Sciatica & low back pain

[Horseshoebeach]

I was hoping all this would be gone by now or at least easing a bit. But several weeks on the low right back pain, buttock (rump area), sciatica in leg down to the ankle, is quite literally making life hell. First off I thought it was down to a fall I had. The x-ray I had confirmed there was no fracture with a little additional info re osteophytes lower down in the spine. Sitting for longer than 10 minutes is difficult to say the least. Then there's getting up from sitting with muscle type spasm, then finding a comfortable position to sleep. It's always there. Had an MRI (don't know results yet) & I'm so embarrassed to admit I barely made it through (felt panicky). Then at the end when it was over I asked the radiographer if he had all he needed and to take longer if he wanted (had calmed down by then) but he said he had all he needed. Now I'm worried in case he felt the need to rush it because of my anxiety. Many people have it so much worse with pain and illness and I know that. I just feel in such a mess with this and want this thing to start feeling just a little bit better. Has anyone been through something similar that seemed to go on? This is my first time posting so apologies if I'm on the wrong thread (& so sorry for the moody rant) X

Client and red how are you doing, hope ok fingers crossed for you, it’s so up and down you just don’t know from one day to the next how you will feel

Hi guys, thank you so very much for the well wishes 💐 to you all.

Physically I'm doing quite well. I was just starting to get out of the house (albeit in a wheelchair) and was looking forward to physio and cracking on but all that is now not to happen for another 4 weeks so I'm back on my pillows watching TV all day long. I requested my medical notes today from the hospital, purely so I can spend a few hours going through them - I thought it would be really interesting to see what they say. I also get all my scans which I have a weird obsession with.

My hobbling is improving, yet to manage any sort of distance and I can't stand still at all, my left leg just can't take it. I'm mainly not in pain pain, more odd, crampy, uncomfortable pains.

Just feel like I'm back to square one really. Surgeon said that the cauda equina could come back at any time. If that happens it's surgery, then a planned fusion. If my back starts playing up it's a fusion. He really doesn't want to do it as I've had that much bone taken out of my back it's going to be tricky, and I'm 39 and it will massively impact my quality of life. Just feel like I'm sat here waiting for shit to go wrong really, although I'm trying to stay positive and I tell myself about every 30 mins that it could have been so much worse.

I'm now under my surgeon every 4 weeks for the moment, and I have Southport in February and I'm hoping they will help with physio and the few small bladder issues that have arisen.

I'm so sorry for the long essay/rant. There's no bloody quick way to explain it and and it also helps to get it all down.

I'm still reading, and still thinking of you all often. I am actually much luckier than you guys as I no longer have the pain, and I sympathise MASSIVELY with you all.

Much love x

(Ps, I know it's Mumsnet and I'm not supposed to be putting x on here etc, however I give no shits about this - think we have all gone through enough to warrant throwing out the odd sign of affection hahaha. XXX)

Oh red the pain is awful yes, but bless you what an awful situation your in it’s the not knowing isn’t it, feel free to vent as much as you want can’t concentrate at min as I’m not comfortable sending you best wishes lots of luck and hugs xxxxxx

Sorry red couldn’t concentrate last night was in pain, so up and down one minute I think I’m improving the next I’m pulling my hair out. What’s really got to me the most are the constant contradictions I have been told and read by doctors professionals etc you can’t make it any worse is one they use frequently what bullshit the physio left me in agony set me back I have no doubt, it will heal don’t worry about it last words as I left consultant then said don’t forget to look out for ces 😏😤 fo sleep like this , don’t sleep like that do stretch don’t stretch don’t know if I’m coming or going one doc said whole disc just dissolves another said it will retract fuck knows hope your dealing with more competent docs than me. The waiting must be hell for you bet your just feeling every little twinge thinking oh no what’s that it really does mess with your head, hope you continue to be out of pain though as I have to admit if I could just lay pain free I would be a happier person but hay ho I can walk ok so can’t have everything albeit very slowly only position that doesn’t hurt weirdly think I’m completely opposite to anyone else 🤨 keep posting let us know how your doing princess had made such good progress I’m always reading her posts from the beginning as it gives me hope best wishes and virtual hug ate massive box of m&s chocolates last night made me feel so much better if a little queasy really overdone it, it at least if all else fails there will always be chocolate 😂

