Severe back pain - can't get out of bed!

[DuskyMoth]

Recently I've been having occasional lower back pain, I've also been getting lower abdominal pain and the two things seem to be connected. I do have adhesions from numerous C-Sections and so put the pain down to that.

Yesterday morning my back started off a little achy, nothing unusual so just carried on. The pain got progressively worse as the day went on, so I took some co-codomol and ibuprofen which made no difference to the pain at all.

Late evening I was in severe pain. I thought the pain would ease off once I got into bed, so I decided to get an early night and took some naproxen and dihydrocodiene (left over from a wisdom tooth extraction). Lying in bed the pain did not get any better, I was in so much pain I couldn't sleep. I also started to get really bad lower abdominal pain. I finally went to sleep about 4 am.

I woke up at about 10am this morning, I expected the pain would be gone after all that time lying down, but it was worse. I got up to go to the toilet and was in absolute agony. I got straight back into bed and took more painkillers.

I'm still in agony, I just tried to get up again as I thought maybe all the lying down was making the problem worse. I could barely stand the pain is so extreme, it's literally making me cry. My legs feel like they are going to buckle, I could only stand for less than a minute before the pain was to severe and I had to lye down. I couldn't even walk as far as the toilet (luckily I don't need to go).

I also still have really bad lower abdominal pain. Feels a bit like period pain.

I don't know what to do. Painkillers aren't touching it, I can't get out the bed. Has anyone experienced this? If I rest a bit longer will it ease off? Or should I be forcing myself to move? I'm not sure I could even get to a Dr.

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Slim to none I'd say. Even if you're a lot better then, that doesn't sound like the right thing to be throwing yourself into... The bag and walking bit especially. Although perhaps there'd be a way around that?

Sounds like you are starting/going back to University? Have you spoken to them about it?

Yes, going back into third year so it's going to be pretty full on.

I have exactly the same thing
28th June I did it
And I never got my mri until the 26th ish July
That was to confirm I had a herniated disk
Now I'm waiting on nerve root blocker injections- just found out the waiting list is 8months to one year long
I'm in constant agony
Intake so many drugs it's ridiculous
My poor partner is left to do everything for my three young children
I feel useless and awful
And I simple can't not go on like this

I did write a post about it before

I'm also In the north east James Cook hospital x

Op everyone is different. I did mine about 6 weeks ago. I paid (not an option for everyone I know) for a private MRI and follow up appointment with a neurosurgeon/neurologist (advised by gp).

I was told it should start to improve on its own (in my case) and it has. It's not completely better but I can sit for 30 mins then need to get up and stretch etc. I'm also still on gabapentin & naproxen.

The neurologist said that he would see me on the NHS quickly if things weren't improved within 3 months.

My advice would be to get on to your gp to chase things if there's a delay, plus phone the hospital and ask to be put on the cancellation list for appointments. You have my sympathy, not one should be expected to live with this kind of pain, it's barbaric.

Oh lass.

GP. As many (many) times as you need for painkillers. Call the consultants secretary for a cancellation.

I have cauda equina syndrome. If you suspect that is what you have or have any bowel or bladder symptoms you need to go to A&E straight away as they only have a 48 hour window to operate before you are left with permanent damage that is not reversible.

I'm sorry for the abrupt reply op I had to sort the kids out for school. I feel for you so much. It's such a distressing situation to be in and you are given little to no information as to what might help or what will happen from there.
I understand the situation both from having a career in the nhs on the clinical side of things and having lived with both cauda equina and the effects of it for the last 9 years, and every other disc in my back bar 2 being prolapsed.

I'm trying to explain it the way I understand it in a way that makes sense.

So is what you are all saying that although my MRI on Sunday didn't show cauda equina, there is still the potential to develop it?
Yes you have the potential to develop cauda equina syndrome at any point if the disc prolapses further

Medics treat prolapsed discs differently to cauda equina because the cauda equina is a medical emergency that leaves permanent damage so if you develop that then you need urgent surgery ASAP.
However if you have a prolapsed disc, one of three things might happen.
•it might develop into cauda equina (if it helps, the odds may have changed but when I was diagnosed it was close to a one in a million chance so you have good odds on that one but still be vigilant of the signs)
•it might return in time on its own or with exercise to its normal state. I don't know how likely this is but I have been told over and over it is possible.
• it might stay prolapsed, possibly manageable, possibly meaning you are stuck with this pain and the only way to fix it is to operate, which would usually be a routine planned operation with no urgency.

