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Endless Back Stories. Support For Back Pain and Sciatica. Thread 8.

(575 Posts)
MatildaTheCat Mon 03-Aug-15 21:08:54

Sadly there seems to continue to be a need for this thread as many of us continue to suffer from back related pain. There are many causes, the pain and misery is shared here and hopefully some comfort derived from knowing we are not alone. We are strictly non competetive and newcomers most welcome.

We can offer advice on medication and effective drug combining plus other methods of pain management.We have used different treatment options from hydrotherapy and physio to surgery. We can share our experiences of navigating the big and baffling medical world, both private and NHS 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. sad. We are not doctors just people who have trodden the painful path of obtaining a diagnosis and dealing with our conditions.

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.

If you have advice, need advice, need a hand to hold, want to do some shopping another skill obtained along the way , then come in. We are friendly. We talk a lot. Come in, have a brew and say hello smile

Our Last Thread

Cauda Equina Syndrome. A must read for severe acute pain with Red Flags. Please Read

Constructive Rest. A Simple Exercise Anyone Can Do

PavlovtheCat Tue 04-Aug-15 16:55:58

<waves> thanks matilda for the shiny new thread!

We have a home not a junk yard! I have broken myself doing it but feels so so much better, just need dh to put things in loft. When he wakes from jet lag nap! He got home at 1:30pm having entirely missed a whole night, left San Francisco at 1:30pm yesterday and landed at 7:10am in UK!

Neck pain is getting worse. Back pain is as I would expect with doing too much, sciatica in particular. But, nicer to be jn pain and not working, last week of annual leave this week.

But, despite the nights and mornings being very cold we have done sun at least!! x

MatildaTheCat Tue 04-Aug-15 19:01:57

Must be something going on as my sciatic pain is much worse, too. Am considering switching to Pregablin to see if it makes any difference. I am also very fed up with the stupidity that comes with gabapentin. I could increase my dose but surely that will make me even more stupid and forgetful.

Had a real disaster of a day yesterday, mainly due to brain fog/ forgetfulness.

Sorry, how meme. Glad the clear out is done, Pavlov v there's nothing like a old clear out. grin particularly apt in codeine world.

Sorry to hear of the sciatic pain being a bit worse recently, both. We were away briefly a fortnight ago, and DD is going through a real water baby stage, so, as it was in the 30s, I was in the pool with her A LOT! It's made (an albeit short term) difference to my sciatica pain with all the swimming/weightlessness. I'm resolving to try to gEt to the pool more than our usual twice a week. Any use for you?

allypally999 Wed 05-Aug-15 09:32:19

My pains are worse here too ... I blame the weather.

Am also very stupid so am starting to decrease the anti-d's as I blame them (though may be wrong). We take so many things how are we supposed to work out what causes which side effect? confused

Another black day with rain here .. situation normal sad

CainInThePunting Wed 05-Aug-15 19:08:43

Oh, shiney new thread. Nice.

Pavlov I'm very impressed by your productivity but sorry you are suffering now. I too have developed a skin thing I think since starting Gabapentin, it starts as small water blisters on my knuckles and between fingers which itch and once popped evolve into a dry scaly rash. I had thought it was a kind of eczema. I've been putting hydrocortisone cream and emulsifying ointment on which seems to calm it down. I don't know if that helps you.

I'm working on convincing myself that £50 for a pillow is an investment... It seems such a lot but I can imagine it might make a huge difference.

I second the brain fog of Gabapentin, I tried to reduce my dose as I'm due back at work on Monday but the pain started to increase so I've gone back to the original dose. I've spent today feeling like a sleep walker. I would get myself sacked if I turned up for work like this.

I have a question I would like to ask as I'm actually a little worried. I had the MRI last Thursday, they advised me it would be 10 days for the results but I got a call yesterday to arrange an appointment and its on Friday. Would you say that is just the NHS being über efficient or could the quick turnaround be down to something a bit serious?
I'm probably feeling a bit morbid as I've lost two family members in the last week, it makes you consider your mortality. sad
It's impossible to speculate isn't it? I will probably be told it's just an unlucky disc protrusion hitting the nerve and physio is all that's needed. PMA rebooted.

Ally I'm in the north west of England and we had a passably summery day on Sunday, did you see any of it? Miserable grey skies now but it was nice briefly. I hope you get some summer soon.

