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.

[QueenChrysalis]

Matilda that is horrific. I'd be happy to pay double the £6k to get it done right, but like you say it is a business transaction. I don't know if it is different for those covered by insurance - knowing the bill will be covered by the insurer. I'm seriously considering taking up some cover once this is over, I almost did a few years back.

I think my friend is worried about the NHS appointment being a disappointment because it's so short and unlikely to end in a decision. The private appointment being longer may mean we get to a decision point as we have more time.

Seriously I am going to be crying when I walk in the room. I'm going to come off the drugs as much as possible - more rocking back and forth in the chair and going pale. I realise life isn't so bad, I'm lucky compared to many they must see, I cope on the drugs but if there is a chance to be drug and pain free why wouldn't they help - I'm going to really struggle getting up for school runs on the amiltriptiline? Although I will give the physio my best shot, I'm expecting an email outlining a few bits to work on, some muscles have stopped working properly - not sure if this is a nerve thing or a reaction to pain or indeed pregnancy. I don't believe it's pregnancy seeing so many friends with no issues like me, it must just have contributed - stretched tummy muscles and the physical stuff when caring for the kids. I don't even believe physio will help. Even with the new diagnosis the exercises are nothing new.

I'm going to improve my write up of symptoms and send it to DH to fwd. no extra drugs today but I will go for two patches to make 15mcg/hr on Friday - with the butrans it does seem like it's an inevitable work up the doses, not sure if the same for other butrans users. I do recommend them, no side effects so far and no constipation even if I don't need codeine. Plus they aren't that strong in the opiate world, there's another patch much much stronger called fentanyl or something.

Any anyone else find themselves constantly rocking, shifting around? physio said it was a natural way of reducing pain, as is cardio work. But it also makes me look like a bit crazy and my friend told me off for rocking back and forth.

[QueenChrysalis]

Oh and the opposing view of worrying the NHS side won't agree is based on the GP refusing to refer me anywhere except the pain clinic and refusing an MRI. I presume this was motivated by money so why would a surgeon spend NHS money if they can also fob me off.

And the subject of injections being replacement for surgery is annoying. It can help if the body is going to heal itself and just needs time and pain relief. There was a DM article presenting the injections in such a way when googling for info.

Actually I might email a friend who's husband had the surgery and see if it compares.

[GoalieMum]

Hi, can I join in? Have had sciatica for a few years now, had nerve root injections, physio and yet it remains. On my last trip to the doctors, was referred to the pain management clinic and am having an epidural injection tomorrow. How is this different to the nerve root one? I am having it done at a private hospital as an NHS patient, when I went there for the consultation they didn't even examine me, just made me fill loads of forms in.
I have recently also had a new symptom, of almost complete numbness in my upper back, where my bra strap would be. This area can be very painful, even kept me awake last week in agony. I mentioned this to the consultant, but was told it was just referred pain. I really don't think it is, and would like an MRI to see what's going on.
Suppose I will have the epidural and go from there. Anyone else had this, what can I expect tomorrow?
Thanks

[Matildathecat]

Hello goalie, sorry too tired to post but welcome and good luck tomorrow. Will post in the morning. Unusually quiet here tonight. Sleep well.

[ExCinnamon]

Hi all, I am too wrapped up in work to post much, but following the thread. My back is slightly worse, even after a day off with plenty of rest. Will see how the next two (very busy) days go.
Hope everyone has a good day!

[QueenChrysalis]

GoalieMum - Hope it goes well. I don't have any injection experience but others do so hope they answer, even googling doesn't explain things very well and GPs don't know much either. Have you ever had an MRI about the original symptoms? I'm not sure on the numbness either. It sounds worrying and usually everything refers down, except muscle spasms due to compensating or protecting against pain.

Cinnamon - I find it varies hugely how I react to rest or activity, it doesn't make much sense but overall taking it easy as much as possible is best.

