Is there any further help after NHS physio? Back pain, prolapsed disc

[BlueEyesUltimateDragon]

I had an incident in Nov 2020 and again in April 2021 where I suddenly and very painfully found myself unable to walk for several weeks each time. I went private because NHS were unwilling to do anything other than prescribe painkillers and discovered prolapsed L5/S1 disk with dessication and impinging on left S nerve and was told to go back to NHS physio and all would be well.

I've been seeing my NHS physio since July 2021 and we just do not get along. He said my private MRI wouldn't be accepted by NHS and I'd need another one, which I'm not eligible for. I don't think he takes me seriously and isn't listening to me. I ended up with nerve pain (originally sciatic but now shoots down the front of my shin which physio can't/won't name) and intermittently I get bouts of terrible back pain again in the SI joint region which my physio persists in telling me is totally normal and not to worry - a difficult thing not to do when I have had 2 experiences of the most horrific pain I've experienced and have not had a truly pain free day since.

He tried to discharge me in November 2021 and I said I wasn't comfortable to discharged since my symptoms were actually worse. I have seen him once more and he told me to call and book my next appointment. When I did so, I was told that I have actually been discharged and did I want to re-refer myself. Um yes! But I don't want to see this physio anymore, I want to progress further through the system as this isn't working for me but my physio has always insisted that a referral for nerve pain will only give me an injection and there is no further help for back pain, despite my GP telling me that you went through a process of seeing a physio, then specialist physio, then orthopaedics.

Does anyone have any experience of this pathway and what I can do to move forward or at least change physiotherapists? I'm miserable, I was really fit before this and now I struggle to lift my toddler some days (physio recommended I stop lifting DD...like that is an option!). All days I have at least low level back ache and stiffness and on my worst days I struggle to lift, sit, stand etc. I'm exercising but it isn't more than twice a week because I can't tolerate more and I'm just fed up. I'm only 30 and don't want to live like this forever.

Any advice much appreciated, my next appointment is Tuesday afternoon.

Additional information: I have been investigated for RA, AS, AxSpa and had initial tests into another immune condition but no further. Private blood tests flagged a possible autoimmune condition and to test further (which didn't happen). NHS said they couldn't accept tests, redid them and said they all came back normal. Also looked at SIJ dysfunction but was decided it is unlikely considering the MRI clearly showed a prolapsed disc and SI joints looked okay.

If you can afford to go private do it now. My situation was very similar with a useless NHS physio and a worse GP.
Has anyone discussed steroid injections or a discectomy? I was too far gone for either of those and ended up with a spinal fusion, but if I had waited for the NHS to listen to me I would now be unable to walk.

@HeadToToesNo I'm sorry to hear of your experience! I fear that I am going the same way - I just feel like there is something more to it. I feel especially aggrieved when I look at the NHS website for a slipped disc and it claims they heal in 6 weeks...certainly not what I'm experiencing! Please don't get me wrong, I am miles better than I was at the peak where I couldn't walk but to still be in daily pain I just feel like more can be done and I'm more than willing to put in hard work myself in physio etc!

What would you go for privately if you were me? Continue private physio or somewhere else?

I have previously seen a sports physio (just before the first incident), an osteopath, a mobility rehab specialist and also a podiatrist who diagnosed issues in my feet and I now have custom insoles which I do think make a massive difference. I would like to see the Osteo again but I also have the fear because last time I saw him, the second incident of not walking happened a week after (and I'd rapidly declined since that appt).

I hope this isn't too garbled and makes sense!

I wasn't eligible for NHS physio and I asked for a referral to pain clinic. They were great, had lots of suggestions, organised MRI for me and also pain management procedures.

Waiting list a few years ago for clinic was 10 weeks. I imagine could be longer now due to pandemic backlog.

