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

casper terrible news IS better than no news. As you can put in plans, prepare yourself for what is/may come along in the future/know what your future may be like and work with it, figure out treatment/pain management options etc. And it may well be something that can be largely fixed, but limbo is the worst place to be.

cain if you are at full initial dose, check your side effects are manageable before you titrate up again. I found a good two weeks of feeling terrible side effects before I started to feel even a little bit of nerve pain relief when I took nerve pain meds. Unfortunately for me, even though they worked, I couldn't manage the side effects well enough (most people are not so sensitive, I was unlucky). It's horrible to be going through, and saying to give it time doesn't help you now, but really, in a couple of weeks, the meds should be doing their job and the pain eased even if only a little.

Hi all, thanks for your thoughts and comments. I hope you are having a good day? I'm sorry I don't have any knowledge to offer but am sending positive vibes and much sympathy.

I called the surgery again yesterday afternoon to get the response re upping the Gabapentin and adding Amitriptyline as recommended.
I got a very snotty message delivered by a receptionist saying "Dr W says that you have already seen Dr X and Dr Y who have both told you as you are only on 100 x 3 p/d at the moment, you can up the dose to 300 x 3 p/day."
I explained that I was already on 300 x 3 p/d as per Dr Y and that my request that morning was to see if it was possible to up it further. She went very quiet on the phone and then asked if I could come in.
So after 40 mins of standing in the waiting room I got to see Dr Z!
He was pretty good and said clearly Dr W had not "read my notes carefully".

He said I could up the dose to 600x3p/day and that although Amitriptyline would be better than the Diazepam he didn't think I would need it with the higher dose of Gabapentin. I hope he is right. He did however, give me a shed load of paracetamol on prescription which will mean less trips to the chemist/supermarket etc.

Although I still woke in pain at 4am, the codeine and paracetamol seemed to work quicker than it has been so I was able to snooze until 6.30. I was also able to do all the physio exercises which I couldn't before. It feels like progress which is good. I've also discovered that squatting right down so I'm sitting on my haunches eases the leg pain a bit so it's bearable.
As for side effects, I'm definitely more dozy, quite spaced out and my legs are not my own but thats not entirely unpleasant.

Another question if I may?

I'm sorry to get into bodily functions but although I've been drinking loads of water, I've only 'been' once in the last week after eating a bag of liquorice, I'm now working my way through half a kilo of prunes... What does everyone else do about the constipation?

Lactulose. Big slug at bedtime generally sorts me out but if it's been a week it might take a few slugs.

Be careful with going so fast onto such huge doses of gabapentin. You aren't driving are you? It's a shame your GP doesn't agree with us about the amitriptyline because I only need a small dose to get me sleeping pretty well and before that I had some whole nights without sleep. See how it goes and good luck. Definitely right about paracetamol enhancing codeine...how come you don't have cocodamol? It would reduce the number of pills you are swallowing.

Happy days.

Good grief no, not driving. I wouldn't dare. Plus I still can't sit.
I suppose as I've just had a large prescription of codeine last week he wouldn't want to give me access to too much hence the separate paracetamol.
I still have a few diazepam so if I need something to help me sleep when they are finishespd I'll go back and ask again about the Amitriptyline.
Thanks for the Lactulose tip.

Knock knock -can I come back?

Formally known as 17leftfeet (I think, several name changes later)

Feeling rather sheepish and embarrassed that I sodded off these threads when I went into remission from my MS -trying to pretend I was normal

Fat chance!

I have no decent meds because I haven't needed them for months and my legs are currently on fire and I can't sleep

Am I forgiven?

Morning Emochild
I hope you got some sleep? What about out of hours Dr to get a prescription for something to help?
There's nothing wrong with a bit of denial!

I hate the out of hours doctors

When you go in asking for tramadol and codeine they start treating you like an addict

I'm going to tough it out with some cocodamol today then try and see my doctor tomorrow

Ended up sleeping in a chair, just could not lie down last night

Welcome back Emo .. we are pretty familiar with chair sleeping in here .. hope you enjoyed the remission and sorry you are back

Totally agree re the addict treatment .. bastards!

Sounds like you are doing a bit better Cain ... I take Laxidose and Doictyl daily and top up with Senna (I like the Dulcolax one) when I take codeine .. hope it helps!

Just to report back...prunes are extremely effective.