I've been wondering about muscle weakness and whether that is can be directly connected to the nerve compression - I have lots of weakness and muscle wastage on the right of my pelvis, previously blamed on pregnancy. I know it can be indirectly caused by the disc because of protecting myself against the pain. But there is also a bit of weakness in the pelvic floor at the back. I'm trying to figure out what the symptoms are and what they may be caused by. I don't believe it's down to being unfit as the pain never reduced even with regular gym going and physio. I'm also wearing my SI belt as advised.

One win for today is calling the pain clinic and they are arranging to send over the MRI image to the surgeon. Whoop. I really want to see it, see how it looks compared to all those on google images.

I really hope people aren't suffering so much today, enjoying a bit of sun and yay for the kids eating lunch outside.

[LoonvanBoon]

Enjoying the sun, Queen? Outrageous! There's no bloody sun up here today.

GoalieMum - good look with the injection. I've had a nerve root injection that didn't help, but not an epidural one. Have they explained the rationale behind it? As far as I understand, the epidural injects steroid & local anaesthetic into the epidural space - the area in the spine outside the dural membrane - & a number of different nerves travel through this space into the back & legs. So it's intended to give pain relief even when it's not clear about the exact source of the pain / which nerves are being impacted.

However, as you've had a nerve root injection already, I'm guessing you do know which nerve root(s) are being impinged upon? Or was the aim of the nerve root one diagnostic - just to see if it helped, & so confirming the involvement of a particular nerve root? Have you had an MRI?

Doctors seem to say different things about injections - some presenting them almost as curative (not too much evidence for that, sadly) while others say they can help provide pain relief during the period where - hopefully - a disc prolapse might heal itself. Fingers crossed you get some relief from yours. They can temporarily make things worse, so be prepared for that.

Not sure about the upper back symptoms. It's much, much less usual to have disc problems / wear & tear in the mid to upper back than in the cervical or lumbar areas, but muscular problems / referred pain seem pretty common. Do you have any problems with your arms - tingling, numbness etc.?

Hope everyone else is okay. Has your flare calmed down a bit, pavlov? And is your DH on the road to recovery?

Matilda, let us know how the Alexander technique appointment went when you've got chance.

[GoalieMum]

Hi, am back after the injection. The consultant was doing 17 lumbar epidurals today, I was first on the list so home nice and quickly.
I have had an MRI about three years ago, so they do know what nerves are being impacted on. Asked the consultant today about the differences between the two injections and she just answered about the fact that the epidural didn't hurt as much! Although didn't quite feel that way when she was pushing the needle in!
I still don't think the upper back pain is referred pain, think it needs looking at. Will give it a few weeks and go back to the doctors again! Get fed up of having to fight for everything, it should be easier than this.

[LoonvanBoon]

Hope it helps, GoalieMum - try & take it easy for the rest of the day now! Just realized I wished you "look" instead of luck in post above - hanging my head on shame (or can I blame the codeine?).

[Matildathecat]

Hi all, goalie good luck with the injections. I think I said yesterday I counted mine up the other day and was slightly horrified that I've had seven in the last two years. Each and every doctor had different views on the best place to inject and often changed their mind on the day and did something different so it's, let's say, an imprecise science. None have really benefitted me and some made me worse.

Last week I also developed bad upper back pain. It came on very suddenly like a vice. Really sore but I knew it was muscular spasm. It has taken me ages to recognise that spasms are hideously painful. Heat and a good massage have sorted it out. I really recommend a good sports rehab type massage.

The spine is all connected and it's very common for a low back injury to cause symptoms all over the back. Annoyingly.

So, Alexander Technique.... Firstly I was a bit late and then got a gentle frown when it turned out that my appointment letter had an info sheet asking me to buy and read a book on the subject. So not a great start. The lady who does it has a beautiful straight back. If I understand things correctly (and haven't read the book obviously!) the main thing is standing straight, relaxing shoulders and balancing weight evenly. I like to stretch out on a seat if I have to sit or do the Wonky Hand under Bottom Sit. That's a nono too. Then I dad the daily exercise which is lying on the floor, very relaxed head balanced on a 4cm book. Knees are bent and feet flat on the floor. Hands relaxed on tummy. Then you lie there for 10-15 minutes. It puts the spine in the correct position and allows discs to generally rehydrate. Ideally done twice a day so vital to build into ones daily routine. It feels nice. So I will try. The hard bit for me is keeping equal al the time as I naturally move off my left side because it hurts. If can see, though that doing that puts other muscles out. Next appt next week. I'm impressed to get this one to one on the nhs. So I will read my book and practise.

queen, yay to feeding dc outside. Life so much lovelier in the sun. Hope your pain is ok. Getting the MRI image sorted is good. I'm feeling optimistic about all this. Surely he can't send you away without a plan. I'm sure he won't. Every appointment should result in something happening.

