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

oh, and if surgery is suggested (and, even if it's not), especially as it's private and quick turnaround for surgery, do not hesitate to get a second opinion if you feel you need one. Although of course you want a treatment plan that is going to work quickly to help relieve the pain and numbness, you also need to be 100% sure that the decision is the right one, and that you are happy with the surgeon, his plan, the timings.

Hi again folks. I've not been on for a couple of weeks, but had a bad weekend. (I posted a few times - had double bilateral MDs, L4/L5 & L5/S1, nerve root decompression & laminectomy in Sept - 2 surgeries). I have had a significant amount of pain in my right leg again over the weekend, and feeling a bit down with it all. It's so much less than pre-surgery, but feeling a bit down and fed up with it all.

I had to cancel a night out on Saturday, as the thought of sitting in a restaurant for 2-3 hours, and getting myself there and back felt like too much.

Sorry - just feeling a bit sorry for myself. Am on my way to work, and feeling like I just want to turn round, go back home, and curl up in bed again for the day. Boo.

Welcome chocolate.

Hi Casper - you are being a bit hard on yourself - you are still in the early days of recovery (you can improve for YEARS honest). Have some chocolate and a good cry and you'll be fine!

Thanks Matilda - she likes her care home (more than she likes me) so I just leave them to it - actually she was nice to me when she was in hospital (no arguing, no accusations) and even said she loved me (might be a first!) - I hope she stays like that but probably not. Sadly I am the one on the end of the "what happened to my husband" (dead) and "why doesn't your sister visit" (dead) conversations so you can see why she doesn't like me! I am the bearer of bad news ... over and over ... you get the drift lol

Oh dear tough you sound like you are a bit hard on yourself too - chronic pain makes real life very hard to deal with (as does lack of sleep). I am a new woman after 2 nights of ok sleep after 2 of none (waiting for the phone to ring to say Mum died which she didn't phew!). Not ready for another loss yet. Give me a few months please!

Pavlov - small success this am - not sure if I'm done lol - don't want to go into details haha

chocolate, hi. Was going to reply but luckily pavlov has said everything on my list . I guess my main question was also, why ortho? But there is a lot of overlap in this area and of course some orthopaedic surgeons are specialist in this area.

casper sorry it's hard again. Ally makes a lot of sense and is a veteran of recovery. Sadly these problems rarely seem to fully resolve, they just need to be managed. Do I recall correctly that you have a long commute as well as a hectic job? These might be areas I would be looking to see if adjustments can be made. Desks, Chairs, regular breaks to lie down ( constructive rests twice a day?), are you taking meds? Do if you need that. Plus my favourite, heat, heat and more heat.

Ally, just a suggestion for you to ignore, but my understanding of current thinking around dementia ( have I got that right?) is to go along with the belief of the sufferer ie 'where's John?'. 'He'll be along soon, mum'. Would that be worth trying? It's very traumatic to be widowed every day. Or if you don't want to lie just something more general. Anyway I'm glad she was nice to you. Old age is very, very cruel . ( nb granny had Alzeimers and lived with us as a teen and I worked a year in a nursing home before doing my nursing. I kind of loved it though quite possibly set up the start of my back issues from that point).

Tough, what to say? Just so bloody hard. Have a good cry, I say. Why not? I'm going there next month to see yet another Pain Consultant. Is this to discuss the SCC? I am selfishly interested in this even though I don't want one. The docs seem divided on whether they love to loathe them. I hope you have someone with you and the reward yourself with something nice. I was listening to a radio item about The Foundling Museum the other day. It sounds so interesting and is just around the corner if you like quirky little museums. Or just go straight in with the chocolate . Let us know how it goes. Oh, and don't know how old dd3 is but getting into trouble at school for lateness is more likely to be effective than you getting upset. Tell her two warnings and that's it. Grrr, you don't need that ( sending a hug, don't tell anyone )

I would never ignore you and your good advice Matilda

I have gone along with the madness for a quiet life but I am rubbish at fibbing so even a half-daft old lady can see there is something up. I did once tell her I was going to see my sister after visiting her (well she did ask) because I was going to visit the grave!!! I still feel awful about that! . When I am not sure what to tell her I take advice from the staff (who do also tell her about the dead sometimes). Otherwise I just stick to very short visits (she is non the wiser) before hard stuff gets a mention - we have a dozen rounds of "nice weather" and "this is a nice place" before I leg it. If she doesn't know me its even shorter

allypally - how are you taking the Tramadol? I find the 50mg IR can make you feel very icky as you are getting a sudden dose. The 100mg SR are much nicer on the system. It's worth checking that you are getting the 24hr SR not the 12hr ones or you get nasty breakthrough.

I take the 200mg 24hr SR and am very happy on them.

Matilda - I'm not a fan of osteopaths and particularly chiropractors, even though I know some people find them helpful. I've never let them get their hands on me, but I've been given some very silly advice. I also never trust anyone who tells me that I just need to come off all my meds and my back will miraculously recover.

