Back to Back Trouble. The Back Pain Support Thread.

[Matildathecat]

This is a support thread for people with back pain (that does not even cover the description of hell that back pain causes). It's for all types of back pain, for long term posters with chronic pain (including those on the upwards journey to recover), short term advice through tough acute episodes and all the in betweens.

We moan, winge, share successes, guide each other and hand hold through the maize of a million medical routes and options, treatments, investigations. We internet shop as a form of pain relief, drink wine, take strong painkillers, eat cake and we go through lots of heat packs!

We don't always have the answers but we do have a lot to say about it all

Here are the links to our previous threads:

//www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
//www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues
//www.mumsnet.com/Talk/general_health/2023274-More-Terrible-Back-Stories
www.mumsnet.com/Talk/general_health/2049637-Back-Again-Back-Pain-Support-Thread?msgid=47419209#47419209

And some other useful links and info:

www.patient.co.uk/health/cauda-equina-syndrome-leaflet

We have done the hard work for you and learned about effective drug combining. Using NSAIDs, a stomach protector, paracetamol with or without codeine (it enhances the codeine), nerve pain meds such as gabapentin and/or amytriptiline can all be more effective than simply taking huge doses of opiates. Of course most people won't need all of this but for severe prolonged back injuries this is helpful to know.

Heat, gentle exercise, TENs, medication patches, diazepam and accupuncture, we've tried them all.

So if you are suffering come and join us, were a social lot.

[Matildathecat]

I taking both. 600mg gabapentin x3/day and 20mg amytriptiline at night. They both make me a bit sleepy. Gabapentin did initially make me dizzy and a bit spacey but that wore off. It definitely affects my memory. But they do help nerve pain and they both take some time to build up in the system. The dose should go up very gradually to avoid major problems.

I am just about to try switching to pregablin instead of gabapentin to see if it causes less forgetfulness and general stupidity. Some people can't tolerate these meds at all, for some they work really well. Needs several weeks to evaluate IMO.

[pinkkoala]

I dont get any side effects from the amitriptyline, but have heard that gabapentine can have some nasty ones.
now today I only took paras when I got up and naproxen then havent neededanymore painkillers today, but took naproxen and amytriptiline tonite, that is unusual for me as have in recent days needed paras every 4 hrs, I fo keep getying pins and needles, I was told that meant the nerve was hesling is that true.
I have 100mg gabapentine to take then build up to 200 then up to 300mg, I can take 7.5 mg diazapan in one dose and that hardly has any effect, just makes me bit relaxed.

[PavlovtheCat]

pink there are lots of people who recover completely from disc prolapse. Problem is, by the very nature of this thread, you are not likely to come across any here, as those who have healed well don't need anywhere to moan or get support through the shit!

Both gabapentin and amytryptiline are good nerve drugs, don't be too scared about taking them. Some people (like me) can't tolerate the side effects, which take a good 2-3 weeks to ease so give them time, most people will find them manageable after the first 2-3 weeks.

[PavlovtheCat]

I got my worst side effects from amitryptyline, not gabapentin, so while they can sometimes have rotten side effects, it varies so widely from person to person how the meds affect them. Some people can't take opiates, others are find on them, and a range of degrees of side effects in between that.

I would definitely say give them a go.

[pinkkoala]

How long have you had a bulging disc pavlov and how far are you with treatment.
I dont seem to have any side effects from amitriptyline, so far the one drug I canttake is co codamol. My nerve pain seems to have moved further up my thigh into more of my bum cheek. Why do we have good days and bad days.
have you tried the injections, how were they, were they painful, did they work.

[pinkkoala]

When is the best time of day to start taking gabapentine, I am bit worried as have school runs etc. Sorry to ask so many questions.

[PavlovtheCat]

I had a disc problem for years now, almost 3 years. I had a discectomy last year (june '13) due to my left sciatic nerve pretty much stopping me using my leg. Pain, numbness, pins and needles, the pain pretty unbearable, but even within that, I got periods where it was entirely bearable, and I would think 'oh yey! on the mend!' than a further lapse, new MRI to show it was worse. But, I am a minority.

My surgery was, really, very successful, in that it untapped the nerve, and I woke with significantly less pain in my leg than I went to sleep with when I had surgery. I recovered really well, little difficulties, some steps forward and back until about 11 weeks onwards and I then started to get leg pain again, then back pain, then Boom, worse.

The disc has re-prolapsed, but not significantly, so it seems, although I have endplate damage (the part of the vertebrae that touches the disc), and the disc is sick/dying too, so much of the pain is probably from that.

However, worth mentioning that I also have a very slight vertebral misalignment (retrolesthesis) which may/probably did contribute to my prolapse and possibly to this second one.

Fusion is the only next step for me really, but my surgeon is not proceeding, doesn't want to to do it. So off to London for me on 16th October to meet with a specialist for a second opinion on that. As, no fusion, no improvement for me long term.