MatildaTheCat Wed 05-Aug-15 21:57:27

Cain, sorry you have been worried by the response to your MRI. I think I would feel the same in my present 'patient' mode. In my former 'professional' mode I would say, how efficient of the nhs to have reviewed the scan and arranged an appointment to discuss the results with you.

You are probably right about the diagnosis but whatever they say at least they have looked and taken notice. Keep us posted. And sorry you've had recent losses. I'm sorry but my gabapentin brain has lost track of your back story, can you bear to give me a brief recap?x

I've had a small experiment the last couple of days and replaced a couple od cocodamol doses with tramadol in order to shake things up a bit. So far so good. Pain is noticeably better when I've taken it and even better side effect is some loss of appetite ( am a bit menopausal and have gained a very unwelcome half stone). However, I'm very mindful of the risk of tramadol addiction though unclear if it is worse than codeine dependency which I must surely have? Any opinions?

Re the weather updates, am in the balmy SE England and though not that sunny today it's still quite warm. Actually rather a pleasant summer all in. Had. Very lovely walk hobble in Richmond Park this morning with two great mates, our dogs and fresh coffee. Bliss. smile

Oh Cain - sorry to hear of your recent bereavements. It does make you feel more concerned I know. sad I do hope your MRI is just efficiency!

Matilda your day sounds nice with a walk/hobble in the park. It's been wet here. Scotland had its summer in two days in June. It's so grim weather wise right now. Boo. Makes me want another week in the sun somewhere. grin

All who are struggling with gabapentin - if it's any help, I felt like that for about the first 4 or 5 months I was taking it. Now I take 8 a day (3/2/3) and I'm a bit forgetful with some words but I'm no longer 'aff my tits' as my colleague says! grin Honestly, I feel about 90% mental capacity, which I'll take as the trade off for the reduction in nerve pain it gives me. Just if it helps with the perseverance. I'm glad I did.
Night all. Sleep as well as you can.

allypally999 Thu 06-Aug-15 10:42:37

Cain - the NHS can be efficient - must just be that eh? And no still no trace of summer here - the sun appears for a few minutes now and then and then back to dark skies and rain. So sorry for your losses! sad

As regards the pillow having spent probably £200 on several over the years I now have an idea of what might be best for me now my neck is buggered although I didn't pick any of the £100 ones so £50 seemed reasonable at the time. Not sure its helping my neck but I am sleeping well which is worth £50 lol.

Off to take a handful of Tramadol as have put on several stone (joking honest)grin

CainInThePunting Fri 07-Aug-15 15:55:18

Hi all, thanks for you messages.

The results weren't nearly as bad as my worst case scenario but I'm still a little freaked by them. I have a herniated disc which is pressing on the nerve causing the sciatica.
My options are surgery or physio so I've asked to be referred for both as she said I will need acupuncture to reduce the pressure before I can get on with physio but I also want to consider surgery depending on the risks/predicted results and likely success etc.

I don't know what to think about surgery. She said it would be keyhole to snip away the bulge of disc but she said the specialist would go through risks and likely outcome. I don't know. Will have to wait and see what they say.
Surgery feels like a big decision.

So! Good old NHS is efficient. smile

I find I lose my train of thought when I'm trying to relate a story or event. I'll be describing something and then will end up talking about something else entirely. I just say 'Sorry, blame the drugs!' which stops the funny looks grin

Well, it was a beautifully sunny day this morning but has clouded over now and I think more rain is imminent. It is expected now so I just make the most of it when it is nice.

Have a good weekend everyone!

allypally999 Mon 10-Aug-15 10:29:11

Cain - well at least you know what you are dealing with now. Keyhole surgery should be quicker recovery (not what I had) but you are right to try physio first. Some of the others might chip in with surgical recommendations but I just went with NHS. Back surgery is notoriously problematic though as I'm sure you realise so research is a good idea before you jump in.

Sun is shining here so fingers crossed might actually see the back garden for a few minutes .. not expecting much lol

MatildaTheCat Mon 10-Aug-15 12:38:50

Cain, I too, would try all options before surgery but only you and your surgeon can decide what is right. I know some disc herniation a are so severe that it's a no brainer. However most, left alone will eventually get better on their own.

Having a bit of a tough time just now. I am switching meds around and suffering breakthrough pain. Am hoping it's temporary because the leg pain is driving me mad.