I'm constantly adjusting my meds to stay on the lowest dose possible of anything - I never take what is stated on the bottle if I don't actually need to (although I'm very strict with people about not taking anything when they hurt their backs and try and explain about the importance of keeping analgesia constant not yo-yoing and of not getting spasm by avoiding painkillers and the resulting vicious cycle).

Casper, it's so depressing when things seem to come back post-surgery, but thinking back to mine (L4/L5 & L5/S1 discectomy, decompression and laminectomy) it was really up and down the first 4 months. I got a new far lateral L4/L5 herniation so that was the left-leg shot again, but in general things were much, much better than they were pre-surgery. Took a year or so to really see the end result.

Chocolate - also intrigued as to why an ortho and not a neurosurgeon? I saw an ortho initially for mine and it was a disaster, now I will only see neuros, but I know some are good on this area.

Being a private patient, I would definitely ask for a second opinion (my NHS surgeon - who also works privately - always wants a second opinion before he will operate unless it's urgent surgery, and puts each case before a surgical board each month to make sure there is a consensus on treatment).

With the scans - get them to show you the pictures and point everything out to you. I'm probably weird, but I get my own copy of every scan on a CD from the hospital so I can check things out at home and understand what is going on properly. I don't know if you can do that privately, with the NHS it costs £25 and normally the CD will have a copy of every scan they have to date (or as far back as they have the digital ones), not just the most recent.

Heat is also my big thing.

Tough - good luck with the PC, hope it's a good appointment. I think it's very normal to get depressed and miserable when you have constant pain. Can they give you some meds to help with that?

Tramadol has antidepressant action (why you shouldn't take it if you also that SSRIs) and Lamotrigine is a mood stabiliser as well as antiepileptic and very, very good on nerve pain for some people (I'm one of the lucky ones). It's been my wonder drug for years, but is hardly ever used in the UK.

elf interesting about the 24hr SR. I take 12hr SR didn't know you can get 24hr ones, I will talk to my doc about it as I do get breakthrough in the evenings, slightly less than 12 hours usually, and it's what often has me reaching for the codeine in the evenings. I wonder if the 24hr SR will keep me awake though, as tramadol wires me, which is why I like the SR, as I don't get seesawing of being wired. Might talk to the docs about it, as if I can take a small dose of tramadol I might in time be able to get down to just tramadol with no top-ups of codeine. That would be awesome.

ok confused now - my tramadol just says 50mg (I take 2) no IR or SR whatever that is (immediate or slow release I am guessing)

also it doesn't make me "wired" - it sends me to bed

also taking 100mg Setraline daily - does this not mix with it? Or is that the wrong kind fo ant-depressant?

I see I have a lot to learn!

ally unless it says SR or MR (modified release) it will be normal tramadol. Normal tramadol doesn't specify the type of release it is. And, it makes most people tired. It makes me wired goodness knows why, i could happily have it send me to sleep then I could take it at night, but I can't take it past 5pm (earlier really) if I want to stand any chance of sleeping on it. Any posts you see here from me at 2am or so, are when I am wide awake. It makes me wired also by increasing my need to talk, I have so much more to say, I feel a little bit 'manic' on it. Guess it's just how my body processes it.

If you want to try the MR/SR tramadol, you can ask your GP to give it a try, it was my GP who suggested it to me as I was not happy with the seesawing of side effects/pain increasing through the day.

and re anti-depressents, your GP will/should know what you can/can't take with it. However, it might be worth taking a look to see if it's an SSRI (something seretonin re-uptake inhibitor), as it could explain why you were shaky/sick with it, if it is one that shouldn't be taken with tramadol. If you are unsure, ask your GP to double check.

It's because they both increase the amount of seretonin processed by the body that it's not good to take together, as too much seretonin is not good for you. Also, it all depends on the doses of meds, because nerve meds and diazepam etc also increase seretonin. I check with my pharmacy friend if I plan to take more than 3 things that are mood enhancers, she is usually happy for me to take them because the doses are low.

I just checked the contra-indications between tramadol and sertrazine, which indicates that there are serious contraindications. I would suggest, don't take any more tramadol for now, and call your GP for some guidance. If s/he says it's fine to take, then you can restart if you feel you want to/ask for SR to try if you want to.

ah I was just off to check and you beat me to it - thanks pav - I only had a few left but won't take any now - stupid GP! Wow nearly forgot MN rules and put an "x" there - I'll be all "hon" in a minute - how embarrassing!

I have a problem with seratonin (I get migraines) but never remember if I have too much or not enough doh!

wow pavlov just checked out seratonin syndrome and I had most of that though put some of it down to coming off HRT patches and stress (Mum's heart attack, sleepless nights, etc) ... I could have died! Eek - this place is better than my GP clearly! Now you are getting a ((((hugs)))) for sure

Terrifyingly I have been on full strength tramadol and 150mg sertraline for over a year?!
I have stopped the sertraline now as I felt I was taking too many drugs, but jesus how scary is that? I love my GP but I do wonder about him sometimes....

