Excruciating sciatica - please help!

[KR2013]

I've had sciatica since Tuesday morning, and I'm absolutely going out of my mind with the pain. Think I've been pretty lucky with the GPs taking it seriously (although turning up in my PJs and deep breathing like I was in labour throughout the appointment probably helped 😬) and I've been prescribed pregablin and diazepam, plus oral steroids as I have Rheumatoid Arthritis so he thought trying a stronger treatment to reduce inflammation was reasonable. I tried a diclofenac suppository and codeine with diazepam initially but got no relief, and GP removed the first two as he didn't think they'd do much for sciatica. I've also tried a tens machine but didn't feel like it helped when the pain was really severe.

Yesterday was a better day and I was relatively spasm free, although literally lay on a heat pad all day and only got up to go to the toilet.

I've had another huge burst of pain this evening (I think because I tried to move around more today rather than just lie on the floor/bed) and I honestly don't know how much more I can take - the pain is just horrendous, and I literally can't move when it hits 😩 I've come close to ringing for an ambulance twice as I don't know what else to do when I'm locked in one place and grunting in agony.

We're looking into whether I can get an MRI through my husband's health insurance, and the GP said if not, rheumatology should arrange it due to higher potential for disc issues (although he suspects the wait will still be pretty long, but it's quicker than the usual NHS avenues), but any wait feels unbearable currently.

The doctor said physio is an absolute no go currently as I'm in far too much pain for them to do anything.

Not sure what I'm hoping to achieve with this message, apart from maybe hearing others' experiences and any tips...and maybe just some sympathy whilst I'm feeling truly shit and sorry for myself 😭

We ended up paying £10k for mri and surgery for my dp, he was unable to get up off the floor most of the time and the NHS waiting list to even see a consultant was 18months at the time in our area. Turned out he had a prolapsed disc which had sort of exploded onto his spinal column. Lord knows what would have happened if we couldn't scrape the cash together. Go private if you can

@KR2013 - best wishes, this sounds horrible. I was in similar condition seven years ago and recovered without surgery. I got very angry with my GP and NHS who didn't take it seriously and I then had rapid help but I think the posters who mention private help are right. It will speed it up.

I am now taking morphine for my sciatica and off for a MRI next week.

@KR2013 how are things?

@KR2013 I've been there, you my deepest sympathy. I ended up with an L4-L5 fusion and decompression etc.

I found I could get some relief by lying on my back on the floor with my legs on a bed so my body forms a kind of Z but with your thighs vertical IYKWIM. It stretches your lower back a bit takes some pressure off your sciatic nerve.

Thanks for asking! I'm still in hospital - things were feeling more positive (had managed to walk a few steps with the physio yesterday morning), but I then had an absolutely horrendous pain flare yesterday afternoon (felt as bad as Monday when I was admitted), and I then had an awful night's sleep with constant pain. The numbness in my leg has increased too, and I still haven't had a bowel movement (being laid flat most of the day won't help, or all the painkillers I'm taking). They've now said I need to have bowel care - they tried a suppository yesterday but nothing happened apart from making me feel sick, so I have a horrible feeling I'm getting an enema later today 😬 I felt super flat and low yesterday, but am trying to put my positive pants on and just see this as a small stumbling block. It's hard though.

I'm finding raising the knees on the hospital bed really helpful, which I guess achieves the same thing. It's about the only position I can stomach when really sore.

If your bowels are affected this could be the meds but watch out for it being a red flag of nerve damage.

@KR2013 and I haven't had any "proper" sciatica since the fusion.

@KR2013 oh gosh how frustrating, you're doing absolutely amazing to keep positive. I've been thinking about you & hoping you're doing better. Annoying that the suppository didn't work, perhaps once the bowel issue has been relieved you might feel slightly better if there is pressure in that area. What is positive as well is that you can feel slightly better, as you've had a bit of relief, so that's a good sign. Those periods will increase.

Ah you poor thing, please hang in there, you're in a safe place🙏

I had similar issues in the past but cervical spine (and ended up having spinal fusion due to nerve damage). What I would say is that this 'acute' phase of pain will subside. I know if feels like it won't but it will. My surgeon explained to me that the prolapsed disc emits its jelly like contents which press against the nerves which causes the horrific pain that is almost uncontrollable. Over time (weeks) the contents the disc emits dissolve (are assumed into your body) and the pressure on the disc lessens and the pain reduces (considerably).

The first major flare I had of this - after around 3/4 weeks the pain (almost overnight) lessened massively. The surgeon told me it would but I didn't believe him.

I hope this is the case for you. Don't lose hope as I know it feels at times that you will never feel better again but the vast majority of cases the pain goes.

Ah my friend was in for a few weeks. She's okay now but uber vigilant found a private physio after a few months and adheres to the exercises.

I'm limping along with my scoliosis but can't work out if it's my back or arthritic hip that flattened me some days.

How are you now @KR2013 ? Hope you're feeling a bit better.

Ahh, thanks for asking - I'm doing a bit better, thank goodness! I finally had my caudal epidural on 15th April, and then was discharged home on 20th April. It initially felt like the epidural hadn't done much/anything, but the last couple of days my pain has reduced quite a bit. I still have a lot of numbness in my leg and foot and weakness in my calf which makes walking challenging, but my pain is now only in my foot and back, rather than shooting down the whole leg, and is mainly when I'm sitting or standing rather than all the time, which makes such a difference. I'm aware the effect of the epidural may not last for long, but hoping I'm one of the lucky ones 🤞🏻

I have a follow up in May with the spinal team - I'm not sure if this is standard or whether they suspect surgery will be needed (throughout my stay, the nurses kept asking if I knew when surgery would be, but I could never get a clear answer on whether there was an assumption it would be needed or not when I questioned this so who knows 🤷🏻‍♀️ I was on an orthopedic ward where most people were awaiting or post surgery, so they may just have been muddled.)