Enjoy your day, everyone.

[Msdj]

Oh hell ... My name is Msdj and I am addicted to online shopping :(

[QueenChrysalis]

Ooo MSDJ I got a delivery today too. Summer clothes but it's not that warm. Plus the skirt is very funky and young making me look even younger!

Goalie, I hate how the Drs don't explain things as if we are all too stupid to understand. It's our right to understand exactly what is happening and why. Three years since the MRI is a long time so I would think another would be ok, but I know what it's like trying to get one :(

Matilda I struggling with lying on my back and it's the left that hurts around the SI joint. Pushing my back into the floor helps, as the physio advised, it's the neutral position that hurts.

I think I'm in trouble - there's a family next door and the wife never talks to us, makes sure she doesn't make eye contact and right at the start when they moved in (they rent and we own) they cut out loads of ivy from the wire fence so zero privacy. No asking permission or apologies and she clearly didn't want to talk to us, shouting at her daughter when she was talking through the fence. We covered the holes with reed screens. So it was embarrassing and awkward for both our daughters to go to the same school nursery and be best friends! The no eye contact thing carried on and it's not because she is shy, she has no such problem with others. She isn't English but again I don't think it's a language thing. She was the same with my DH. Anyway I made a big effort to wait and allow her through a gate at the school and pulled her up on not saying thank you. She didn't even look at me or acknowledge me until I said it. She said she did say thank you but if she did it must have been extremely quietly and without looking at me - that's a pretty normal expectation isn't it? It's not the first time I've said something to parents at the school when they just ignore me being polite, grr. Perhaps cultural as it's overwhelmingly non English born families and I've heard please and thank you isn't as popular in some countries maybe Germany. Anyway I think she came banging on the door as I was home earlier.

It's obvious she has a problem with us. It might be I seem very young but it might be more that I'm intimidating, well my therapist suggested this because he made a presumption I was posh and successful when I'm neither.

Well hopefully that's a bit of a diversion from the usual aches and pains.





Ooo after all that the neighbour came back and I decided to answer and be uber nice. Turns out she thought I had a problem with her and that's why she then acted like she had a problem with me, ignoring me etc. so in a way she did have a problem with me but it was all imaginary and I didn't do anything wrong, I'm always paranoid about that. I have terrible social anxiety and the back pain means I often walk around with a face of doom. Especially when people don't use manners! Our daughters are total best buddies which she confirmed too so it was a shame and they probably aren't going to school together. Oh gosh you will all think I'm a bit mad now.

[LoonvanBoon]

Thanks for the info. about your session, Matilda. That lying position is one of my main pain-relief / resting positions (the other one is where I have my lower legs up on a chair seat), though I've never bothered to raise my head. Feels comfortable as it is as long as it's a carpeted floor.

I find standing straight much harder. My feet naturally turn outwards (think I read that's a sign of tight hip muscles?) & if I make myself stand with my feet straight ahead & weight evenly balanced it becomes incredibly clear just how twisted my pelvis is - & it's painful. Is the idea that you should force your body to adopt these positions even if they're uncomfortable, & then your body will somehow adapt & they'll help it to heal?

I have an unfriendly neighbour, too, Queen - nothing wrong with her English, it's her manners! I take in loads of parcels & post for her as she's out all day, but she never comes to pick them up (they do leave cards) so I end up having to take them round & she barely thanks me. And she doesn't speak when I see her on the school run (even when her sodding child nearly runs us over on his scooter). She ignores DH too & loads of other people. Most of the neighbours are absolutely lovely, though, & I'd rather have a standoffish, unfriendly neighbour than one playing loud music all night or something!