Sorry to hear hope u all get well soon

Absolutely User - chocolate is the answer! I ran out a few nights ago and had to get the cooking chocolate chips out. Even the kids were looking at me with disgust that I had sunk so low! So sorry to hear you're still in so much pain. One of my friends also had a similar situation where as long as he kept moving then he wasn't in pain but he couldn't stand still! Eventually he had surgery and is a good news case - back out cycling and stuff but it did take quite a while after surgery for everything to calm down so take heart Red that although you feel you have regressed you may well still get better. ITS JUST SO BLOODY SLOW!!! And every time we do something that makes it go tweak we almost have a panic attack thinking we're gonna go back to the agony 10/10 pain!
Today I had a second spinal epidural - this time it was facet joint and transformaminal. Which apparently is a more targeted injection and will have a better chance of working. However the consultant did say that if, in 2 weeks, the pain & weakness is still the same then they would recommend surgery. So I am lying on the sofa where I will mostly stay for the next week or so in an effort to try and make the steroid stay in the right place.
Princess I hope you're feeling better and haven't overdone it too quickly? I know that sometimes when I've felt better I get a burst of wanting to do stuff but I guess that's the most dangerous time.....
Anyway back to Netflix and love and hugs to all dealing with this 💩. It truly is the worst pain ever and i hope we can all recover from the psychological trauma too...... 💕

My god RedDhalia, I.had no idea you were still so bad and reliant on wheelchair. Good to hear you're not in terrible agony now but it's heartbreaking the impact it has upon your life isn't it? I have an appointment to see neurosurgeon next week, just to see what he thinks and if he wants to do another MRI. Really strange to think that at my last appointment with him only at end of November that I couldn't walk from the hospital car park up to the surgical outpatients centre (about 100 metres) without leaning on DH, stopping to slump over car park wall, hobbling in agony and my back so locked up I couldn't stand up straight. Only at my pre op assessment back in December I was still relying on crutches and the physiotherapist there commented on the forward flexion in spine and how bad my posture was. What I mean is just 5 weeks later I am stood up straight with no pain 95% of the time and the pain that I do have no is a fraction as bad as it was. There is hope for us all to make recoveries. Just small steps isn't it? And sometimes one forwards and 2 backwards!

I still am terrified of it reoccurring. The psychological affects were/ are huge. Same as you said LocalHer0, the slightest tweak or twinge and I'm panicking. I don't know that that fear will leave me ever. No pain like it in the world.

User, how you feeling tonight? I have had a lovely evening out for a meal with my cousin, drove out for 45 minutes to nearby city (couldn't have done that before christmas) and say pain free enjoying meal and company. I was a bit still when standing up after meal (chairs weren't the best) but stretched a bit and we went on a bit of a walk round the city centre and back to car and I feel fine. Again, just a few things I couldn't have enjoyed just a month or 2 ago. I've now cut down to 900mg of gabapentin and not feeling any ill effects. Fingers crossed it continues and you keep on the ( albeit very slow) path to recovery
X

Sorry so many typos sat pain free not say and was a bit stiff after meal not still 🙄 Chubby fingers haha.

Hi everyone how are you doing red and local, improving I hope. Princess sounds like you really are almost back to normal driving out for a meal then a walk and no pain wow amazing. I am having good and bad days overall improving I’m sure but still unable to drive or really move, sit or lay to long without having to move to ease pain , but I have to remember I will feel more pain even if it is improving as I’m unable to take any of the meds that would block the pain, so on the whole just trying to stay positive, so looking forward to being able to drive again and sleep all night keep us Ostend it’s good to know how everyone is doing

Posted sorry bloody fat fingers

Hang in there Red, it sounds really really tough. Are you on FB? There are some great CES groups, with quite a few people who are severely affected, so they might be a good source of support.

You guys are ace do you know that?

Thank you for all the support, it's so appreciated.

@Booboostwo I am not on Fb but have activated an old profile just to join one of the groups. It's great for immediate answers for questions, but I'm trying not to get heavily involved as tbh, I find some of the stories on there upsetting.

It's also made me realise that this is probably just the start of shite happening!! There is one girl on there that has started having urine accidents 8 months post surgery! It's a real lottery with CES and I'm lucky compared to most.

Like I said previously, I'm the lucky one in this group - the pain has gone, and is rather take this side of the coin than have that pain again.

