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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To not be able to put up with this pain

97 replies

MaintainTheMolehill · 02/10/2019 13:40

Hi sorry I'm getting desperate and losing my perspective so need some advice.
For almost 8 weeks I've suffered with lower back pain. I woke up one morning and it was there. It would last a couple of hours in the morning then twinges through the day then worse again at night. I went to the doctor who checked I could feel my legs and there was no numbness so prescribed 30/500 co codemal, naproxen and a low dose of diazempam.
I thought it had gone last week then on Monday morning this week when I woke I could barely walk. I went to the out of hours as it was a holiday here and the doctor there got the nurse to give me an injection in my bottom of what I think was dihydrocodeine (I was in too much pain to listen properly).
Nothing has helped and I'm struggling to cope but don't want to bother them again.

It feels like there is a heavy weight pushing me down and that all my internal organs are dragging down. Every step I take feels like my hips are going to snap.

Currently in tears at the thought of trying to get my shoes on to go and do the school run and the thought of the walk (a 10 minute walk now takes me 40 minutes of agony)

Is this normal with back pain? Is it just a case of riding it out? The only investigation they have carried out were urine samples and I've had the feeling that they don't understand why I am bothering them. AIBU?

OP posts:
Dontsayyouloveme · 04/10/2019 08:08

When you call the GP you MUST tell them about the incontinence! They will soon get you seen!

OnlyTheTitOfTheIceberg · 04/10/2019 09:53

OP, this is on the NHS's website:

"Cauda equina syndrome requires emergency hospital admission and emergency surgery, because the longer it goes untreated, the greater the chance it will lead to permanent paralysis and incontinence."

If you are not taken seriously by the GP please go to A&E and explain you are worried you have the symptoms of cauda equina syndrome including urinary incontinence. This is exactly the sort of thing A&E is there to treat!

Dodie66 · 04/10/2019 10:12

Like the previous poster I think this is an emergency. Please go. To A&E loss of bladder control can be serious

Wolfiefan · 04/10/2019 10:31

You need to get to a and e. GP can’t do the scans that would rule out Cauda Equina. If it is that (rare but a possibility) you can end up with permanent damage if you don’t get diagnosis and treatment ASAP.

YesQueen · 04/10/2019 11:34

A&E is 100% appropriate
If you have cauda equina you will be paralysed without early intervention

Original poster
MaintainTheMolehill · 04/10/2019 18:28

I saw a different GP who had experience in Orthopaedics and had referred me to the ortho consultant so just waiting on him at the hospital.

OP posts:
Wolfiefan · 04/10/2019 18:54

If you still have continence issues it’s not a wait for a consultant situation. It’s an a and e tonight situation.

Original poster
MaintainTheMolehill · 04/10/2019 18:56

I'm waiting in a&e for the consultant.

OP posts:
Wolfiefan · 04/10/2019 18:59

Fantastic! I thought it was a referral that might take a couple of weeks. Hopefully they can rule out the cauda equina and get you some awesome pain relief and a longer term plan to sort it out for good.

smileylottie87 · 04/10/2019 19:34

Well done OP, that's great news. I hope you get seen quickly and get on the road to recovery

peachgreen · 04/10/2019 19:38

Glad you're at A&E OP, best place for you right now. Hope you're seen soon.

CottonSock · 04/10/2019 19:48

Good luck op. It sounds horrible and you have been very patient

YesQueen · 04/10/2019 20:56

Well done (if they offer you an ortho or neuro choice, take neuro)
I had severe sciatica which progressed down my leg, then went numb and at the end I was dragging one foot as it was easier than lifting it. I had two MRI scans which showed a giant herniated disc. Waiting for the op, I was lay in bed one night and had a very subtle sensation of water running down my legs. Went to a&e and said I think I have cauda equina. Back in the MRI, they told me they were going waking my neurosurgeon up and I was operated on
I have some nerve damage but I was very very lucky

smileylottie87 · 04/10/2019 22:31

@YesQueen genuinely curious, just wondering if you may please explain why you advise neuro instead of ortho? I'm seeing an extended scope practitioner soon so would like to be a little clued up when they are discussing options

YesQueen · 04/10/2019 22:48

@smileylottie87 personal experience. I've had two friends with CE who have been I can only describe as butchered by ortho. Ortho for bones, neuro for nerves and neuro tend to see more spinal procedures. It's subjective but my herniation was so big and crushing my nerves and spinal cord that the nerves needed v delicate involvement
Also ortho wouldn't touch me Grin after they saw the MRI they ran away they went and found neuro
One of my friends had a horrific time with ortho at the same hospital I was at and made me promise I wouldn't let them touch me (she had to pull a giant blood clot out her own back, has a lot of scarring, incontinence, nerve damage and nobody listened when she said she had CE)

smileylottie87 · 04/10/2019 23:51

@YesQueen thank you so much, that really helps and makes lots of sense. Thankfully no signs of CE but just am sick and fucking tired of pain and the slow process, I can't even stand up properly anymore and being self employed is cranking the pressure right up. I would just like to get this process really moving after so many months and to get it right.