Bassetfeet Mon 10-Aug-15 19:50:28

Long time lurker and occasional poster here. Find lots of info and kind wisdom here. Thank you . It comforts.
Have crushed disc lumber5-6.. Very lucky in that I only get acute pain when standing or walking . A blessing indeed.

Other symptoms have arrived in my life .Hugely weak muscles and acute fatigue. Probably not related to back issue.
Just so tired and low . Referred to Neurology now .

Long drawn out post I know blush. Guess what I would like to know is how did you lovely feisty folk get over the loss of your physical health and adapt. Am struggling with no diagnosis as yet . Usually stiff upper lip .
But floundering now . Thank you . healing thoughts to you all.

allypally999 Tue 11-Aug-15 09:43:06

Oh dear so sorry to hear this Basset. Some of us struggle with depression (which must be partly down to chronic pain) ... I am one who does. I have been on anti-d's for a couple of years but am going to come off now as I still have ups and downs and there are so many side-effects. I try and do things which make me happy (shopping, painting my nails) but often turn to food for comfort and am now a blimp (which doesn't help the back mobility issues) but I am hoping coming off the anti-ds might help. These ladies in here keep me going ... no matter how bad your day is someone else might be worse off and although it doesn't help you just responding to someone else does re-direct your feelings for a bit and then you can worry about them and not yourself. Some sunshine would cheer me up most days but living in Scotland that rarely happens. All that said I am still a glass half-full type and work hard to find the good side of things (nice home, lovely hubby, recently given up work yeehaa!) and looks like you are already doing this. We laugh at lots of silly things (struggling to get dressed, bathing, etc). I have grabbers for picking things up which are a godsend. Sometimes we cry too and that's ok. You are in the right place! grin

MerdeAlor Tue 11-Aug-15 14:19:18

Found you all, hello!

Sorry to hear about your symptoms Basset I also live with weakness, fatigue and unconnected chronic back pain. Adapting and accepting has been a slow gradual process for me.
Speaking about it openly helps, although people do not really understand fatigue and weakness, back pain - yes because lots of people have experienced it but neurological symptoms - no.
Think one day at a time, try not to assume the worst, don't push yourself, don't rush your recovery. Accept help wherever it is offered.

Diagonally Tue 11-Aug-15 14:23:02

Hello all
Still suffering here too I'm afraid (sciatica for 4 months due to l5 disc prolapse)
Injections 5 weeks ago had small reduction in pain for 3 weeks then back to the usual ( worse even) for the last week. Barely sleeping, signed off again etc.

They are going to start me on a new med regime completely, including a nerve drug which I haven't had yet.

I'd really appreciate your experiences of the various nerve drugs (I expect I'll get a "choice") plus any thoughts on coping practically with stuff? Physio keeps helpfully saying "well you need to be doing less of the things that exacerbate symptoms" but who exactly is going to do them?!

I have an 11 year old who will help out with bits & bobs but he's just starting new secondary school in Sept and I want him to settle into new routine without too much stress at home.

allypally999 Tue 11-Aug-15 14:28:24

Well said bassett - other people just don't get it.

Hi fellow ally lol. I do feel for you guys with kids as I can just stop doing stuff and hubby can fend for himself. I have little experience of nerve drugs but lots of the others take them so hopefully someone wiser will be along soon. Some of them have had the injections too .. so more advice will turn up I'm sure. Physio is right I suppose but as you say washing, shopping, etc has to be done eventually. Alexander technique has helped me a wee bit but doing things in stages helps more. Takes me a whole week to get round it all and then I have a week off (but no kids here). Hope the new drugs help once you get started!

Diagonally Tue 11-Aug-15 16:08:23

Thank you ally thanks

Cain I'm at the same stage re surgery. Pain consultant said give new meds a try and watch & wait for signs of improvement over the next 2-3 months. If things are really no better then consider surgery towards the end of the year.

Psychologically I'm struggling. Just been dumped by my bf of 7 months and DS & I were supposed to have been going away to see friends at the end of the month which would have been a real tonic. But I daren't even book flights as I'm not up to travelling in my current state. He'll be disappointed too if we don't go sad

Bassetfeet Tue 11-Aug-15 19:16:39

Thank you ally andMerde for your words and wisdom . Helped me a lot .

