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.

[ExCinnamon]

Morning all, pavlov, I hope your DD is better.

matilda, I know my body is telling me something, I am really trying to take the best possible course of action.
I was sure on Sunday that my back was ok to go back to school, or at least woukd not be worse. Now I'm not so sure anymore.

I only have 7 weeks left, have applied for another job - I'll leave teaching - but need a reference. Deadline is Thursday and then they will hopefully contact my boss. She has managed to rearrange some of my lessons so I have a day off now.

If things get worse I will stop working again, even though it will mean no summer holiday for us. I won't risk this getting chronic.

In a way I think it wasn't the sitting - I don't sit in my lessons - I am so tense when in the classroom, all my muscles seemed to have tightenend if that makes sense. It made me ache after I got back home.

I promise I won't be stupid. Have to get up now for some

[PavlovtheCat]

ex you can get stick on heat pads! have you tried them? Might be worth using while you are in the classroom, to help reduced the pain as you get tired by the end if the day, at least put a hottie on as soon as you get home.

Dd is complaining of belly ache. Pain is right down into her groin area and her belly is tight and a little bit sticky outy. She has normal temp, but says sh has not had a big ewe this'd morning. Not sure if it's her bowels or her bladder, maybe has a uti? She actually asked not to go to school so that not usual for her, but like mean parents, we sent her anyway. She as also dancing around the front room, so DH said she must be ok! Won't be surprised if he has to go get her later.

tough don't stop posting in case it seems like you are moaning! please moan hired, it's what we are for, as well as cake and internet shopping. If you can't winge to us, who can you winge to? Sorry you are in so much pain. Hope you bound some nice boden stuff at least. What's you take for the night pain.

I can't stand straight. My muscles are solid, the whole back from lumbar to Middle is rock solid. The pain is ongoing down my legs but mostly in my back for now. I am bent forward and not been bent forward for a long time this badly. I am going to take my own advice and go get some more heat pads on the way to work and use it at work. Lots of tramadol today, sure I will be a valid and useful part of the meeting still at home as got to wait for DH to do school run and take me to work as can't do bus today. DH is still in pain but much better than yesterday, he was reasonable when he got up, but after being up for an hour started to visibly stiffen in his movements. I have given him a stern lecture about taking anti inflammatories to max dose today as he is notorious for not bothering, and he ate breakfast which he doesn't normally do this early and took some of my naproxen. I am annoyed that my back has gone now, as I would like to have paid him some attention for a change, don't want him to think I am trying to minimise his situation with my constant drama, I know he doesn't really, but still would prefer not to coincide with him needing me for a change.

Have a reasonable day everyone.

[candycoatedwaterdrops]

This thread moves fast! Thank you for the supportive replies. I do have a lot of support around me, thankfully but I'm not always very good at asking for it.

This is a new area for me, so I'm afraid I'm not very clued up on the terminology. I hadn't even heard of facet joints before.

I hope today is kind to everyone.

[LoonvanBoon]

Just tracked the thread down! Nice nails, matilda.

Pavlov, can't believe all this shit happening at once. Hope you all improve over the course of the day - take it easy (& lots of drugs). DH has had a couple of episodes of what the GP says is simple back pain since the Autumn, & it is kind of scary when there's two of you not able to bend / lift / drive etc. DH hasn't had any leg pain, fortunately, but he does get a very dramatic looking sort of muscular scoliosis - he looks like a zig-zag man from behind! Pushed him into asking for diazepam last time as it was so obviously muscular & it did work wonders, along with heat.

I'm not feeling great today - both legs & upper back too, so am going to be good & get off the laptop & lie down. Hi to the newcomers!

[QueenChrysalis]

Morning!

Erm actually afternoon just.

Hardly slept last night. Too much pain. I think I need to up the patches to 15mcg/hr which is two patches. Got evicted from the bed (DH works in there rather than sensibly at the kitchen table) so snoozed in the sofa with DD1 playing around me with very loud YouTube videos. Feeling zombie like. I also think cocodamol works better if I take it regularly rather than just once before bed. I'm getting more pain down the left too. DH is an unsympathetic toad. Perhaps some excruciating back spasms would be helpful for him to have for a day or two - preferably work days as he wouldn't take time off. I'm making sure he comes to the app with the surgeon as he hasn't really come to any appointments about my back.

