The Back Pain Emporium is Open For Business. Browsers Welcome. Thread 7

[MatildaTheCat]

For anyone experiencing back pain it can be a terrifying time. What is wrong? Who can help? How long will this last? We,on this thread are here to support you;offer empathy and help to navigate the almost impossible task of getting a diagnosis and the right treatment.We are not doctors but people who have trodden this path slowly and painfully. We also chat a LOT and welcome all newcomers. It is strictly non competetive regarding pain and no niggle is too minor.

Those who have long term back problems know that the best way to help manage back pain is to internet shop for shoes, bags, and back support devices. Those who are new to back pain, these are important lessons to learn. And here within this thread is where you will learn those lessons.

You will also find other helpful advice on pain management, different treatment options from hydrotherapy and physio to surgery, experiences of others navigating the big and scary medical world, both private and NHS (and abroad from the UK) too, as well as issues around work, being a parent while managing pain and disability, and the impact on the relationships around us. Not to mention the pain of dealing with claiming disablity benefits. .

Between us all, we have a huge wealth of knowledge and experience, and more than the practical advice, the jargon and information, we know what back pain is like, how much is affects everything around us, and sometimes, all we need is to have people listen who Get It.

We talk painkillers regularly,sometimes drink , have hot water bottles and wheat bags galore, and hold hands a lot. It's potentially all very Unmumsnetty as we do actually show some lovin' from time to time, although we Never Ever call each other hun.

If you have advice, need advice, need a hand to hold, want to do some shopping, then come in. We are friendly. We talk a lot. Come in, have a and say hello

Previous thread for anyone interested

Hi Goaliemum, sorry things are so bad. definitely go back to your GP for a meds review and a plan. If the injections helped then maybe you can get more. If nights are particularly bad perhaps your muscles are seizing up, would a heat mat help? And do you take amitriptyline? That helps my night pain and also helps me sleep so double whammy. Worth getting over the side effects IMO. What meds are you taking? A slow release opiate at night may also help. Can you modify your activity or whatever might be provoking your flare up?

Sorry, lots of questions... If your MRI is three years old you would be well within your rights to request a new one in case things have significantly changed. Good luck.

Thanks for the reply, yes I think a repeat MRI would be good, it was definitely over three years ago. Not actually taking any meds at the minute, think that would help a lot. Haven't been to the doctor about it for ages, get fed up of going and not getting anywhere with it all.
The injections did help but only for a short while, maybe only a matter of weeks. Will try the heat pad.

belle did you have the operation process explained? Do you feel ok with that now, well, as ok as you can knowing you are having surgery? Are there are unanswered questions? We might be able to give our experiences to help you answer them. Good idea to review your emotional wellbeing as well as the pain with your GP before surgery, to help you be in the best frame of mind for the surgery and the recovery period after.

goalie back and leg pain, especially with nerve pain involved can be excruciating. Agree with matilda you need to revisit your GP. You need to request a new MRI, as 3 years is too long, especially as the pain is increasing/becoming unmanageable now. Re night time pain, while waiting to discuss with GP, where does it hurt the most when you sleep on your side? I find it helpful to have only one pillow under my head, and one fat one between my knees, and sometimes one under both my knees. I also have a wedge fusion for under my knees if I am laying on my back, but it's annoying when you need to turn over. I also sleep best with my knees up to my chest, It often hurts to get them there, but once there, the stretching out eases the pain in my leg.

In terms of pain relief, what do you currently take in the day time? Some pain meds can be given as 12 or 24 hour slow release meds, for example tramadol (opiate/opioid) and I think Naproxen? (NSAID), and you may find those helpful to ease the pain at night as this is the time when we have the least amount of painkillers to take to help the pain. And, as already said, the GP might suggest a nerve related painkiller such as amytripyline or gabapentin. In the meantime, try to save your last dose of painkillers before bed until as late you are able (try to split the day up evenly so you have limited time without being covered with painkillers) so that they can work as long as possible through the night.

It may be that you need a complete overhaul of your medicine and how frequently you take it, which you can do with the GP.

oh just read you are not taking any meds. You need to address that now.