I'll maybe just have a few a day now though...

hahaha yes prunes .. or beans

I love prunes anyway, so they are a great 'go to' for me and a bit of prune juice is good too.

Strangely, my bowels appear to have settled down, maybe used to the dose? not sure, it's mostly when I add back in lots of codeine on top of tramadol that I slow down. Then I add prune/juice in and a bit of movicol. I tend to add these in if I have not been for more than a couple of days, as I have had two bouts of horrendousness. First time, it was a horrific ordeal. And second time, was post op, so to be expected and not so horrible (but still 10-11 days )

emo course you are forgiven, it's easy to not post when you are not thinking about daily pain as you try to get on with life. Glad you had remission. How long does the remission/relapse cycle last? or is it unpredictable?

I also don't like OOH. I had one time, the doc was lovely as he also had a bad back, so after quizzing me on symptoms and how I coped with certain things (trying to get some techniques I think!) he let me have a diazepam prescription faxed to local pharmacy, not lots, but enough to get me through a couple of days. it was bank holiday I think. On a sunday. He told me sundays are common days for diazepam due to being the day after clubbing and drug excesses and that was why he was being super cautious. Another time, the doc on the phone made me drive (DH drove) to OOH surgery near the hospital, 30 mins away, despite me clearly telling them I could barely walk. He took one look at me, wrote a prescription out there and then for diazepam (muscle lock all the way up the spine), and his computer wouldn't let him print it. His manager said it was because he was giving me too many (21), she said I could have 10! It was a friday and needed to last until monday 2x4mg x 3 daily, couldn't add up! He managed to give me more, saying after she left (that won't be enough will it?) but not many more, 14 I think. What did she think I was going to do with 21x2mg tablets? I clearly needed them myself and there's no market value in 2mg tablets!

Hi Pavlov

It's quite unpredictable

My last relapse was 14 months, remission was 9

Some people can go years in between relapses, my longest was 4 years but the more relapses you have the more frequent they are and the longer they last

I'm hoping to catch this one early and get some steroids before I get too bad

Hello Emo but sorry you have a relapse. I've been discharged from my lovely hospital physio - I've had my 4 sessions and now have to wait for orthopaedics. Although physio helped a little it tends to make me sorer for a while - now right arm/hand has joined in with my two legs ( 'tooth ache' and fizzing) so the good news is my left arm is working pretty well! I am cooling the sore parts of my back and warming my legs/arm in turn! Actually 'onfire' is a good description Emo, it feels similar to a scald on my arm - painfully fizzy.
If anyone else gets groupon adverts - has any one tried the reclining leather arm chair and footstool on offer at present? Is it suitable for a smaller lady? Is the lower back support good? I know I really ought to save for a proper Stressless one (3 sizes and £££s) - but need to win the lottery. I am getting on better with my second hand Stokke kneeler stool - its just the right height for me but the rest of the house hold (all taller than I) hate it and it takes up lots of extra space as noe we need 2 chairs to one tiny computer station!
Cain we use Movicol in our house - the standard version (but not the kids) is available over the counter.
Hope people are a little better today.

mags how do you feel about being discharged? was it helpful for the sessions you had? I haven't seen those chairs. I am surprisingly happy with my Ikea Poang chair, it reclines slightly, and I have a footstool with it. It's slung in the bedroom right now as we are a bit cramped in the front room, but we are getting rid of a sofa so I can return it to it's rightful home as I am not able to sit comfortably on the sofa and I am finding i go to bed so I can lay down (more comfy than laying on the sofa). So, maybe this way I can get to stay up more often. So, in a long winded (as usual for me) way, I can't comment on those chairs

I had acupuncture again today, by NHS physio. It really works! Doesn't last long, but it has worked enough even today to let me tidy the kitchen up (i am a bit obsessed by a tidy kitchen right now and DH isn't the tidiest, despite being a chef, and it does my head in when I can't clean it/organise it properly). Sciatic pain is bad now though. Oh well, least I can sit in the kitchen for coffee without pulling my hair out in the morning!

I have been utterly exhausted this week. I took the week off work as my back spasms and leg pain have been so high I just needed a break from trying to do everything. Walking, pretty much anywhere is hurting so much and causing significant spasms in my back, so needed to just stop for a bit. But, so tired! I am hoping it's the weather, as I have had a couple of naps this week which is so unlike me, and this morning I got up, as soon as the children went to school, lay on the sofa and went back to sleep until DH reminded me I had physio at 11am! Woke feeling really groggy/foggy headed, sluggish and haven't been able to shift it. all my body hurts/aches. but least the back pain is calmer for hopefully a few days before the acupuncture wears off.

emo meant to say, hope this lapse doesn't last as long as the previous one.