Anyway more lies unfolding from the GPs - they told me there was really long delays for physio. So I called a private one and she is coming today. I was rather surprised to get a call to book in an NHS physio app for next week, in fact today if I was available. Fuckers. I was crying last night thinking about how they've treated me. Like a bloody crazy person, it's so upsetting, heartbreaking in fact. Going private makes me feel a bit more like the person is on my side and not a giant bureaucratic organisation which doesn't care unless it's cancer of course. Ah crying again. Do you think it's worth emphasising the psychological impact to the surgeon? People have boob jobs because of psychological distress, why not a Discetomy? And is it advisable to stop taking medication prior to meeting the surgeon, so I present with full symptoms rather than masking the pain? Although I'm no where near my worse with full on spasm, I should be very thankful, especially recognising those times in others here right now :(

One month tomorrow, 31 days until my appointment.

[QueenChrysalis]

Back from nursery run and DH is ok with dropping me off for my sports massage.

Boots - Did you say you are doing something legal connected to it? Is it due to delay? Or specific to CES?

Yep I was glad I lost my baby weight as I knew they'd mention it otherwise (lost 3 stone but gained a bit back so BMI is top of healthy), although laziness was another reason - not doing pelvic floors and generally not being fit. Physios are always fit and sporty people, although they often specialise in sports injury showing how dangerous sport is, best avoided I think ;) But I was 29 when I had DD2 so not old I hope. I'm absolutely not having any more kids that's for sure, although I never planned to do it my 20s, DD1 was a shock!

As for weight, I noticed I was hungry, especially for sweet stuff while on gabapentin. Now I have no appetite during the day, just coffee. I think it's just feeling miserable and stressed.

[LoonvanBoon]

Queen, sorry your DH is being unsympathetic. Yes, perhaps he does deserve a quick dose of back pain, just to give him some idea of what you're coping with day to day. Though I honestly don't think a brief, acute episode can give much insight into chronic pain & the effects - psychological as well as physical.

And yes, as Tough says, it's them, not you. I stopped as much med. as I possibly could before my first appointment with the neurosurgeon - I wanted to see for myself, as well as for him to see, just what it would be like if I wasn't rattling with drugs every day. I'm glad I did it - I was coping most days with the drugs, but it stopped me from minimising the symptoms. And I was physically stiffer & less flexible, & getting more pain at an earlier point with things like the leg raise test - so it may have been helpful for the consultant.

He spent most of the time explaining the MRI, though. Said you've got a prolapse, it's impinging on this nerve root here (& poss. at left), & these are the options. Your surgeon will be assessing you for surgery, Queen, & although there's no way you should have had to struggle like this to get an MRI & a referral, you're here now: & you SHOULD get treated properly.

Can't tell you anything positive about NHS physio - my experience was shite. Should say, though, after all the negative things I've been saying about injections, that I was talking to someone I know yesterday who had apparently had a prolapse years ago & did find a steroid injection helpful. She says it gave her 9 months of almost complete pain relief! Then symptoms came back mildly, the second one did nothing, but she gradually recovered even at that stage (her kids were getting older & she thinks less lifting & bending, more resting, helped). So maybe I shouldn't dismiss nerve root injections across the board - though I wouldn't have another.

Oh, & yes, I think you are treated better privately, sadly. DH had an umbilical hernia operated on a few years ago, on the NHS but in a private hospital (under Choose & Book) & the difference in terms of actual patient care, conditions, waiting times etc. compared with, say, my son's NHS tonsillectomy & adenoidectomy, were staggering. But the surgeon in the private hospital worked for the NHS too, & at the end of the day now you're at this point it's the surgical skills of your surgeon that are the most important thing.

I do think earlier treatment & diagnosis of back pain is dire on the NHS, though. I get that most people recover by themselves & that it's not cost-effective to send everyone for MRIs, but when there's leg pain involved & it's not improving within 6 weeks or so it should be investigated further.

[Msdj]

queen you said that Gabapebtin made you more hungry especially for sweet food. Did you carry on using that or change to something else? I am on Gabapentin 300mg x 9 a day and especially in the evening I constantly eat. I know I am not hungry. But like you it's sweet things. I am trying not to buy anything or keep anything in the house that is sweet. But it's not that easy when you crave it. I just wondered if there was something I could change to. As the Gabapentin really helps my nerve pain

[Matildathecat]

Hear, hear to all of the above. queen, sorry your DH is being such an arse. Shall we come round and teach him a little back agony?? For all medical appointments, and especially big important ones here are a few tips:

Write down your questions
Write down the answers.
Ask that you will receive the follow up letter to your GP summarising the appointment plan.
Take someone with you so you can check you understood correctly any information.
Be pleasant but firm, you need help and feel desperate.
Cry.
Take low dose meds so you are in pain, but not so much you can't think about anything else.

This morning I've been dealing with legal stuff and realised I didn't have a list of all the hospital and assessment appointments I've endured. I was shocked. Since my first surgery I have had (at least) 25 hospital appointments including 7 spinal injections. Also countless GP appointments, weekly physio, 8 weeks of pain management and at least 10 counselling session. Bloody hell. No wonder I'm fed up with it all.