Are there any medications you cannot take? If not, get to the GP straight away and ask for some. In the meantime, if you can take NSAIDs, I would suggest you take paracetamol plus ibuprofen at their maximum dose. You really need a stomach protector medicine with ibuprofen for long term use, but you should be ok for a few days while waiting to see your GP. If you can take codeine then I would suggest that instead of paracetamol on it's own, you take OTC co-codemol instead (codeine and paracetamol together but you probably know that).

It is possible that right now you have muscle spasms and that is adding to the leg pain as the tight muscles can press on the nerves, and the inflammation itself can cause the nerves to become inflamed. A warm bath/long warm shower helps (if you can get in and out in the first place!), as does constructive rest (ask matilda about it, she's an expert now!) and if you are able to manage, some gentle stretching exercises. (Sarah Keys' Back Sufferers Bible is excellent for acute/post acute and chronic back pain exercises).

Goalie, see you aren't taking any meds at all so definitely start ASAP with regular paracetamol and!mif you can tolerate it,ibuprofen to see if it helps. Then to GP for stronger meds and no pussyfooting around, straight onto a nerve drug and stronger opiate meds, too. The side effects will wear off leaving you more comfortable while you wait for fight for your MRI and a referral on for surgical opinion or whatever you want next.

I hint we all get utterly fed up with the never endingness of our backs but unfortunately it is important for lots of reasons to keep ahead of pain which means regular analgesia. I'm telling you it took me a long time to accept this and not just try to take meds when the pain was already bad. Pain linkers work much better if taken before crisis point. For me, the night pain you describe would be totally unacctable but I suspect you have got used to pain and possible only really notice it in the wee small hours.

Good luck with your GP but please start self dosing in the meantime. As we know on here there are no medals for brave soldiers in this particular battle.

Cross posted with Pavlov. Good to know we agree.

constructive Rest

Thanks very much for the advice, you have both inspired me to book an appointment. I'm just taking regular over the counter painkillers at the minute, don't really know why because they don't touch it! I just get fed up of having to fight the battle with the doctors all the time. Yes I think I have got used to the pain but I don't want to live like this forever.

I sort of know what you mean about fighting with doctors but your GP really shouldn't feel like that. Here's an idea of my meds: naproxen, Omeprazole, gabapentin, cocodamol and amytriptiline. These are all regular. Then tramadol sr and oromorph for top ups as and when. My GP has been very understanding and what's more we worked this out together with her actively encouraging me to take meds regularly rather than waiting for spikes of pain. We all know the hard way that it is easier to keep pain lowish than to try to reduce severe spikes.

Hopefully you can get your GP to understand that you are asking for help to manage a chronic pain condition. If you haven't had a Pain Clinic referral this might also be beneficial.

Hmm, I need to take a hint with that too. Have not been taking so many painkillers today as this spasm's been easing a bit. Am hurting a bit now though. Tut!

Goalie, I hope you get some relief soon and get somewhere with your GP.

Maggiso, thank you for that, I'll give it a go.

matilda I was just about to come on and say that it's better and easier to keep pain under control with regular meds even if pain feels better, than to wait for pain spikes when it's harder to bring down. But, you beat me to it. Again, we are thinking in the same way

It's so hard going to the doctors again and again, can sometimes feel like you are banging your head against the brick wall. At first, when this all initially became a big problem for me, I was at the doctors weeping into tissues that he handed me weekly. It was hard going emotionally but I could not bear being like that and so I had to do it. And I used MN and the wonderful people I found who unfortunately have experienced similar things to guide me with what to ask for, how to ask it, what is ok to accept as suitable treatment, when it needs to be moved forward for further investigation. Part of my reluctance in going to the GP was what did I want? What did I need? other than to deal with the pain. My thoughts that the GP knew best was crushed quite quickly with back pain, and I had to take control of those things, and then it got easier (not necessarily quicker mind you!).

So, we can help you do that.

where is everyone?

Yooohoooo

Evenin'

Hopefully the thread has been quiet because everyone has their pain under control and have been out enjoying the lovely British summer...?