@HeadToToesNo no one has mentioned a discectomy but physio has mentioned a nerve block injection but says that won't do anything for the back pain and doesn't believe it is currently necessary. I take 20mg Nortriptaline daily as well, some days it seems enough and others I feel like I need more

I did pay for private sports physio too

@Thecurtainsofdestiny thank you, that is so interesting, no one has mentioned pain clinic to me. Do you think I'd ask for the physio to refer me or is it back to the GP?

It was my GP who referred me. Might depend on care pathways in your area.

Acupuncture is another option.

I was you a good 8 years ago (when I was only 24!). I paid a lot of money for private physio and acupuncture, the NHS did an MRI after many months and it showed 3 slipped discs, lots of nerve impingement etc etc. I got referred to a spinal surgeon, in the time it took to wait for that appointment I did A LOT of Pilates and core exercises which had been given to me by physio. When I saw the surgeon he wanted to do a double discectomy as the scan was so bad, however, at that point I had worked really really hard to get a strong core, did lots of walking to the stretch too. I declined the surgery, and I’m so glad. The removal of the disc then pushes the problem/pressure higher.
You say your seeing the physio/other people but are you doing the exercises you are provided?

I have since had a baby and do a very active/manual handling type job and I occasionally get very sore, but nothing a hot bath and and few stretches doesn’t help. I also have a hot water bottle on my back every night.

Honestly it was really hard work, but putting in the work has really saved my back!

Really similar story to @Fefifoefum here. 4 years ago I was bedridden for 3 months due to L5/S1 disc prolapse. I had every drug going and was seeing an NHS physio which was actually very effective but I wasn't allowed to have appointments more than one every month and couldn't book him privately.

After seeing to surgeon who wanted to do a discectomy I panicked and started to really push myself, I swam as much as possible and found a Pilates instructor with a reformer bed who was amazing....the relief from pain was instant, I couldn't afford to carry on the reformer lessons but still go to class every week and practice self care at home daily.

I also see a chiropractor although he doesn't do any cracking or hard stuff, really just manipulates my back and is very gentle. I hope you find some relief soon, living with pain is hell but I do think in my experience that pain relief is not the solution but movement, exercise and improving core strength is.

@Fefifoefum I'm so glad to hear a positive story! Yes I am doing the exercises I'm given but I don't feel they are making much difference. I am continuing to run (my preferred exercise) under physios say so but twice a week and max weekly mileage is 5 miles (normally do 1x 3 mile run and 1x 1.5 mile run). He says to only stick with 1 exercise. He never gave me instructions on cooling down stretching but I have made my own plan. The exercised he gave me were bridges and sciatic flossing. I was left with those for 3 months. Next I progressed to 1 legged bridges and lowering and raising a dumbell and rounding my back as much as possible (this made my symptoms worse so was told to stop). This was my instruction until January when he added in some sets of cobras and I've been left since. I've done it all and I have slowly built endurance (I could only do 5 bridges to start and can now do 3x 5 one leg bridges per leg) but I just don't feel that I am building strength or doing enough. Maybe I'm just inpatient but he also gave me advice on if the exercises increases my nerve pain then stop but if it increases my back pain then preserve and ignore it, which feels detrimental.

@Letmedowneasy thank you for your story as well! I've just had a look and there is a pirates studio near me with the reformer beds so I'm going to take a proper look into it later. I think I just need to overhaul my whole thinking, drop the running completely (which I'm gutted about as I've never found anything else I enjoy as much) and focus on rehabbing my body for a good while before trying to run again.

I hope you don't mine me asking - did you find you could swim okay even though your back was weak? I was worried that because my core is shot that it wouldn't be great but starting to think swimming and pilates might be where I need to start...

Sorry to take so long to come back to you, long day!
I saw various physios, osteos and chrios and I got so fed up with everyone telling me that they could fix me but nothing getting better that I went for a private MRI and consultation with an Orthopaedic Surgeon. He was the first to suggest surgery, but at this point i could barely walk. I sought a second surgical opinion which led to more imaging, by which point I had developed footdrop and it all got a bit more serious.
I would definitely recommend seeing an Orthopaedic surgeon for a consult to discuss your options - losing my temper and booking that appointment completely changed my outcome.
I'm so sorry you are struggling, I completely understand the misery of being in pain like this and not feeling listened to.