MatildaTheCat Tue 11-Aug-15 20:56:02

Basset, sorry you are feeling so poorly and down. I hope the neurologists can shed some light on your symptoms. One thing that occurs to me is that Pacing is a Texhnique which works well in pain management and chronic fatigue illnesses, too and definitely worth Googling. It's a pain to incorporate but does help.

Diagonally, I've had and having various nerve drugs. Currently I am switching from gabapentin to pregablin and hoping for fewer cognitive side effects.mpregablin is way more expensive so likely they will offer gabapentin first. I also take amytriptiline at night which helps both nerve pain and sleep. Al need perseverance as they make you feel quite sleepy for the first few weeks. Worth it in my opinion. If you add in an opiate taken regularly plus an anti inflammatory you should get the best possible control. It's good that the injections helped but a shame they didn't last longer. If you are offered more perhaps they can add in more drugs for longer effect.

I think we all feel up and down with the pain and loss of ability t do what we want. Sometimes I can be a Pollyanna and find things I an glad about and sometimes I want to scream. Coming here and venting helps.

Lastly, I have travelled and flown quite extensively whilst suffering and with very careful planning it is possible. Ask away if you need tips.

Diagonally Tue 11-Aug-15 21:47:40

Thank you Matilda really helpful. The consultant mentioned a slow release opioid too. Just waiting for his letter to come through so I can go in to GP.

I've also booked up for an acupuncture session next week.

What tips do you think for travelling? I have flown twice since having this episode - first time was dreadful as it had only just started & I only had otc painkillers. Second time I was better prepared and also didn't have a long drive to the airport which helped.

Hmm. Just nervous of being away from home on new meds I think. But I will be at friends who will be able to help me access healthcare if essential. As long as they don't mind me pacing round the house at night if necessary grin

MerdeAlor Wed 12-Aug-15 08:38:47

Diagonally, get away and see your friend if you can. I'm on nerve drugs, opiods, anti inflammatories etc. I travel OK with careful planning, enough drugs and good beds at the other end.

Book assistance at the airport, take a travel cushion for your back and plenty of drugs. Definitely have a suitcase on wheels and don't pack heavy hand luggage as you'll have to lift it into the over head lockers.

It will give you such a boost to get away, you won't regret it.

Bassett - sorry to hear things are a struggle at the moment. It's not easy. I'm not one of the feisty positive ones, but more grumpy and belligerent ! wink Seriously- I haven't accepted that I am losing my physical health and that's possibly part of my problem. But it's not all about me!

I've found my physio wonderful, liked my first surgeon, been fobbed off by my second surgeon, humiliated by a radiologist and been told by my GP this morning she just doesn't know what to do now. So, i would say you may meet people across the health professions who treat you quite differently throughout your journey. If you find good, supportive ones, they're worth their weight in gold.

Don't be scared to ask the questions, ask for the drugs and treatments you want to try, and push for answers. I'm sure my GP is despairing of me but I'm not willing to let this one go yet. I'm also seeking further opinions through other routes, and paying for this. It's not right we have to do this, but if it changes things, it will be more than worth it.

I've been on one of the nerve drugs, gabapentin for over a year now, and yes I was fuzzy/spacey to begin with, but generally ok now. However, my pain is now such that we're discussing a move to pregabalin. Lots of folks on here have tried a few different things - and we find the balance that works best for each of us...

Here endeth my novel - but you're not alone.

MatildaTheCat Thu 13-Aug-15 12:53:21

Re travelling, Merde has pretty much covered it. Airport assistance is a must and very helpful IME. I would add in packing a couple of days ahead so you can have a really quiet day before you go and not planning to do much for the first day or two. If you feel ok then you can do something. Definitely take your cushion, I've never had it counted as a piece of hand luggage even on Easyjet. And drugs, lots of them. Declare any controlled meds at every opportunity and take doctors letter if needs be. (Depends on destination).

In fact I have been given the go ahead to book a girls weekend quite soon so will be undertaking two separate trips in the bearish future. Fingers crossed for lowish pain days.

Agree 100% about building a good team around you, there are inevitable hits and misses with this! I'm happy with my team just now but dread my GP retiring or some such nonsense wink.

Yep.... Don't do what I did last month. I had a whack of my drugs taken off me in Athens as some opiates are illegal, doctors letter or not. Thankfully I had more hidden in my hold luggage, or else I'd have been screwed.

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