I had an MSK review today, nothing to get excited about just an MRI and physio referral, keep doing your exercises and keep taking the drugs.
She had a colleague come in at one point and the comments that I heard were 'raging sciatica' and 'some atrophy in the right buttock'.
Now I'm making a point of getting out for a good walk most days, I would say on average it's two miles so I shouldn't have any muscle wastage should I?

I think it's possible to have muscle wastage if those muscles are not engaged as they should be, so although walking a distance over time, you may be compensating for whatever is happening to those muscles by using others, as the muscles are just not working, or as well as they should be (which in turn can cause pain elsewhere). I have significant muscle wastage on my right side, back, hip, buttocks, but, despite not being able to walk well, I am not immobile and have pushed through the pain and kept walking where I can, albeit it slowly (not 2 miles though!) certainly remained as active as I can. But, because the muscles in my back have been busy protecting my spine, I have changed how I walk and so the buttocks and hips don't work as they should have either (although, I did also have several months of doing almost nothing activity wise so that will account for a lot of it).

Not sure if that makes sense, but that's pretty much how my physio explained it. He said the physio exercises will help to build those muscles back up, as target that area. Likely they are similar exercises to what you have been given.

I was going to say hopefully everyone is enjoying summer, but that's mostly going to be enjoying the rain right? the weather in the southwest is insane - yesterday it was pretty cold, and the day before, in the morning, so I put socks on, jeans, top and cardi, fly boots. When I left work at 2:45pm it had become very hot, very close with it, and I was heating up so badly I had prickly heat on my fingers! Today I will wear my birkies, and it will no doubt rain all day

My pain is high. Had two weeks off work to try and get it under control, went back to work this week. Really struggled this week. Pain is reasonable if I am literally doing nothing, or just pottering, but as soon as I start walking, it ramps up. At work I have really been struggling as I am not able to sit for very long at all, or stand for long in one position (literally minutes) so having to change position very often. I have a desk that can raise up and down and a decent chair, but it's a pain to have to remember to keep changing, and means I lose momentum in what I am doing. Also had a meeting with a client and another agency, for two hours. An important risk based interview and getting up and down meant the focus went from him and the discussion to me, so I tried to avoid it. It was not my own chair, and by the end I was screwed! I have literally got up, gone to work, come home and gone to bed most nights this week. Last night I did more as it was school disco so some running around (Ross and I shared, as both children went at different times), but really, I have clawed my way through this week. But, one more day, then two days off, then one more week then 2 weeks annual leave! Keeping hold of that thought.

Hang in there Pavlov you are doing everything correctly so hopefully it starts to pay off soon.

You are doing more exercise than me Cain .. I really should do more

Hope everyone is out enjoying the sun .. we don't get much of it up here .. just lots of rain but its not too cold .. sometime hard to be glass half full here lol

I'm sorry Pavlov, you sound like you are struggling and that meeting sounds like pure torture.
You said to me when I first posted to forget work for a while and I wonder if you should take your own advice? That level of pain must be so debilitating are you sure staying at work is helping?
I researched the new fit to work forms and you can discuss with your doctor how you could return to work but within your capabilities. I know if I went back to work and had to sit through that meeting, not only would I probably collapse in pain but it would set me back so much I'd need the diazepam again.
You could speak to them about reduced hours/workload etc?
I'm just thinking out loud as it were, you obviously know yourself and your company. I feel for you.

AllyPally, I'm trying hard to push myself, I do give up and get the bus home sometimes but I have a belief that if I can just get back to running again everything will slot into place. It hurts like feck to walk and I'm really trying not to favour a particular leg but I don't feel entirely in control of my right leg, almost like I'm walking on someone else's but I'm going to keep pushing until I get my leg back.

There is no sun here, it ranges from a bit of blue sky to thunderously dark clouds but never mind! It's Friday night, I'm feeling giddy and I will be the mother of a 16 year old next week. I'm going to risk a glass of wine in celebration so Cheers all, here's to us, there's none like us etc etc

Have a lovely weekend all.