@BlueEyesUltimateDragon I found swimming ok, I usually do breast stroke and my technique is not very good but I found it helped to be in the water..also if you are having a bad pain day or get a twinge you can always just hang out at the side and bob around in the water which is a lovely relief from the pain.

Pilates is my saviour though, just learning to listen to your body and hold it in a correct way. I was lucky that I found the right class for me by chance, as long as you find an instructor that understands that you are trying to recover from injury, I hope you find an answer.

Ok so, if you read my history I have just had a spinal surgery for Cauda Equina. Has that been mentioned to you before? If not, look it up and keep and eye out for the other serious symptoms. I bounced from doctor to physio until I said absolutely no more physio as it doesn’t work and then physio referred me to MCaS (muscular skeletal) which I have never actually got to seeing as it went serious pretty quickly last Sunday. Hard to believe that was a week ago actually.

I wonder if it's worth trying swimming instead of running? Or something else low-impact? I had a similar story of being fobbed off with physio for months ( too long to describe) but when I was eventually referred for an MRI, multiple slipped discs identified, and after another six months wait had a spinal injection, the surgeon who did it actually advised me against carrying on with running as exercise due to the risk of impact/jarring to the spine. It's been a very slow recovery for me and I still have low back pain and sciatic pain, but at its height it was unbearable and almost comparable to childbirth. I was on the list for discectomy but have taken myself off it as it us now liveable with. (Unrelated but interesting given what you say about your testing history - I was diagnosed with CCP positive RA about a year later.)

I would also second asking for a pain clinic referral. Mine was just a long phone call with a consultant as it was in the first Covid wave, but it did help, and she was the one who authorised the spinal injection.

Also, remember that you can always complain via PALS if you are unhappy with the way your case has been managed.

Oo these stories sound good.

I have been referred for pain relief injections and/or surgery. Been suffering since December and am in immense pain.

I've been told to rest and no exercise. I went for a couple of walks last week and am unable to drive this week. It's awful. I don't want the cortisol injections or the surgery. I had a pretty good core before sciatica happened so I don't know if it will work or not if I start pilates.

7 days of cortisone cured my prolapsed L5 disc pain. I couldn't walk it was so painful, went to A&E several times with the pain. That was 19 years ago and have never suffered since (twinges if I lift heavy objects though...) Physio did nothing for me.

Pilates for a year plus cycling helped me, plus I learnt to swim head in properly so lower back was not stressed in the water. It kept me exercising but not weight baring. My DH helped to raise my handlebars with a longer stem so my lower back was not under pressure. The cycling really loosened my SI joint.
5yrs later my discs went again this time I was more assertive at GP got a referral to pain clinic plus had private sports massages every other week. I didn’t take up the offer of the steroid injection as I used the cycling/stretches/Pilates/swim/ iced my back not heat it irritated it, to get it back under control quicker. I didn’t have a sleepless toddler either which was massive bonus the 2nd time. I too got told stop lifting the toddler which was very hard to avoid. I hope you can find some relief soon. I nearly lost my foot pick up and was numb hip to toes it took 18mths to get full movement back and all whilst with a v. young child I felt forgotten and lived in fog of pain for months.

I'm not allowed to cycle, I've been told I shouldn't walk very far either. I was going to PT sessions before this happened and was fit. I am so fustrated that I've been told not to exercise.

Definitely with you on the ice. Ice helps mine more than the fuck ton of painkillers I'm on does.

I just want to feel normal again.

One thing I’ve learnt in the last 15yrs managing my back is I have to keep moving somehow. Doing no exercise just made it worse every time, it’s about finding what you can do and build on that and try not to focus on what you can’t do.
I would try out different exercises / movement gently to see what helps, only you are an expert on your back & how it feels.