Having had both the cauda equina and the prolapsed discs for a long time, not only do I massively sympathise with your pain op and I'm not underplaying at all that the pain is horrific, but the way they look at prolapsed discs is that there is no paralysis making you unable to move, and because you physically can move, the only thing stopping you is pain, probably sciatic. Which is why they do offer surgery routinely as the pain is so horrific it can really affect your life.

Your physio has told you to lie down which is possibly the worst advice she could give, the longer you stay still with a prolapsed disc the more it ceases up. I'm not saying go mad, but I would keep moving. Use heat if you can more for comfort than anything else. I don't know what level your prolapse is but sometimes I can only get comfortable with one leg straight and one knee tucked up against my chest.

Look into antigravity yoga and Pilates as they both help manage pain. Painkillers will mask it or give side effects but the only thing that will help properly is gettting to know your body and when you can move a little and then let it settle again. I was told don't stay in one position for more than 20 minutes at a time so I try and have a little move around every 20 minutes.

Don't put too much on yourself and I know what I'm saying probably isn't helping at all, I just remember how frustrating it was being in your situation and not understanding why they weren't seeing me, I know it probably doesn't help what I have said but at least it might explain what they are thinking.
Honestly if you lose any sensation or power in your legs, if they go numb, if your bowel or bladder changes, go to A&E. As many times as you need to.

@cactusplant - when you say power in your legs what do you mean - ive been commenting on this thread as I too am currently suffering - ive been told my discs are impacting on cauda equina - already been to a& e and now waiting for op date.

I’m getting increasingly concerned as feel I can’t walk - not so much due to pain just movement of legs - ive also noticed stiffness in top of my spine now too at shoulder blade level and a dull ache _ my pain seems to move around too

I’m seeing Gp tomorrow but not sure if I should be pushing to get op through under a & e as physically just not able to do much and most comfortable lying down

Thank you so much for all the support and advice everyone, it helps knowing I'm not alone.

I went back to the Physio today who confirmed that now I have the pain mostly under control I am best to keep moving (when I first saw her I couldn't move without crying). So she has helped me draw up a plan of action, I'm feeling so much better about this.

My numbness and bladder symptoms have definitely improved, but are not back to normal. I'm still in a lot of pain but actually no where near the level I was at last week.

I've been walking about more today but I keep getting severe shooting pains down my leg which makes my leg give way. The Physio said this was my sciatic nerve. She told me I shouldn't sit for more than 20-30 minutes at a time, so I should ask my Uni lecturers if I can get up and walk about at the back part way through.

Glad to hear Op!

I've just booked with a sports injury clinic! I'm not sure lifting a 25 kg disabled child is a sport but it looks like they may be able to help !
Definitely DX with Sciatica but have had tennis elbow for a while and wonder if it's related? I have a confirmed connective tissue disorder so I'm a little bit easier to diagnose I guess
. I'll let you know x

I’m really disappointed in the nhs, feel that they either panicked me unnecessarily or are giving me a load of bullshit.

My ability to walk has deteriated when this first started I felt as though I could still walk normally although I had acute pain when I moved! I’m not sure how long I had pain in my back for think it is 6 months and what prompted me to go to GP was being unable to bend over and touch my toes In yoga - something I have been doing for 10 years plus.

So this led to the mri scan and the instruction to go to a & e urgently - the outcome of which was to be seen by neurosurgeon in clinic. I did this on 27 July. This date is etched in my mind because I was told out of the 3 options (1 wait and do nothing, 2 have pain relief via injections 3 have surgery) that I needed surgery and this would be within 4 weeks.

I burst into tears at this point - I was not expecting this I thought it would be a case of take some more painkillers and come back in 3 months. I expect this reaction was linked to my breast cancer diagnosis where I thought I was having a second mammogram due to the first being unusable but Infact it was because they had detected something and I needed biopsy there and then - anyway that,s
another story.

As I felt able to walk and that some of the pain had subsided I asked for another MRi scan thinking/ hoping that there had been some improvement. I was told to contact them the day after as depending on this scan they would be making a decision.

The result of this scan was deteriation basically I had got worse in the space of a month! I made the phonecall the next day but was told I could not have been told to call in the next day as results from scans take 2 - 3 weeks. Even the nurse at the scan reminded me to do this as it was obviously I needed my notes. I assumed that as I was already informed that I needed urgent surgery this scan would prompt this happening fairly swiftly. However this appears not to be the case. I was given a 3 month appointment by neurosurgeon and was told this was purely to make sure I did not fall through the system!

