiced walking and sitting of my own doing no direction, no clue what's right.
I've been assessed by physio to sit on a toilet, walk up a step and get off a bed ( all very dependent on my pain level at the time) I've been signed off getting off the bed but at times I can't actually get off the bed due to pain.
So I saw no one (except nurses giving meds and health care assistants) from Friday to Sunday night . I saw a doctor for a few minutes Sunday night who said physio will come tomorrow. I saw Physio for ten minutes today to do stairs. And a doctor for 5 minutes today who's written a sick note and signed release form. Every question I've asked about things I need to be doing, what aids might help, what meds im taking home I don't get an answer because they don't know . And each time it's a different person so I don't have a name to ask for I just get told I don't know ask the doctor or ask the physio. (Depending on which one is talking to me at the time)
I explained my back is still seizing and painful so I don't think I can get into a car. Physio said I could have transport. So I agreed to go home and now the nurse has said I'm probably not a candidate for transport so I have no idea how I will get home.
When I got here it took 45 minutes for two paramedics to get me out the car. And Not much has changed since then so I'm not sure what they think will happen .

I do understand your frustration and distress and it does seem the communications could be better, for sure. However you are allowing your frustration to blind you to the progress you have already made under very difficult circumstances and in the acute phase of your injury. This was always going to be a slow journey, but you are beginning your recovery and are doing well.

And you have received help right? Doctors, nurses, physios ward staff… it may not be a quick or as organised as you would ideally like but it is there and further support will be available on discharge. So it’s not that nothing is being done, or that the support is inappropriate it’s just a bit messy right now. And that messiness is making you more anxious, which is understandable

Once you are home your pattern of care will settle making things easier on the anxiety front and once you are able to relax in familiar surroundings you will probably make better physical progress too.

If you are really worried about how you will manage on discharge you can asked for an assessed discharge where physios accompany you home to make sure you can manage. If you can’t manage even with appropriate aids the discharge will fail and you’ll be immediately returned to the ward.

Original poster

autienotnoughty · 03/12/2024 14:27

@Cyb3rg4l the only information I have been given is that I'm going home .
All I've done in 9 days in hospital is taken meds , got up and practiced walking and sitting of my own doing no direction, no clue what's right.
I've been assessed by physio to sit on a toilet, walk up a step and get off a bed ( all very dependent on my pain level at the time) I've been signed off getting off the bed but at times I can't actually get off the bed due to pain.
So I saw no one (except nurses giving meds and health care assistants) from Friday to Sunday night . I saw a doctor for a few minutes Sunday night who said physio will come tomorrow. I saw Physio for ten minutes today to do stairs. And a doctor for 5 minutes today who's written a sick note and signed release form. Every question I've asked about things I need to be doing, what aids might help, what meds im taking home I don't get an answer because they don't know . And each time it's a different person so I don't have a name to ask for I just get told I don't know ask the doctor or ask the physio. (Depending on which one is talking to me at the time)
I explained my back is still seizing and painful so I don't think I can get into a car. Physio said I could have transport. So I agreed to go home and now the nurse has said I'm probably not a candidate for transport so I have no idea how I will get home.
When I got here it took 45 minutes for two paramedics to get me out the car. And Not much has changed since then so I'm not sure what they think will happen .

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Cyb3rg4l · 03/12/2024 13:19

autienotnoughty · 03/12/2024 12:59

I saw the doctor last night who said physio will decide when I'm ready. Pain had been more manageable yesterday and today although not all the time.
Saw physio today they had me walk upstairs with a walking stick which was ok. They said I can go home, I've got a team called reablement coming to help at home and I've been referred to spinal physio team.
I said I'm fine with going home but not on a car as I don't have the mobility to bend into a car, so I'm getting transport home.
I'm relieved to be going home as I don't feel anyone is helping me here but it's scary to leave at same time.

They are trying to address your pain and have improved your mobility. What is it you feel is not being done, that should be done, to help you?

Theunamedcat · 03/12/2024 13:17

This literally just happened to a friend of mine he was given the injection and exercise route 12 months later he lost sensation in his legs etc and was operated on the disc was enormous there were many many cock ups but hopefully this surgery will fix it

Original poster

autienotnoughty · 03/12/2024 12:59

I saw the doctor last night who said physio will decide when I'm ready. Pain had been more manageable yesterday and today although not all the time.
Saw physio today they had me walk upstairs with a walking stick which was ok. They said I can go home, I've got a team called reablement coming to help at home and I've been referred to spinal physio team.
I said I'm fine with going home but not on a car as I don't have the mobility to bend into a car, so I'm getting transport home.
I'm relieved to be going home as I don't feel anyone is helping me here but it's scary to leave at same time.

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anotherbusybee · 03/12/2024 12:33

autienotnoughty · 02/12/2024 06:09

I will try because I'm on the wrong ward I not convinced I will see anyone relevant.

Show quote history

Hi, @autienotnoughty

Did you get anywhere with the doctors? Are they still expecting that you will just be ready to go home?

Original poster

autienotnoughty · 02/12/2024 09:45

Thank you everyone

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justasking111 · 02/12/2024 07:49

If you have the name of your consultant can you phone his secretary explain what is happening and that you need to see him because they're pushing for a discharge.

Time to push back @autienotnoughty

OhBeAFineGuyKissMe · 02/12/2024 06:48

Try viewing the move as a test run before going home. Now you know that you need to have the meds sorted beforehand and that you are going to go backwards when you do move. But the fact you got better the first time means you will get better again. You will get there but it will be a very frustrating and long road.

Original poster

autienotnoughty · 02/12/2024 06:09

PragmaticIsh · 01/12/2024 23:07

I think it's time to ask the lead doctor on the ward round tomorrow morning what the plan is in regard to treatment, and also follow-up appointments.

