A&e, doctors or wait it out?

[autienotnoughty]

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?

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

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.

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

Thank you everyone

Hi, @autienotnoughty

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

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.

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

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?

@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.

@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.

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.

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.

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!)

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!

Have they shown you how to get out of bed? Google log roll out of bed if not

Yeah I did that with physio. It's harder on my bed as it's softer but I'm doing ok.

Even when I was leaving the doctor asked how long I thought I might need off work. Nobody has told me what to expect from recovery (I have asked) . I asked what he thought he suggested 2 weeks, I said physio said I would probably need to live upstairs a couple weeks so it's unlikely I will be driving in two weeks. So I suggested 6 weeks. He did it but that includes backdated two weeks I've been in hospital.. I know I can get it renewed with gp if needed but this is why I felt unseen it was like I was having to make sure things happen and advocate for myself. I can't imagine what it would be like if you are alone and confused.

I hope being at home you can get better quality rest and continue to make slow progress. Focus on what you can do not what you can’t at this point. So move every day in what ever way you can every hour. I spent 18mths recovering from the hell of budlging discs but had young toddler kids at the time. The fear of that pain doesn’t fully leave and I used a walking stick for 6 months. I’ve had flare ups twice in the last 15yrs but none as bad as I’ve focused on building a strong core. I found in my first recovery I could hardly walk a few metres but I could cycle on a bike set up well for me. My DH raised the handle bars and angled the seat. A stationary bike then a real one could help in a few weeks time. Pilates to build core strength too. Gentle yoga stretches when you can, to get the back muscles moving out of spasm mode breathing exercises to expand the rib cage as when in pain we tend to hold our breath more. I wish you well it’s not an easy journery but keep hope your get there

I forgot to say I have now used a saddle seat and a sit stand desk at work for many many years because of my back issues. It takes time to adjust using a saddle seat but it’s the only way I could use a desk for 8hrs a day. Plus I use wedge cushions for driving the car and sitting in all other places

Thank you so much

One thing I find I need tena lady. Takes longer to get to the loo and sometimes I leak. So I keep a pack in the bathroom and a spare in the bedroom.

@autienotnoughty

How are you settling in at home?

Ok actually I'm getting out of bed regularly and doing a bit of walking/sitting.. I'm definitely more mobile than I was in hospital and I'm managing to get downstairs.
I can't bend/kneel/ stretch or dress myself. I'm doing some small physio exercises on the bed several times a day. Physio starting in a week .
My pains manageable but I only have a 28 day prescription for my painkillers and I believe I have to reduce them (although no advice has been given) so I'm hoping my pain reduces over time. And I can manage with out them.