RE; Injections. Now, I had one almost 3 years ago, at the beginning of my problem. I got about 2-3 weeks from this. Nothing spectacular. But, just had it done again in August, after much fighting as docs said it won't work, and it was marvellous. It lasted about 5 weeks? With some deterioration within that, but not sudden, til near the end then it sped up leaving my system. But. 5 weeks is better than a poke in the eye!

Unfortunately, I am largely back to where I was about 3 years ago in terms of pain levels. And I can't take gabapentin, pregabalin or amitriptyline, as the side effects are far too strong for me. Shame as they are fab, amitriptyline in particular almost completely got rid of my nerve pain, over about 2 months though.

Take the gabapentin at night. It will make you drowsy. Take it, I would suggest, around 6-7pm to reduce any 'hangover' the next day. And give it at least two weeks for the side effects to wear off.

[Matildathecat]

Great advice from Pavlov. As she says start the gabapentin. Evenings, then gradually build up to three times a day. 100mgs is a very, very small dose so you might not get any side effects but equally not much benefit,meither until the dose is increased. I started on 300mg capsules and very gradually increased to three times a day ( over a couple of weeks if I remember correctly), it did make me a bit sleepy and zen but not dangerously so. It did, job ever, take me a long time to build up to 600mg x3 per day but that dose does give me a lot of relief from my leg pain. Sadly I also have terrible back pain as well and that isn't helped so need the cocodamol or tramadol as well.

As Paovlov says, most people do get better. Having said that most will take a look at their lifestyle and make adjustments. Ie my brother gave up rowing. You really might want to be asking your employer for some kind of less physical role in the long term. We are an unlucky group on here because we mainly have persisting problems. Nearly all of us have disc problems so we do understand. We just can't give you the answers you are searching for because it's like asking how long is a piece of string. Sounds as if you've had a good day pain wise. I think there is no answer why but good days and bad days are absolutely normal and part of this injury. Please, please don't up your activity too much on a good day. That is a classic mistake. The fact that the pain is gradually moving up your leg is good news so keep the faith and in the meantime take the pills.

[aliciagardner]

Hi Pink,
I'm not a regular on this thread but I did have significant back problems last year (prolapsed disc starting with sciatica in pregnancy and worsening to horrendous proportions after the birth of my DC - ending up entirely bed bound, constant searing unbearable pain in my bottom, leg, ankle and foot, loss of feeling in the whole of my left leg and foot, gabapentin (after amitriptyline did nothing), oramorph, ibuprofen, paracetamol - though I was still in constant agony despite the medication). I am lucky enough to have private medical cover through work and had a microdiscectomy. I was coached through this horrendous time by Pavlov (hi Pavlov! I have namechanged but hope you remember me!).

Anyway - reason I'm here is your other thread popped up in active convos and I followed through to this one, which I sometimes read. I wanted to let you know that my surgery was really successful and though I am much much more cautious with physical actions these days (no heavy lifting, no prolonged sitting, careful movement, etc) apart from the odd twinge I am almost back to normal. I understand that you want to avoid surgery and that's obviously the best way to go if you can avoid it - but if you can't; just want to say that it worked very very well for me. I honestly thought I'd be unable to walk permanently when my pain was at its worst last year. Now I still have some nerve damage (as the prolapse was so severe) but am hopeful it will get better with time.

Hope this was helpful info and good luck to everyone on this thread. I know just how you're feeling and wish you improvement so very much.

[pinkkoala]

Matilda thanks for the advice, I do make the mistske all the time of good day so I go like a bull in a china shop and do loads, then straight back down again the next day. Is there anything at home that you dont do now that you did before, do you all have supporting partners. I originally was unable to put foot on thr floor in the beginning snd had pain in calf and all the leg, but now mainly top of thigh and bum cheek. Do you still rest it on a good day and how do you know when you should stop, I am the type of person that is never still and always on the go, now it seems to have stopped me in my tracks.

[magso]

Bassett I don't think it was a pillow exactly I was given - more a padded head rest shaped cushion. It was comfortable and I could breath fine despite having breathing difficulties laying flat. Hope it all goes well.
Hope your evening out was lovely Matilda and you survived it well.
Pavlov, I like your blog post. I thought it was very positive, not moany at all. We had to give up camping (and mountaineering) when ds arrived - he has autism and was until recently a bit of an escape artist, with no understanding of real dangers. We kept on walking with friends (extra eyes and legs to keep ds safe) and even stayed in bothies on occasion. But after I became ill (ME) we discovered campervaning and are currently doing up an old campervan. It means I can rest easily, sit to prepare food whilst watching out of the window, and we can park next to beaches or woods. We have not had a trip in our own van yet though- which might be less comfy than the modern one we hired!
I thought I would try out some of the posh (thermacare) back heat wraps - half price in my local co-0p pharmacy. Might work well for work.

[Matildathecat]

Pink, my situation is different from yours because I had a failed discectomy and have both nerve damage and severe scarring around the nerves which means my condition is permanent. So yes,mi have some better days but I do have pain every day, just sometimes less severe than others.

If you read up on pain management you will learn about pacing which is basically always working below your pain line and very gradually increasing your activity with lots of rest in between. It does help reduce flare ups but of course sometimes life gets in the way and activity or travel is essential and pain is the inevitable consequence.