Hi Pavlov, big hugs to worse pain?mim glad you decided enough was enough and took the week off. Remember it's better to take a chunk of sick leave than lots of small bits when you decided when to return. I know how very difficult it is for you to call in sick so it must have been hardcore bad.

Isn't it funny how other people just don't get it how you still need to tidy up, do the washing and so on? They say, don't do that, rest if you are in pain. But it needs doing and living in a mess does my head in more than pain tbh.

Enjoy the sun everyone.

matilda it's so true about mess doing our head in. I feel so so awful if the house has fallen apart, so when I lay there unable to do fuck all, I feel even more stressed. As try as I might, I cannot be comfortable if the house is festering.

I have felt reasonable today. So, I have cleaned the internal doors. My word they were filthy also cleaned the dado rails, and the radiator in the hallway. Front room is reasonable, clean if not tidy, and means that if I need to crash after the summer fair today at DC school I can do so in relative calm. DH and I have also been in our yard and it is looking a lot like a proper urban garden now, really happy with it. I mostly did supervising and directing

I am undecided about Monday. Every time I think I am making some progress I go back a step and the pain ramps up again.. I think what did it for me what being so bent over and people commenting, I felt so embarrassed and it went on for days, and in the end I was trying to hide how bad it was by avoiding walking when I could, staying at my desk, going to the toilet when no-one was around, not walking into the staffroom at certain times when more people would be in there. I realised by Thursday I needed a break from trying to be 'normal' working, home life, etc, thought Friday would be enough, but by Monday I was still bent over.

I find an unclean, messy house really brings me down too, it can build up at times if you're really struggling with pain and it makes you feel worse than useless. It doesn't help that DS15 comes in like a tornado of filth!
Being able to do a bit is very satisfying and mood lifting.

Can I ask if anyone is familiar with this strange symptom that I have?
I have permanent numbness down the outside of my right calf, occasionally it feels like there is something crawling on my leg there. I also have numbness/pins and needles in the last four toes of my right foot.
Has anyone had this?
I'm not sure if it's the pressure on the nerve or the Gabapentin.

The Gabapentin (600x3pd) seems to be doing its job on the sciatica, the pain is at its worst first thing but I am getting more sleep. I still can't sit for longer than 30 seconds as the pain builds in my back and leg. I'm only taking one codeine at a time as the paracetamol really does make a difference, so thanks for that tip.
Ever so slightly worried that one codeine is no longer making me so spaced out so am trying to take as few as possible as I may be a codeine addict!

cain* that numbness are classic nerve impingement symptoms - it follows the path of the sciatic nerve, think L5/S1 but not 100% sure of which level. I know that I had calf numbness and toe numbness, last two toes, and around my ankle. I only ever had the skin crawling (well felt like water trickling down my leg) after surgery. It may be that the impingement is betting worse (disc further prolapsed/more bone grown for example, depending on what is trapping the nerve) or that it was there to some extent but masked by the pain, and now the pain is reduced by the gapapentin, it highlights the numbness - gabapentin won't fix whatever is going on, it just shuts of the pain receptors from the nerve to the brain, so whatever damage is going on is still happening, it won't fix numbness.

What this means is that you need to return to your GP asap/monday and let them know what's going on. How long have you had these symptoms? I can't remember (and it will take an age to scroll up as my computer is set funny so last post is a the top!) if you have had/due to have an MRI? If you have no MRI planned, you now need one, asap, as the longer the nerve is trapped with numbness, the more likely there is that there is permanent damage - that is not to say there is always permanent damage if left too long, but the success of any potential surgical intervention if that's a route to be considered, is lowered with time. I am not sure of the timescales (used to know, forgotten), but after I think 1 year, the success/chance of full recovery reduces significantly. I personally have some numbness on my left calf, not full numbness, but altered sensation on the top of my foot, back of my calf, tips of my big toe, but most of the numbness went away several months post surgery (first surgery - left sided discectomy, now my problems are right sided).