Sorry I didn't meant to derail, just wanted to grab the opportunity for some first hand advice.

My thoughts are with you @MaintainTheMolehill and I hope you update us with some positive news when you feel able to Thanks

Original poster
MaintainTheMolehill · 05/10/2019 00:38

Thanks for the advice. I'm still really no further forward. They did a scan on my bladder, bloods, checked my legs and back passage which was all fine but are now waiting on the word from the neurosurgeon about if I have to travel to the nearest city hospital for an MRI tonight or if I can go home and come back here for one on Monday as they only do them Monday to Friday.

OP posts:
savingshoes · 05/10/2019 00:56

If lower back pain with NEW numbness, pins and needles or incontinence then you go to A&E not GP.

smileylottie87 · 05/10/2019 01:22

That's great news that tour scans so far are ok and although you're waiting on the neurosurgeon they're actually looking at you and taking notice which is for the best. Good luck if you need the MRI tonight but if not then take it as easy as you can and at least you will be prioritised for Monday and get a recovery plan from there. The main thing is you're on the right path to getting this sorted and hopefully being pain free soon

EmilyBishopmyconfession · 05/10/2019 04:59

You must keep pushing for an MRI- time is crucial if it is Cauda Equina and waiting til Monday could make all the difference. Is there anyone with you who could fight your corner for you if you're in too much pain?

I know several people who have had it and been fobbed off even with red flag symptoms- one has successfully sued the NHS and the others are all in the process of doing so. If it is CES it can be life-changing.

Fingers crossed it is something less serious, but you really must have a scan, even if just to rule it out.

Doormat247 · 05/10/2019 05:36

I feel for you OP as I'm going through similar. I've suffered for 26 years (and I'm only 35 so can only foresee a life of agony).
It sounds like you've actually managed to get a fair bit from GP etc - it infuriates me how they can just leave people in pain and find it acceptable that someone can't walk.

I've lost count of how many times I've been told to just wait it out and it will go away. I ended up in a&e a few weeks ago and finally got an mri - it's a slipped disc which is now nipping my sciatic nerve. The only reason I got scanned was because they thought it was cauda equina due to the paralysis in my legs.
Once they determined it was the slipped disc I was told it will sort itself out. I'm now on my 3rd week of excruciating pain and still unable to walk/work/leave the house. I was told that if I still can't walk in 3 months then they'll review it and look into surgery (there's then an 18wk waiting list plus they wouldn't want to do the surgery on me as I'm currently pregnant). I'm also not allowed pain relief in case it harms the baby.

I feel that this is a condition where people are just left in agony with no way of dealing with it or being able to get on with life. I was told by the consultant who reviewed the mri that most people over 30 have a slipped disc and that's just life. It's just bad luck that my disc is touching things that cause these other issues. I'm also suffering from pgp/spd and he'd never heard of it, so that was helpful Hmm.

The dragging pain you mentioned, I have previously suffered from and it's awful. That was usually when I knew I was going to end up in a&e but it did right itself in the end. I have my fingers crossed for you OP and hope they actually do something for you this time.

Doormat247 · 05/10/2019 05:41

Sorry, forgot to mention that if you end up waiting for an mri, prepare for a very long wait.
I was blue-lighted to the city hospital for an emergency mri at 1AM yet didn't get seen until 2.30PM!! They kept me nil by mouth for 24hrs and wouldn't even let me sip water - it was hell. They also refused me painkillers too.

If you can go home and return for an mri I'd advise you do that unless the hospital staff are much kinder than mine were.

CupoTeap · 05/10/2019 06:39

So glad to hear you are being properly looked after now op.

YesQueen · 05/10/2019 07:34

@Doormat247 very much so. Unfortunately my cousin age 33 died this year because he accidentally took too many painkillers trying to get relief and was refused an MRI on his back. I was so lucky - I had a physio who sent me for an MRI because she was so concerned
I couldn't walk and I was grey and pacing with the pain. Turned out it was a 15mm herniation, I asked the surgeon if it would fix itself and he laughed and said "not a hope in hell"

Doormat247 · 05/10/2019 07:46

@YesQueen