Summer holidays here now and I LOVE spending time with my lovely children, and no school runs (just work runs for a week which will be much calmer I hope!)

cain I know I should take my own advice. I don't think I should be at work either, no. I have heeded that advice plenty enough over the years, learning from experience that there is no thanks in being a martyr and it can make recovery longer if I rush back/can end up taking longer as I am not ready.

But. When I returned from surgery (8 weeks disability leave, rather than sick leave), I was told that my disability sickness was being managed by a HR rep from the now centralised HR team (moved from a local government trust to civil service). And was told in no uncertain terms that as everything has been done to help me keep working, it was unlikely there was much more that could be put in place, and continued absences as before surgery would mean they would look at whether I was fit to work due to my medical condition and will consider medical retirement.

Boss made it clear that I was not at this stage yet, and any consideration would involve lengthy process of investigation/OH input etc but it's closer to becoming reality, and tbh, should have been already if I were already civil service,or in private company. But the old Trust sort of made it up to suit/easy life/they knew they had other stuff to deal with bigger than this. Boss said this new civil service HR take no prisoners and were tough on long term sickness (which is quite high).

My old HR manager was so much more personable, she knew me, had done for a long time, knew I worked hard, did my job well when I was able, and was doing everything I could to get better enough to work. She gave me plenty of slack to work on recovery. These new HR reps don't know me, they just see the statistics. They can sleep more easily because it's not a person they are firing.

I am not sure if I want to keep fighting. I've been here before as others know, I go through phases of it being too hard, that I sort of would like to just go with whatever fate decides. Then I recover enough to keep fighting and not wanting to stop working, no just financially, but I am 38 so not ready to be on the scrap heap. But, right now, I cannot bear the thought of it being like this for the next few weeks/months, let alone longer. But, as Ross said, 1 more week, two weeks downtime with the children, may be enough to get me over this lapse.

cain my physio said, wrt muscle wastage to build those muscles up slowly, not too much, as they physically cannot cope with too much right now. So don't push it too hard while doing the exercises. Stop when you need to and if you are finding you are favouring the better leg too much, it's time to stop. You will get there, but my physio said the recovery of muscles can take months/years. As ally has also said, can see improvements up to several years down the line. I really hope so myself!

and apologies for waffling. I have ramped up the painkillers this evening. 350 tramadol through the day (morning 150mg modified release, 100mg at 2:30pm, 100mg at 7:30pm), plus 30mg codeine this evening, and 4mg diazepam, paracetamol and naproxen (the last two don't count as they don't goof me out!). So I may well go for a little snooze til the morning

Sciatic pain has been the worst ever pain today, leaning to one side a little, but think that's how the muscles are spasming, but definitely trapped nerve. Some faint numbness coming and going, but nothing significant, intermittent only, but man the pain is unbearable. right into the foot, normally I get little gaps down the leg where there is no pain, not now, all through, but only when walking/standing/sitting. Laying with legs bent is ok.

Sleep well Pavlov, you've earned it.

lol we understand waffle here - hope the downtime helps heaps

Hey ladies. I hope you are all having a good weekend? I am so excited for the summer holidays! I have two whole weeks off, and will manage my flexi to spend more than that with the children. I was initially planning on going to USA for a wedding, but that is called off, mostly because we can't afford to spend thousands on a trip that will potentially mess my back up and that I won't even enjoy because I am in too much pain. Strangely, I don't feel too sad about it. I mean, gutted I am not at the wedding, but in terms of the travelling, heat in summer, my back not being great, feel a bit relieved. DH is going over instead, but just for a week. We are planning to meet the family in Paris just after christmas, so will concentrate on that instead. It does mean I have another week of leave that I can take over summer, so will probably take it here and there rather than another whole week.

I started to celebrate by going on an adventure for cream tea yesterday (a cream tea trail on Dartmoor, 16 or 17 locations to get through!).