Slow release Tramadol is so much kinder than the instant release in terms of not making you feel icky and not so much break-through pain.

For some reason, doctors don't often notice the issues with combining an SSRI with tramadol, but it can be a really serious issue.

The other one they all seem to miss is that most anti-epileptics are also anti-folates. I take 5mg a day of folic acid (you need to get it on Rx) as I take lamotrigine. Much as my GP is a star, I had to point it out to him.

Tough - have you had epidurals before? I found them quite good but sadly they wore off after 3 days the first time and 24 hours the 4 times after that, but lots of people get months and months of effective pain relief with them. Really hope they work for you. I had facet joints done at the same time, so may have been the combo that meant it wasn't good for me.

Interesting others can't sleep.

You would think that a combo of slow-release morphine, tramadol, lamotrigine and oramorph just before bed would knock you out completely... instead I'm a total insomniac and even if I do fall asleep I wake up endlessly - and not because of pain as I'm generally pretty pain-free lying down on a memory foam mattress with a heat pad.

Sadly not sleeping doesn't make it any easier getting up in the morning :(

With regard to prescribing errors the people I do feel very cross with are the pharmacists.. It's their job to know about all the meds and interactions. Gps can't know everything. I was prescribed a massive overdose of fentanyl patch and three pharmacists let it go past. It is very important to be on the ball. And I didn't know that about anti epileptics. I wonder if same applies to gabapentin? Actually, I suppose I did know in that pregnant epileptics had huge doses of FA.

Tough did they talk about the SCS? An epidural in June sounds a bit lame. So far away even if it helps. Doesn't sound as if you had a great experience. So annoying, it's such an effort and we invest so much hope in these appointments.

Elf I take a tramadol150sr mid morning around the cocodamol and it helps, I think. Amytriptiline definitely helps me sleep even though it's a small dose. I hate sleepless nights so much.

pavlov, progress reports, lovely? Or is that driving you mad, trying to analyse every twinge? Probably better evaluated in weeks/ months than days.

I agree pharmacists ought to be doing rather more than just warning you that long-term NSAIDs might affect your stomach (all they've ever done to me) and pick up on the folic acide and SSRI/tram combos.

Sadly ami is off limits to me as it makes me severely hypomanic even at 10mg. Rather fun imo, but apparently makes me unliveable with in everyone elses! Was rather effective though and I do have a stash in case I'm ever out of other options.

It is quite handy having my father for those moments... 'so, talk me through the medicine cabinet' (although cabinet is a bit of an understatement, drug larder might be better description!)

scs?

Epidural - I've heard such different things. They tried doing mine 2 weeks apart in the hoping of tricking my brain into rerouting pain pathways or something (sounds a bit odd to me but will try anything non-drastic once).

I think a lot depends on what is actually wrong in the first place. My treatment has all been about staving off surgery for as long as possible, whilst always knowing that it was on the cards. They'd hoped to get me over 50, but we haven't done that well. So I may not have been a good candidate in the first place.

Go in with an open mind - the whole back pain malarkey is so individual even with the same thing.

I have cried coming out of hospital appointments more often than not. Never enough time to ask all the questions, especially when they throw something new at you (I try to read up on all the possibles before I go so that I can ask the right questions). There is nothing worse that being told that they a) don't know what is wrong or b) know and have nothing to offer.

Actually there is... seeing some up-their-own-backside physio who tells you they won't order an MRI because it's all in your head and you should stop taking drugs and see if you can get some CBT. I have never been so rude to a medical "professional" as I was to him after he said that. Makes me shake even thinking about it.

Being depressed is a very normal side-effect of chronic pain, but you can end up in the catch 22 where everything is played off against the other: your pain causes your depression and your depression makes the pain worse. Sometimes you are actually just depressed and the fact you have chronic pain has bugger all to do with it, and sometimes the two are connected. Can cause issues in getting help with either.

The suicidal one is interesting. I know if you see a GP with depression and they ask that question, the answer 'yes' means that you can be fast-tracked in the system rather than languishing for months on the waiting-lists (I will probably be in trouble for saying that, but it is true).

Tough, sorry didn't mean it's no good! just a long way off and I thought ( mistakenly?) that you'd had injections before that didn't help. I've had so many with no real effect but others really do benefit. I kept getting told that if they 'hit the spot' I could then have an ablation which could last much longer. I've never actually met anyone who had this. One issue for me is that my back pain is at least as bad as the leg pain and injections seem more aimed at back pain. Facet joint injections and nerve root blocks didn't do a thing. Apparently bad scarring doesn't help, either. So let's keep fingers crossed for you. Re the SCS I was worried about scarring (and anyone touching my back) so this seems a sensible approach.

elf, what happens next in your fight? How does this kind of dispute ever get resolved? You must just want to get on with it.

Grrrr, bloody iPads !!!!s getting randomly inserted.

And no, never asked if suicidal, I don't think? Maybe asked about mood, though. I think it's part of their overall assessment. But since we are bound to be depressed about our situations to some extent what do they hope to do about it?