Love to all xxx

Red totally agree the pain tops everything hang in there and keep positive, like you I’m more for hanging on to the positive stories, it’s worrying enough as it is without filling your head with worst case scenarios just so pleased your pain free that’s brilliant 😁

I agree with Red - you are all fabulous support. I may not be able to post anything but I'm always checking in to see how you're all getting on. Also agree with Red that sometimes reading these stories can make you worried and frightened. I joined a group on FB but have left because it was making me anxious. I tell myself that the problem with those forums (and I guess this one too if I'm honest) is that the majority of people don't have good news stories so they are skewed towards negative outcomes. However with this thread I feel that we're more supportive and personal as it's such a small group so I do come here to feel better and seek support.
Which is why I'm here right now.... I had my transforaminal epidural with a facet joint injection on Thursday and was told I should feel some benefit around day 3 (possibly up to day 7). Yesterday I felt so much better and thought "yay" this one has worked! But today I woke up in lots of pain again and feel utterly effed off. I know I have to give it until the end of the week but I just want some relief from this as it's doing my head in!! I was told that if this didn't work then surgery would be recommended in order to try and save the strength in my foot and calf.
Sorry for the rant - I just find it hard to stay cheery...

Don't worry about the rant Local, we all need to vent. It is so upsetting when you feel slightly better then plunge back into pain the next day/ hour/ week. I must admit I got a bit obsessive constantly checking for improvement or signs it was getting better so I'd be constantly disappointed and sad everytime it wasn't going in the right direction. Recovery is rarely a straight line, ups and downs. I would definitely consider surgery if this injection isn't a success for you. Anything to get out of pain... or at least reduce it to a point where you can think straight and function.

I find massive support here too. Not just when the pain was horrendous but even now I seem (touch wood) to be recovering. I still have ups and downs and I still like to check on you all and hear from you. I found the same problem with Facebook sites that it was all terrifying and really triggered my anxiety from all the worse case scenarios etc. I know we have to be aware of good and bad I suppose but do keep in mind that most people do recover, either naturally or with surgery. Those forums and groups are filled with the few people who haven't recovered well and aren't out living their lives and moving on like the vast majority of people in this situation. So it looks to us in the depths of it, that this is forever, there's no hope. It's not an accurate representation. The 98% who did recover are off living and recovering. Remember that. Those groups I'm sure are great for those who need it but it just was too much for me. I had to leave!

Anyway User, good that you feel like you are slowly recovering. You will drive again, I'm sure of that. I didn't think I would be able to do any of these things back from August til December. Still have to pinch myself to check I'm not dreaming being able to live again. Sounds dramatic but it's true! I don't think I'll ever take it for granted. Pain like that does change you. Just keep going. Crap advice I know!

I have my appointment with neurosurgeon today for assessment. I'm hoping he will discharge me back to gp but he may want to do another MRI since the pain is still there sometimes (rarely and not as bad though so really wouldn't opt for surgery now)

Anyway, keep going everyone. I'll keep you posted!

Localhero probably still taking effect so try not to panic yet , I know it’s easier said than done, I honestly have found the support from you all the only thing that’s kept me going at times. I have felt so low consumed by the pain, I can imagine red feeling so much better just being free from the pain, hope it stays that way. Princess started on the thread when I was at the lowest point and she had really pulled me through at times sometimes even though our bodies are all healing differently you just need to hear some words of encouragement, my main problem is I will have a good day average pain feeling so much more on top of it all, or a good night I had one night with 6 hours sleep in one go I was thinking great I’ve turned a corner then nope way back down again haven’t slept for more than 2 hours in one stretch since, last 3 nights haven’t settled without pain so just couldn’t dropof even with the diazepam 😤but I’m determined this week to get in car and do a short drive up the road and back fuck the pain I’m giving it a go. It really is the hardest thing I have ever dealt with but I’m staying positive and sending you my positive vibes even though I’m hobbling around the kitchen in agony and can’t sit 😂

How is everyone doing lately?

Good to hear from you princess, how are you doing did your consultant sign you off? Hope so. I was wondering how everyone was too. I am making slow improvements can have the odd day pain free until the evening, so better but oh so slow as I then try to do something that then sets me back, still find sleeping hell, but I think I have finally accepted that I just have to go with it and let my body heal in it’s own time, just waiting for a hydrotherapy appointment as I have tried everything else and found they all made the pain much worse so think I have got to start some exercises as I’m worried I will never be able to bend forward again 😲 small steps though, hope everyone else is doing ok, and really have everything crossed for you all

Hi guys!