I will try because I'm on the wrong ward I not convinced I will see anyone relevant.

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Frolie · 01/12/2024 23:28

Just wanted to say, sorry you’re still
in hospital and having such a rough time. Thinking of you. Really hope things improve for you soon x

PragmaticIsh · 01/12/2024 23:07

I think it's time to ask the lead doctor on the ward round tomorrow morning what the plan is in regard to treatment, and also follow-up appointments.

Original poster

autienotnoughty · 01/12/2024 21:41

I'm seeing physio tomorrow and need to do getting off the bed and and steps with a walking stick so if I'm not better I won't be able to so I assume it will be back to sorting pain meds then trying again. If they really want me out they will send me home in an ambulance and stretcher me upstairs but really hoping that doesn't happen.

I am being referred to a home physio team to get me more mobile once I'm home.

I hadn't seen a ortho doctor in three days though and the doctors on this ward are all gynae!

I feel really vulnerable right now

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anotherbusybee · 01/12/2024 20:39

autienotnoughty · 01/12/2024 20:19

@anotherbusybee I'm still in hospital, been moved off orthopaedics due to lack of beds which isn't great as the ward I'm on is less well equipped for non mobile people.

When they moved me they didn't send meds and the new ward didn't have my pain killer so I ended up having to take something Less effective then take my usual med 15 hours late. I've been in agony all day even after taking my regular medication. Yesterday I walked to the toilet, had a shower and got up for all meals. Today I did the shower ok but after that I have been in bed most of the day and at one point couldn't get out of bed to use a commode so ended up using a nappy.😩 I'm supposed to be going home Monday or Tuesday and I was starting to feel ready but less so today.

Hospital have arranged a toilet support , pillow that raises you up and a handle at side of bed. I've ordered a rising chair. I feel about 100 years old

Really gutted to hear that. I just can't imagine how helpless you must feel right now.

Is it confirmed for discharge or will they hopefully reassess you and see that you are still in need of their help and keep you in?

I'm so sorry this is happening to you.

justasking111 · 01/12/2024 20:26

I'm sorry you've taken a step back. Hopefully a temporary setback.

Mumistiredzzzz · 01/12/2024 20:25

autienotnoughty · 01/12/2024 20:19

@anotherbusybee I'm still in hospital, been moved off orthopaedics due to lack of beds which isn't great as the ward I'm on is less well equipped for non mobile people.

When they moved me they didn't send meds and the new ward didn't have my pain killer so I ended up having to take something Less effective then take my usual med 15 hours late. I've been in agony all day even after taking my regular medication. Yesterday I walked to the toilet, had a shower and got up for all meals. Today I did the shower ok but after that I have been in bed most of the day and at one point couldn't get out of bed to use a commode so ended up using a nappy.😩 I'm supposed to be going home Monday or Tuesday and I was starting to feel ready but less so today.

Hospital have arranged a toilet support , pillow that raises you up and a handle at side of bed. I've ordered a rising chair. I feel about 100 years old

Sounds such a needless set back, 15 hours to get your usual medication 😬 what is their long term plan for you?your care, treatment?

Original poster

autienotnoughty · 01/12/2024 20:19

@anotherbusybee I'm still in hospital, been moved off orthopaedics due to lack of beds which isn't great as the ward I'm on is less well equipped for non mobile people.

When they moved me they didn't send meds and the new ward didn't have my pain killer so I ended up having to take something Less effective then take my usual med 15 hours late. I've been in agony all day even after taking my regular medication. Yesterday I walked to the toilet, had a shower and got up for all meals. Today I did the shower ok but after that I have been in bed most of the day and at one point couldn't get out of bed to use a commode so ended up using a nappy.😩 I'm supposed to be going home Monday or Tuesday and I was starting to feel ready but less so today.

Hospital have arranged a toilet support , pillow that raises you up and a handle at side of bed. I've ordered a rising chair. I feel about 100 years old

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anotherbusybee · 01/12/2024 19:47

autienotnoughty · 29/11/2024 03:12

Thank you for understanding. I've had long term back pain/spasms, I've had a kidney infection, given birth to three children on gas and air, I broke my collar bone.

The pain I've had is so far beyond any of those. I find it frightening I'm on several very strong drugs and I'm still in agony when I start or sit.

I have to keep reminding myself that on Sunday evening I couldn't walk, or even elevate the bed, or communicate much. It's Friday and I can walk ten metres, sit for maybe 15 minutes I can turn on my side with an aid .

Show quote history

How are you feeling? I hope you are starting to see some difference in pain levels.

Could you ask for some home help when you are eventually discharged?

Original poster

autienotnoughty · 29/11/2024 03:12

whathaveiforgotten · 28/11/2024 11:24

I just wanted to say OP that I completely understand the trauma side of this that I think you've tried to explain.

Once you have experienced a certain level of pain that you never have before and never realised you could experience, you feel in shock and then subsequently in disbelief and terror that it might happen again.

I was in a terrible accident and the pain of it meant I was literally begging for someone to kill me to put me out of my misery and at the time I really meant it. I still can't understand how I didn't pass out.

It took me a long time for the trauma of that to soften and fade slightly and for a long time at the smallest pain I would have panic attacks that it would reach that level again.

I just wanted you to know that someone completely understands that feeling.

Thank you for understanding. I've had long term back pain/spasms, I've had a kidney infection, given birth to three children on gas and air, I broke my collar bone.

The pain I've had is so far beyond any of those. I find it frightening I'm on several very strong drugs and I'm still in agony when I start or sit.

I have to keep reminding myself that on Sunday evening I couldn't walk, or even elevate the bed, or communicate much. It's Friday and I can walk ten metres, sit for maybe 15 minutes I can turn on my side with an aid .

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