It's helped me to clarify my feelings about future medical care. I want as little as possible. In two years I have obediently jumped through every hoop to no avail. Enough. No more useless injections. Meds, yes. They help.

In short, I will take meds, rest, modify and try to live my life as well as I am able.

Fuckity fuck.

[ExCinnamon]

Hi all,
yes, have heat pads and one is now attached to back, we'll see how that goes. Hope it doesn't fall out
If I remember correctly this type got too hot and I had to take it off because I felt like a roast chicken.

I had my scan privately btw. GP said it wasn't anything to worry about as my mum had hip replacement at 50 that's what is is.
My hips are fine.

[Matildathecat]

Hi msdj, I was wondering how you were getting on. Glad the gabapentin is helping. Now trying to think of foods that might fill that gap. Fruit? Berries with frozen yoghurt, meringue with berries and low fat yoghurt? I don't get this, luckily. It is a good drug and I'm mainly over the stoned feelings. maizie was complaining of weight gain! though and she's on it, too.

[Msdj]

Fruit just doesn't seem to hit the spot! Will try cold turkey instead. Doctor told me to up to 300mg x 2. Three times a day. But the pain has started to come back so I have upped them to 9 x 300mg a day. Think doctor said I can go to 3500mg per day but I may be wrong. My head is mush at the minute

[QueenChrysalis]

Thanks for the responses. I do feel like I'm going mad and it's only people who understand that can make me feel more normal, like I'm not being completely unreasonable. At least having a month to wait gives time to prepare, I have no idea what the appointment will be like, for example the GP who told me I'd be seeing a surgeon soon told me I can ask the surgeon for medication as the GP was out of her depth. I don't even know whether she's seen the MRI and how to get it if she hasn't.

MSDJ - I'm not taking anything instead of the gabapentin, I am taking the amiltriptiline at night but it just makes me sleepy, doesn't reduce pain. I never took the gabapentin long enough to feel any pain relief benefit. Maybe after this cold pisses off I will try again, it was dry mouth that made me stop as I couldn't sleep. Nights are my worst time so I prioritise sleep over day pain relief.

I do feel sore but not in the usual way after my massage. Tender bum from elbows but more relaxed and less tensed up in the legs. I might hurt tomorrow apparently. Need to go drink water then pick up DD1.

DH still unsympathetic - I've let some stuff go, like keeping a close eye on our bank account. Apparently it's my fault and I should be keeping a close eye because it went down to nothing today due to transfer into a savings account. And that is thanks to him being underpaid the last two months because they charged him 40% tax on all his income. Although it was me who spotted it and told him to chase payroll to correct it - He didn't even know we have a personal tax free allowance! It's now a competition as to who has the most on their mind. Hmmm can I win because I have potentially life changing surgery to fight for?

Matilda - Have you tried any water therapy, it was suggested to me as there's a place in Teddington. And let us know about the alexander technique if it helps.

[AnonButRegular]

Hello all, hope you don't mind me joining you?

I have been told by my Gp that I have nerve compression. I have had lower back pain for months now, but over the last couple of weeks I've had numbness and tingling in my left hip, outside of my left thigh and inner left thigh. Yesterday u started getting shooting, electrical shock type pains on the outside of my lower left thigh and in my left ankle.

I can't take NSAIDs so have tramadol and solpadol 30/500.

I have a physio appointment for mid June too.

I find that sitting in my office chair makes the numbness worse. It's an awful sensation, like something moving under my skin.

Does anyone have any tips?

Thanks

[PavlovtheCat]

Have you had an MRI anon, your GP has said you have nerve compression and you clearly have signs of it, so the next step is MRI. You need to go back to GP asap and let him/her know that the nerve is showing clear signs of entrapment and you need an urgent referral for MRI/spinal team at the hospital near you that has a spinal assessment team. NO amount of physio will touch your nerve pain or untrap the nerve, and in fact may make it worse so they will unlikely touch you other than some minor stuff.

What is your GP thinking, knowing you have nerve compression and referring to physio?

What can you do now? Heat in the form of heat pads or hot water bottles may help a little but not a huge amount - do you have any diazepam? If you have muscle spasms they can trap the nerve further or cause nerve inflammation and diazepam will help. Lie down, flat, with a pillow under your knees to release some pressure, you may find completely flat makes the numbness worse. I found, when I had this, that laying on my right side, and pulling my left leg up towards my chest helped the most and I slept in that position as it gave me the most relief. But, you may have to shift around a bit to get the right position for you.