My discharge report which includes the MRI report says the disc extrusion was 2cm and compressing the S1 nerve root. Looking online, 2cm seems to be big, but it also doesn't look like the size of the extrusion necessarily relates to whether you need surgery or not to properly fix the problem - does anyone know any more about this?

I hope everyone else is doing ok - how are you doing @Topjoe19 ?

So glad you're slightly better. Fingers crossed you get long relief from the epidural. That sounds so painful, no wonder you were in agony! Must be a relief to be home.

I'm ok thank you, now got a referral to pain management so see what they offer.

I'm so glad things are better for you, @KR2013

I posted much earlier about going for an epidural, in this case CT-guided bilateral 4/5. It hasn't worked, though I am not agony and have no flare-ups. For context before the epidural I had 95% pain relief with max dose of Panadol-Osteo and 50mg of Palexia. What I have now is not as good.

I still need the full dose of PO, but don't touch the Palexia as it's not a long-term solution.

Back to the rheumatologist.

I think the size of the protrusion is irrelevant, it's the position of it and how much it is impinging the sciatic nerve. I had a caudal epidural a few years ago which helped with the symptoms then a month later I had a second one. I was told at the time they would usually only do three in a year. Luckily my second one helped and over the next few months I recovered completely. I then had a herniated disc again three years ago but this time the epidural didn't do very much at all and I ended up having surgery. I wouldn't hesitate to have surgery again if needed. The relief from pain was immediate. I hope your recovery continues well and your pain continues to reduce now.

I went straight to an osteopath. Sorted in one session.

Dickens suppositories are amazing for sciatica!!!

Ice pack every hour for 15 minutes. Try to lie or stand not sit. Walk every hour.

Please donr go to Ed unless ypu have signs of cauda equina (lose control of baldder etc)... it is an emergency in,that scenario otherwise not. I have had it and feel your pain. It is excruciating.. and also there is little you can do in that acute phase... balance pain relief with side effects and lie it out (in my case it was impossible to sit).

It DOES get easier OP ....it takes time but it will naturally ease and improve (in most cases ) ...really really hard but it does.

In my case I ended up off work for a long time but got back, and am OK. I do pilates and that helps a lot... but like others have said you can't do that u til you are more settled. It may be worth doing it qith a physio at first so you jndrrstamd the movements required ...gym instructors are hoit and miss and you need to know from a specialist if you have a back injury.

But the pain will change and I hope this acute part doesn't last too long for you. Hold on in there.

Thanks for this - I thought the size of the protrusion didn't really matter from what I could see, so useful to have this confirmed 👍🏼 There may be more from the MRI report than I'm aware of (not sure if they put everything on the discharge report or not) so I'm not sure about the level of nerve impingement. A nurse mentioned the nerve being well and truly trapped/compressed on one of my really awful pain nights, but not sure where they got this from. I think I may just have to wait for my follow up with the spinal team to get answers!

Out of interest, did your epidural help with numbness and weakness at all? I haven't had any relief from this, just the pain - the numbness and weakness is really quite limiting at the moment (I'm numb over a large portion of the bottom of my foot, and over a decent chunk of the side of my lower leg, and my calf muscle is very weak.) It's making me very unsteady walking.

I don’t remember the numbness being much different after the epidural but from reading your case I don’t think my numbness was anywhere near as bad as yours. The same with any weakness. From what I understand the epidural is just for pain relief, it won’t make the disc bulge any smaller so that will still be pressing on the nerve. However because the pain is reduced you should be able to be more mobile and do some exercises to help reduce the bulge. Have you looked at nerve flossing? Just be really careful with any exercises you do, it’s important to do them but you have to take it gently so as not to do any more damage. I went to a sports physio who was brilliant, I would recommend finding one if you can afford it, they’re not cheap unfortunately!

Completely agree about the nerve flossing, that's really important to keep the nerve pathway moving if possible. They're really tiny movements and shouldn't hurt, if they hurt then ease back a bit.
I had a similar experience to you but with a disc prolapse each year for four years. The third and fourth time I had intra spinal injections but that fourth prolapse the injection didn't work for long and I ended up with a microdiscectomy. That was a miracle!
The main problem with relieving the pain but still having nerve compression and numbness is that the longer the nerve is compressed the less likely it is to recover fully. If I get another prolapse I'm going private like a shot for surgery as I already have permanent nerve damage. If you get offered surgery I'd think carefully before rejecting the idea.

No experience, but poor you @KR2013 . You've really been through the mill. I hope you get more permanent solutions soon.

I'll have a look at the nerve flossing 👍🏼

And re. surgery, to be honest if I was offered it when I see the spinal team, I'd take it in a heartbeat. I'm really concerned about the extent of the numbness and weakness, and really don't want it to be permanent if there's something I can do.

We're waiting to hear whether the health insurance my husband has through work will cover physio and a consultant appointment, and if not, are considering paying for it ourselves if we can. Whilst I know the usual sciatica advice is watch and wait, this whole experience has been anything but 'usual', and if a year down the line I'm still unable to walk far or drive because of the nerve damage, I'll be kicking myself that I didn't follow my instincts. It may be that it does resolve on its own, but I want to hear from a specialist that they're not concerned first (can't remember if I mentioned earlier, but all my care in hospital was overseen by gastro or respiratory doctors, I think basically because orthopaedics were only interested if I had cauda equina and they needed to operate immediately, but that means I could never get clear answers from anybody!)