So after feeling that I am getting worse - after a noticeable difference in my ability to walk which I can only do very slowly with controlled movement and feeling a sensation of numbness after sitng still for a bit longer than I have normally been able to do and calls direct to the neurosurgery department who are now implying that the appointment at end of October is likely to be the soonest I go back to my Gp Wednesday.

He aggrees that i need to go back to a & e - calls them up and arranges for me to be seen. But as it is before 4pm have to be seen by orthopaedics and not neurosurgery who do a & e after 4pm.

So I have to explain everything all over again I have to try and perform various leg movements for them to assess me. I’m tested ( with a paper clip!!!!) for sensation, I try to explain that although I can do some of the movements the limited range is not normal for me - I do yoga i know my own body. I’m asked why I was not referred to physiotherapy I say it is because I understood i needed urgent surgery and that had I not asked for another mri scan I believe I would have had this by now.

I end up crying again - I’m starting to feel the same old shite that they are not listening to me. So they decide to send me for another mri scan. I have now been sitting around for 4 hours. I am nil by mouth incase they are going to operate. Mri scan is done shows still same as last one but they want to speak with orthopaedic surgeon for a decision who is currently in theatre.

So I’m waiting around pain is getting unbearable I need to lie down but there is nowhere - can’t sit, can’t walk, can’t stand so I’m moving around all over the place and two people ask me if I’m ok as they can obviously see I am struggling, it’s now approaching 5pm and I still have no idea what’s happening. Dr is going off shift - other guy still in surgery - so they take me upstairs to out of hours and Im given a bed in a consulting room. About 6.30 the dr now on shift comes to see me - they are going to review me in their meeting tomorrow - I don’t need urgent urgent surgery as In that night but I may need urgent surgery within a week or two. I now say I was told this 2 months ago and I would have had surgery by now had I not asked for 2nd mri scan. He agrees however I am now being reviewed under orthopaedics and so they will decide. I am still under neurosurgery and so I ask if they will speak to each other - I am told probably. I tell him again how I feel I say about the mri scan again today he tells me the decision is based on my symptoms and not the scan ( what was the point of this then??)! H3 tells me that if I loose bladder/ bowel control to come back to a & e,

I ask again about movement what am I supposed to be doing- he tells me to keep moving and I ask in what capacity - I’ve been told not to lift anything I’ve been told not to twist my back - I tell him I've stopped going to yoga because this involves a lot of back twisting. He says I can’t bend forward ( again yoga) ( incidentally the first dr told me that physio moves are not the same as yoga which I’m not sure about I need to look this up because I seem to recall once before that I had noticed they were pretty much all the same - may be wrong though,) so. I Say I can’t reaaly do much - I can’t lift wet washing, I can’t carry food shopping, I can’t walk the dog, I can’t change the beds, I can’t do ironing or hoovering - I can sit for about 20mins at a time I can’t walk very far but as I Can walk I am ok - I can’t stand still for very long’

By this time I’m getting pretty frustrated I ask them to call me after their meeting! I ask them to speak to neurosurgery both of which he says they will do and he reminds me again to come straight in if I loose any control.

So I have had no phonecall. My understanding of my situation is that as I can currently walk to the toilet when I need to I am not an urgent case for surgery however if I end up pissing or shitting myself then I need to go straight to a & e, in the meantime I can carry on - quite with what I don’t bloody know! I can’t plan anything because I don’t know how I am going to be from one day to the next, I can’t do anything because I can hardly bloody move and if I dose myself up with pain killers so I can move I might scared I could do more harm. I can’t do yoga which has been my sanctuary over the year s but I could have physiotherapy although they have not referred me for this? I’m thinking if I had private insurance ( which I did have prior to my divorce ) I would probably be able to get the surgery done without having to wait.

Meanwhile I am now under two bloody de apartments with slightly different views on this but neither seem so to be in a position to do anything. I currently feel like I am in a situation where when I go blind they will operate on my eyes but by then it will be too bloody late - I am not going to let myself get to the point where i am in nappies and having to use a wheelchair because they decided my situation was not urgent enough. As I was waiting for my scan there was a chap there also waiting - he had had surgery but had numbness in his leg - they were checking him out!

Time to kick some butt I think @cactusplant I understand your frustration - what has helped you the most please?

Green beret that sounds awful. In your shoes I'd contact PALS and tell them all of this. If you were told you needed an urgent operation you should have had it. Make a fuss at the PALS level so both neurology and orthopaedics get involved and are forced to make a suitable plan.

Thanks mitetv that’s just what I need to know - I’ll give them today if still don’t hear I’ll be pursuing this Monday

That sounds awful greenberet. I really hope you get the surgery you need soon!