Hope you're all doing ok?

Agree with the "it's all so slow" comment. However I'm starting to see improvement albeit at a snails pace.

I can walk further than a couple of weeks ago and my leg feels stronger. Ended up in A&E on Monday with bad leg pain. I wasn't chancing it! I now have L1 nerve impingement in 2 different places (not even sure how that's possible). No urgent management needed and I'm back with my surgeon on Wednesday.

Am at Southport spinal injuries unit for my first assessment on Tuesday, I'm actually very intrigued as to what it's all going to be like. I still think I'm going when I don't need to, but my surgeon says I'm to go, so ill go.

Anyone else had issues with pregablin and weeing? I'm very rapidly declining with my ability to wee. I know I need to but I sit there for AGES doing a little drip (yuk, sorry) and then pee like an old man once I start. I'm going to have to speak to someone soon as I'm going to end up totally unable to pee at this rate.

Fucking backs. They are absolute twats when they want to be.

Love to all xx

Hi everyone,

Sorry no experience of pregabalin Red. However both me and my sister who also has disc problem noticed our pee flow was really slow when the impingement was bad. I did mention it to doctors but no one seemed particularly concerned as I wasn't actually peeing myself or unable to go at all. Has this only been while you're taking the meds? Sorry you're still suffering with various s1 problems. You're having a really shit time recovering but I hope you get there soon! How is the pain now? It's good that you are able to walk a bit more now though. Recovery is weird, up and down and slow as hell.

User, lovely to hear from you. Nice to hear you are pain free some days til evenings. It took me months and months to get pain free in day times... would say definitely since Christmas I've been having more and more pain free times. I had a painful day with my leg on Tuesday last week and immediately the panic set in bit next day I woke up absolutely fine again. Weird! I now don't have any sciatic pain at all (touch wood!) However, like you, sleeping is still a challenge. Not so much because of pain but think it's just a habit now for me to wake every couple of hours and I've never been great at going back to sleep once I'm awake. Also when I do wake my lower back feels soooo stiff and have to wiggle about gently and try to free it off a bit! But I'm trying not to complain because nothing compares to those 5 months of agony so I can handle a little stiffness!

Things have gradually returned to normal really here. I'm working my usual hours again. Doing the school run every day, which weirdly i used to hate the school run but got to say I appreciate it now not hobbling and grasping on to every other gate post and trying to relieve the pain!

Anyway, yes I got signed off from the Neurosurgeon who was very pleased with my recovery. Said he was so relieved as he tried to avoid doing spinal surgery where he possibly can because mostly our bodies will heal them selves but it's a long and painful process. He checked I can stand on my tip toes now which I couldn't do on right side at all, checked there was no residual numbness or tingling. Strength is all back to normal apparently and it certainly feels pretty much back to normal. But my flexibility is no where near what it was. Leaning forward is still a struggle, no way I could touch my toes etc. Not really sure if that will ever come back or whether it needs more time. Anyway he's referred me back to gp now but said i can phone his office any time if it gets bad again and he will arrange and urgent referral from my doctor to see him again which is reassuring.

Anyway, sorry for rambling. Lovely to hear from a couple of you and I am hoping things continue to improve for you all. X

I have been "battling" bladder cancer and to add to the Radiotherapy genital nerve pains and the already slipped discs L4L5 , I ripped my sacrilliac bone area in bed, ended up in A&E on 7th December after collapsing unconsious after taking Ibrufen and codeine@ 6am on an empty stomach teletransporting me from kitchen to other end of dining room- how did I do that?-and finding myself contorted on the floor when I came to.
To cut a long story short, DD dermanded I have an MRI at GPs - I'd been refused one since 2016 when I first hurt my lower back in 2015.

Due to my bladder cancer and the lower back pain a quick appts letter arrived for 20th Feb requesting a "whole spine* MRI.

I need advice now about the time I have to be on my back and If anyone had 2 sessions on different days ?
I have pain only in the lower back and feel that is all I need and that takes only 30 minutes not 90 for a whole spine.

Getting through to the hospital for information is another "battle".
Can anyone help. please?