Are you able to take some time off work? You should not sit if it's making it worse, so take a look at your desk if you must work to see if you can raise your monitor, and somehow get your keyboard and mouse up higher so you can work from standing. I did this for a while until I got a standing desk. If you are not able to stand for long periods, and cannot sit, then really, you should not be at work at the moment.

Longer term, you may benefit from some nerve blocking painkillers such as amytriptiline or gapapentin/pregabalin, but those take a couple of weeks to start taking affect.

But, right now, I am concerned that you are losing sensation in your ankle. Please go to A&E immediately if you get any of the following symptoms:

*Your foot goes completely numb
*you have sensation changes in your 'saddle' area, including your genital area, backside area, these can be numbness, pins and needles, or altered sensations.
*you are not able to control your bowels or your bladder (either can't stop either, or cannot go), you may find you have constipation with tramadol and solpadol but if you suspect it might not be that, but linked to pain/numbness, or you are unsure, then presume it's not and get it checked at A&E.
Tough may have other symptoms to suggest for you to keep an eye out for - these are all red flags that may signal Cauda Equina (spinal cord being trapped) which is a medical emergency. If in any doubt whatsoever, you will not be unreasonable to go to A&E and be reassured it's not. Especially with the numb ankle and thighs.

[PavlovtheCat]

ok, just re-read and saw the ankle is not numb at the moment, but numbness anywhere in the leg should be investigated quickly as it is a sign of compression and your GP already says you have that, really you should be seen in hospital asap. And you definitely need some nerve blocking meds.

[PavlovtheCat]

tough you are the first person i have spoken to ever that has been told by a hcp that the disc leakage can cause symptoms. I remember asking a physio about it and she laughed and said the disc does not actually leak even if there is a tear. i knew she was talking shit but no-one else has said it can happen. Thank you

I feel a little better, thanks to some lovely tramadol slow release and double dosing my naproxen and a curaheat pad. I have not used this one before, normally use the thermaheat one as it goes around more of my back, and I didn't read the instructions, just opened it and slapped it on, only when It was on and warming up nicely I read the instructions which said to put it on clothing not directly to skin! cinnamon is it the same one as yours? Well, needless to say I said 'sod that!', I'm not walking around with what looks like a sanitary towel stuck to my t-shirt and trousers leg pain, in particular in my feet with some of that tight gripping numbness is largely when sat down (driving in particular) or walking. Walking hurts and I can barely lift my legs up and forward, but when I am laying or sitting leant back with feet up I feel ok, just sore. So, not great, at all, but not as bad as last night or this morning.

matilda so gutted for you having to accept this, but I get what you mean totally about no more appts. I feel like that, I don't want to keep going around trying to get people to make me better when it won't happen, just want to resign myself, give up almost. But, it's not giving up, you know how to manage your pain and you have done so so much to try and improve things. Maybe that's why hcp often just give painkillers and pack us on our way, as they know it's likely going to end there eventually You are strong, positive woman, and it's shit this has to be like this for you

[ExCinnamon]

Pavlov, my orthopaedic consultant said something about leakage as possible cause before I had the scan. And he also made me aware of the cauda equina symptoms and scared me

My heat pad attaches to clothes too. Is lovely actually, attached to my pants very fetching.

Have to stock up tomorrow and will get those on-the-skin types. I need the heat a little bit higher up.

[PavlovtheCat]

cinnamon others on this thread have sworn by Wilkos for much cheaper heat patches that are just as good as the more expensive ones. they never seem to have them in my local one when I look for them, but have not tried for a while. Go take a look before spending a fortune in Boots or a supermarket.

Wow, two who have had hcp say that leaking disc can be problematic, they obviously didn't train at the same place those muppets i spoke to did my wonderwoman knickers are too low to attach my pad to

[Matildathecat]

Ah, thanks. I've only just remembered that tomorrow I start the Alexander Technique lessons so that's another round of appointments. I will give it a go but if it's not for me I will let someone else use the precious time.

queen I love the water and do a hydro programme plus swimming two or three times a week. I use a float between my legs so I don't irritate the nerve with kicking. I'm a bit bored with the exercises but they do make sense and keep me strong. Oh, and a sneaky long jacuzzi. Plus daily Pilates with a weekly one to one session. My life is Project Matilda.

msdj, maybe it's worth trying a bit more combining of meds rather than upping the gabapentin so fast. It really does mash your brains. Can you use codeine or tramadol, too? Or do you already? Just seems you have got the doe up very fast.

Anon, pavlov gives great advice. I say this a lot, but please listen to your body's message to you. During your first episode of back injury you stand a good chance of a full recovery if you take extra special care and really address the problem. Later it becomes much harder. Full recovery is achievable. Take time off and rest. Really rest.