My back and sciatic pain remains awful. It's not 'recovery' pain from surgery, i am pretty certain it's not just my muscles in bad shape. Yesterday my leg pain was agony, and after driving for two hours (one each way) my foot was numb across the top and the ends of my middle toes were numb, with some patches in my calf. The pain is coming specifically from a central low point in my back, I can feel where it starts if I think hard about it (did that last night in bed) and is the whole leg right into toes. I couldn't get comfortable all night, and the pain took me right back to when the first year/18 months of pain before my first surgery, when my disc was prolapsed. It's eased after some sleep, but as soon as I start walking I can already feel it flare up again. I intend to do not much today.

The question is. What do I do about this? I am waiting to see my consultant for a follow-up appointment in approximately september time. Last time, I saw the registrar, who said if my pain was the same or worse (it's worse) I would need an MRi to see what was happening as after 6 months I should start seeing improvement following a period of recovery (it will be 9 months in september). I might email the secretary/consultant and explain my symptoms and ask if I can go straight to MRI to save me a 9+ hour round trip for a 15 min conversation which will end in 'you need an MRI'. But, I don't think much is going to be done about it any time soon.

Yes I agree you need the MRI to see what is going on. Still having pain in your legs is not normal after surgery (though the numbness is and I still have numb patches). I am no expert but can be nerve damage from surgery or scar tissue pressing on nerves ... Matilda might be more use to you on this one. Not sure I realised you had surgery before (or might have forgotten as am stupid old woman) .. was that not successful? Sorry all I can give you is tons of empathy .

I met a woman when I was in getting my surgery who had the nerves removed .. sounds good but dunno if it worked and what life is like without them ... better I'm thinking? There is that implant thingy too which is possible?

ally had the nerves removed? wow, would that not mean the leg has no feeling? not sure I would like that either!

I had surgery in 2013 - microdiscetomy, 18 months after my back 'went' from which I didn't recover (before that had intermittent episodes which rendered me on my back for two weeks at a time but almost full recovery in between apart from tiny bit of sciatica, didn't know that was what it was at the time). Diagnosed at the first MRI with mildly broad based central disc bulge, annular tear, end plate damage, schmorls nodes. it was not taken too seriously by the osteopath who ordered it. No surgical target he said. Another one 6 months later as pain continued/got worse/lost sensation in quite a lot of my leg and toes, showed it was worse, and that I in fact had a retrolesthesis (backward slippage of the spine, mildly) and the disc bulge was now trapping the sciatic nerve on the left side. Surgery was actually relatively successful, although surgeon didn't do bilateral discectomy as he felt it would likely result in needing to fuse (too much lamina bone to be taken away), and that it may well be that i will need it fused in the future, but he felt it was better to take a chance with single sided discectomy as the pain was worse on left.

I felt better, much better for a few months, immediately from waking up the pain was gone. But, after about 11 weeks or so (I recall as I had gone bodyboarding just before) the pain started to return in my back, but this time the sciatic pain went down my right leg. Got worse, worse. And the last MRI showed stenosis on both right and left sides, and at L5/S1 and L4/L5, but worse on the right, mild broad based disc bulge on L4/L5 (the one above where I had surgery) and it was to remove the bone that was trapping the nerve canal exiting the spinal cord that I had surgery (and to thin out the ligament). Also identified at that time that the facet joints are degenerating at those levels.

I have no idea why the last consultant wouldn't tell me those things, as it was his last MRI that my new surgeon used to see what was going on. And mixed views on the retrolesthesis role in all of this. First surgeon felt it was relevant as may have contributed to the disc prolapsing over a period of time by the small regular movements. The second surgeon said it was inconsequential.

I wonder whether the spine is now unstable. The registrar did say the pain may be from miscro-instability of the facet joints/vertebra, but unclear if fusion will fix this/help. current consultant didn't seem particularly concerned that the laminectomy on the right could cause instability, where the other surgeon thought it could.

Thank you for your lovely support though. I have tidied the kitchen. Pushed through the pain, now relaxing. Ducking out of a BBQ this afternoon/this evening as I just need a day of downtime. Slept badly as pain is breaking through my night sleep.

what are you doing today anyway ali ? hope your day is low pain and relaxing?