Good to hear updates from you Red I have had seeing problem from day one but no one has been bothered when I have mentioned that it’s hard to get it out at times then stop start. Sounds like things are getting better though hope Wednesday goes ok good luck for that. Princess so great you have come so far it’s brilliant to hear, since I posted I have been having some almost pain free days, I haven’t had one since 🤨 but I have driven last week first time since November,couldn’t remember how to start the car as it’s fairly new and is push button😂 got in and it felt like she’s ago. Think I have lost my confidence slightly too did quick drive with little one, she can get in car seat luckily so 3 little bags of food then home, I just felt scared of making the pain worse so rushed home but it felt so nice to do it finally. My doctors are being really difficult about prescribing me the diazepam have to have phone consultation and virtually beg for it, I wouldn’t mind but it’s all I’m on and it’s 5mg the lowest dose I use 2 every few hours at night to ease the spasms so I can at least lay down for few hours all I’m taking apart from that is ibuprofen and paracetamol which barely touched the pain when it’s bad so could do without a fight for drug’s really 😤 so pleased your life is back on track must seem like a weight had been lifted. Local how are you doing? Dihedral my mri just lower spine was 20 mins I was dreading it as laying was awful but it went fine the bed raised up and I had support under my knees, you are dealing with a lot sounds really hard going bless you, it’s such intense pain feel so sorry when someone else is going through it hope your managing the pain with good meds. Keep posting it’s good to hear from you all take care

Hi All - been a while since I last posted so thought I'd give you an update.
It's great to hear that many of you are improving and I hope new updates will show that you're on the road to recovery.
My transforaminal epidural was 3 weeks ago and, after a week of feeling like it had not made any difference, things started to improve. I straightened up and the pain went right down. My physio was amazed at the change. I had resigned myself to surgery but she thought I might have improved enough to avoid it. But wanted my neurosurgeon's opinion too. When I saw the neurosurgeon she was still concerned that I was showing signs of reduced strength in my foot and ankle. She also reminded me that the epidural would last for about eight weeks and then start to wear off so the pain may well come back. I stupidly hadn't realised this and thought it would be a magic cure! So on her advice, given that I have weakness and therefore walk with a limp and my leg gets very tired after a while, I have opted to have the surgery next week. I am still really undecided as the pain level is so low now compared to how it was but both my physio and neurosurgeon have advised that the high dose of gabapentin and the effect of the epidural is probably masking what's going on. It feels weird though going for surgery when it doesn't really hurt very much anymore and I'm getting around so much better. Like you UserI am now driving short distances again and feel like my life is getting back on track but it is still limited and I guess that's what I have to bear in mind. Also there is no crystal ball to tell me whether or not the pain will recur or whether this disc will continue to niggle without being done.
We also have a very important family wedding in Australia in July which I really want to go to and I would like to feel that this is as under control as it can be by then. But I do worry about surgery and whether I should really be doing it although it's too late now to change my mind!
See you all on the other side of surgery and I'll let you know how it goes. Love and hugs to you all I hope you all keep going in the right direction xxx

@Localher0 I hope the surgery is a massive success for you my love. Keep positive!!

Hello everyone from the spinal injuries unit in Southport! I'm here for a couple of weeks after developing some issues with my bowel and bladder. I'm hoping that once we sort the bowel out the bladder will go back to normal. Having to self catheterise currently (learnt it yesterday) and I'm not a fan.

I'm on strong laxatives etc and am wrung out. It's been awful however I'm not retaining as much so hopefully once this severe impaction is sorted I'll be able to stop the catheters.

Also hoping to have physio on my left leg whilst I'm here.. there are physios and OT's galore. A huge gym and a pool etc. Just waiting for my neurosurgeon to sign off on it.

I'm still very positive about everything - it's the only way I can cope!!

Hope you guys are all doing ok xx

Local it’s not to late to change your mind I know princess did as she was improving like you, it’s so difficult isn’t it because you just don’t know what’s going on, is it the drugs or am I healing. I have strangely gone backwards pain constant no break at all unless I’m dipped up at night then can get 3 hours without having to get up with d SF pasms and pain have just started the Gabapentin which my Doctor didn’t really want me to have but I cannot cope anymore nothing is touching it, just can’t understand how I can go from some almost pain free days back to this intense pain 😲 also what really gets me is the physio said the exercises will hurt but you must do them and on line it says don’t do any exercise that makes the pain worse 😤it’s not just pain doing them it’s agony so god knows I’m so fed up really felt like I was on the mend. Good luck with your op I would feel the same as you no one wants the op but it’s so hard to judge almost impossible will it get worse, will pain come back it’s fucking awful have everything crossed for you please let us know how you are when you can sending virtual hugs