So. basically, get this looked at asap. And, keep an eye on any worsening symptoms - look out for red flag symptoms - caudia equina is a medical emergency and needs immediate A&E attention, 999 would be appropriate if red flag symptoms appear - these are: numbness or pain around your back passage, genital area, buttocks (saddle), or change of sensation in those areas, pain, loss of control of your bowels or bladder (retention or inability to hold it, although some meds cause constipation so if that comes on suddenly with other symptoms, or if you are in doubt, presume it's a red flag and get it checked out), also numb entire foot/foot droop/if the numbness increases in your foot/leg.

I say this because once there is numbness, it means it's not likely just an irritated nerve, and so until you know where the nerve is trapped you don't know if it will get worse. Reality is, as time progresses CES becomes less likely (but not impossible) as it is usual acute (although can on occasion be low onset). CES is rare, but not unheard of, and is something that those with nerve problems and back pain must be aware of.

cain also, I can give or take codeine, but no longer get the spaced feeling (shame). And, tbh, right now, sounds like you need it. You need to, to some extent, try to let that worry about addiction go for now, as this ain't likely to disappear for a while.

I spent a long long time fighting pain meds because I was worried about becoming addicted. I eventually accepted I needed them regularly to maintain my pain as it was seesawing up and down as I dipped in and out of them in an attempt to minimise the risk of addiction. Now, I am probably fine with codeine, although I take it most days, I don't take it every day and could stop that with no problems. But I fully expect I would be addicted to tramadol should I need to stop using it. However, I know that my pain is not going away any time soon, and I will cross the bridge of withdrawing if and when that time comes, as I won't also have chronic high end pain to deal with too.

The main drug I am ultra cautious about is diazepam, because it's super addictive. Actually, if it's taken properly, at a low dose for a period of time, the withdrawal is not too horrendous I have heard, in that it's quite short-lived, but that period is not great, and I have worked with clients (drug related work) who have struggled with diazepam addiction, although their usage levels were in the 20-30mg per day minimum, for months.

Pavlov me too, I've got an appointment at the hospital on Tuesday which is quicker than normal and my GP sorted out some tramadol for me

It's better pain wise but my left foot is dropping again

I refuse to get my stick out though until I actually fall over stupid bloody walking stick grr

I really get what you are all saying about mess

For me it's a sign of what I can't do and I can pretend i'm ok as much as I want but it's a clear and visible sign that i'm not ok

Personally I don't even notice the house when I am down .. it can fester away lol

I have had numbness in my left leg down to the foot for years now since surgery. I assumed this was normal and nothing to worry about? Also get fizzing/buzzing in my leg and foot - like I've been plugged into the mains. As regards bladder/bowel I can be double incontintent anyway and take a variety of drugs (bowel and painkillers) which means I am constantly swinging between total blockage to total incontinence .. how would I even notice if anything else was going on? I have had various tests over the years and basically was born with faulty wiring down below as no other physical cause has been found and I stopped because I was sick of all the very intrusive and humiliating tests. I'd rather just manage it as well as I can. I've assumed the leg thing is surgery damage/long-term slipped disc as opposed to anything further aggravating a nerve - am I wrong? Not sure I'd let them do any more surgery anyway so probably just keep my head in the sand on that one.

Thank you for that Pavlov, I have an appointment for assessment later on this month. Couldn't believe it was a 3 week wait but that was the earliest one I could get.
Everything seems to be as normal underneath although I've had a couple of prune related dashes. I'd rather things be that way round though as constipation means I tend to be on the pan for longer than my back can take!

Thanks again and have a good weekend all.

Pavlov, thanks for asking (regarding discharge from physio). I suppose I am disappointed that physio can't help much. She did seem to understand that exercise makes the pain worse - whilst everything I read suggests the opposite. Perhaps its the modic changes.
Cain I have similar symptoms but slightly different location -with numbness down the inside of my calf and my first 2 twos affected. But I agree it needs checking out.
Hope everyone is having a better week end.

I've not been here for a while as I was having great success with my pilates, a few ups and downs but so much better than I was, thankfully

I've just popped in to ask if anyone has any advice about what I've been told is nerve pain stemming from the fractures in my thoracic spine. It's in my ribs, mainly on the right side. I was given amitriptilene at the last flare up but don't want to take that if I don't have to. I did have one last night but the pain's worse today than it was yesterday. Heat helps so this evening I'm going to put the heat pad on. Does anyone know if there are any exercises I can do? My pilates teacher is away at the moment so I can't ask her. I've just been for a very doddery walk but that hasn't helped.