If you can find meds that help, then use pacing, mindfulness and gentle exercise you will find a way of keeping the pain tolerable until the disc heals. It's easily said and you will still have good days and bad days but they should begin to be more level.

[pinkkoala]

Thanks matilda, I have tried gabapentine and dont think it agrees, felt awful, sick, wobbly, tired. Out of all the drugs I have tried that has been the only one that hasnt agreed.
do you think nine weeks is still relatively early to have got rid of all symptoms, the calf pain and most of thigh pain is gone, but when I get up in the morning I reach straight for paras as for an hour I am in alot of pain, then gets easier.
there are two of us off work with the sane injury, the other lady is housekeeper and has been off ay least a couple of weeks longer than me, also another care assistant had now gone sick with knee injury, surely we cant all be doing something wrong.

[pinkkoala]

I also cant understand why my back has alot less pain and is alot more flexible but I still have sciatic pain, is that normal.

[PavlovtheCat]

pink just quickly. the side effects of the gabapentin is absolutely normal. It's not that it doesn't agree with you, it's a very common side effect(s) and absolutely normal/usual for those to occur. You need to take time. One of the good things about not being at work is this time you have, although it doesn't help with doing school runs and being a mum which doesn't stop.

If the sickness feeling is unbearable, ask the doc for some anti-emetics, that will help until this side of it passes. The absolute worst side effects will pass within a few days, such as the sickness, but you will need to expect much of it to ease slowly over the course of a couple of weeks. Give it time.

To everyone else. talk soon, got some real life shit to do then sleep. fucking knackered.

[PavlovtheCat]

and sciatic pain is also very normal with no back pain. The pain comes from the nerve being damaged - so it may be that the nerve is not trapped at the moment, and so the back pain is eased off, but the nerve will remain damaged for a while, takes time to repair nerve damage from being trapped, it needs to recover. That can take months.

[PavlovtheCat]

to alicia! So good to hear you are doing ok!!

[PavlovtheCat]

pink really, sorry to be so harsh, but you really, really do need to get your head around the fact severe disc prolapses will take months, several months, to heal. 9 weeks is nothing. It's something you will need to think about in terms of your work, for the time being. You sound like you are definitely on the road to recovery, but you need to be confident in the future, while accepting that for now, you are not recovered and it's not gonna suddenly happen in the next two weeks.

Read the Sarah Key's Back Sufferers Bible from cover to cover while you have the time, some useful stuff about exercises etc.

[pinkkoala]

Pavlov you are not harsh, its just me panicing, I am always the first up and last to bed, and I was always active, doing stuff, my job was physical and I loved it, but this disc probkem seems to have slowed me right down physically and mentally some times, as I think I am improving then get a couple of really bad days. I feel at times that I am not being a good a mum as I was, somtimes I am grumpy, sometimes I dont feel I give dd enough attention as I am in pain. And you cant pkan anything as sometimes you could agree to do such and such then wake up having a bad day.

[Matildathecat]

Pink that's why you are in the right place here with is old birds; we were all active! busy runaround girls until D r Disc came knocking at the door out of the blue. We all understand and all go through the same shit every single day. Pavlov is right, you are looking at months before this is fully healed. Maybe you will be functioning much better but it does take that long and 9 weeks is very, very early. I truly empathise. When it was me I was like a headless chicken trying to find a diagnosis, then a cure. I hadn't had a day off sick in 5 years and was suddenly and without warning laid out flat. It's horrid. But please accept this one thing, it is not going to suddenly go. The fact that you are largely managing on paracetamol is, in fact a sign that things are going well.

Re gabapentin, yes, this is normal, hence starting very slowly. I urge you to carry on because it works. I am currently trying pregablin and although I've been on gabapentin for 2.5 years and it's similar, it is laying me out flat as it makes me so sleepy but I know it is temporary so will persevere.

Something to learn in the parallel world of back pain is that nothing is quick. Ever. So lie back with a box set, take the gabapentin and give it at least two weeks before deciding if it helps. Be graceful about accepting help and do things with your dc( sorry, not sure how many or how old) that are sedentary.

Is it a coincidence re work? Probably. It's quite a common injury. Hope you have taken some of out advice up thread about keeping them off your back.

It will get better than this.xx

Morning to everyone else < waves>. Alicia, don't think we have met but so lovely to meet you. Glad you are out the other side.

[magso]

I've been getting an odd fluttery vibrating feeling in my left thigh (deep outer front of thigh) and wonder if it is back related? Its in much the same place as I usually get pain, which is mostly absent at present. Just wondered if it rings any bells with any one? (I still get the bum/hip back of leg pain in the other leg). I am hoping it is a sign of recovery but its a bit odd.

[PavlovtheCat]

magso I sometimes get that fluttering, or, a sort of wobbling, in my thigh, have absolutely no idea what it is! I hope it's not anything negative, and maybe even something positive, but I can't say it feels positive, more, odd!

Next post. New thread title...

[PavlovtheCat]

before we run out of space with no new thread, here it is! a shiny new thread for us to fill up!

Come over!