[Matildathecat]

Hopefully you can just be the kind of neighbours that nod and smile anyway. Difficult with the girls being friends but maybe that can soothe things. Israelis really don't do a lot of please and thankyous. I had to tell my SIL to teach her kids to mind their ps and qs or they wouldn't be welcome for play dates etc. to be fair I think she's made an effort and is very friendly, just says things a bit apruptly sometimes. Cultural differences can be tricky..

msdj do tell what you've bought? I got a new cashmere cardi from Boden this week. Reduced but added to a ahem substantial collection. If I ever get moths it will be a disaster .

Pain levels okish but have dosed. Have aunt staying still and have to cook each evening so eT more so weigh more and can't sit in a sulky heap playing with ipad all evening whilst slurping wine. I honestly think my rellies think it's nice for me to have guests so I have company. ER, no thanks, quite happy on my own with my own family as and when.

So six for supper. Have done whole side of salmon dollied up with pesto, olives, capers and lemon zest, potato salad and green salad. That will have to do.

[Matildathecat]

loon, not sure about forcing. Her hands very super gentle, literally the lightest of touch on my neck and shoulders and they instantly relaxed. Very cool hands, too. Maybe she's magic?

One thing several people have recommended that I must do is getting proper foot supports for my shoes. If you have the feet right then the rest might follow.

The book I ordered is The Alex Tech Workbook by Richard Brennan. Might be worth having a look.

[LoonvanBoon]

I want a magic person too! And I want that salmon!

[QueenChrysalis]

Ooo yes Matilda can I come for tea. Is there no one to delegate any meal prep to? I'm totally going to train my two to cook, as well as meaning I get a break it will be good for them anyway. I had no confidence cooking and had to teach myself. There's a shop in Richmond that do special shoes and inserts, I think I need to think about that too.

To be honest I am a bit anti social anyway and prefer keeping neighbours at a distance - they are bound to annoy you at some point so better to keep it as an almost professional relationship. I love my privacy and space and silence! Although I couldn't live in the middle of a field with no other house in sight. The neighbour's English was pretty good but I have a friend from the same place and her English is good too, a few difficulties when speaking as well but her written English is amazing, you'd never know she wasn't born here and speaks with an obvious accent. No idea about the manners thing but the school is incredibly diverse, I could never guess where all the people are from and how the school manages. The new school won't be so quite so diverse and it's very middle class professional so no wonder they do better, they aren't so challenged and have loads of parental support. But it is quite far to walk and I'm not looking forward to that!

[Msdj]

In three days I have bought -

6 dresses! I rarely go out so no idea when I will get to wear them! I actually bought two exactly the same!! I blamed the Gabapentin and sent one back

A brand new iPhone 5s

Three cases for said iPhone (why?)

My dads Father's Day present

A gorgeous men's leather Aagaard bracelet for my dh birthday

A fiorelli necklace for myself as it's my birthday in 2 weeks and I needed another treat!!

12 heat wraps. The ones you discard after 16 hours

A cover for my daughters iPad

And I think that's it. I really need to find another hobby

[Matildathecat]

Wow! That's pretty hardcore. Have you hidden your purchases?

[QueenChrysalis]

That indeed is a big spend!

I found a link to a journal on natural re absorption of herniated discs and outcomes of surgery. I did find another about absorption but can't find it, although it was pretty technical.

www.ncbi.nlm.nih.gov/pmc/articles/PMC2989281/

www.ncbi.nlm.nih.gov/pmc/articles/PMC2529204/#!po=91.6667

[ExCinnamon]

Hi all,
Queen, thanks for the links, very interesting read.
I'm shattered today, absolutely wiped out. Heat pack didn't really warm up, bugger.
Can you please recommend some that work and don't have to be stuck to your pants?

[Msdj]

excinnamon I use Thermacare back wraps. They wrap around your back and body. So they are not sticky. They are not cheap but do last for 16 hours a day. When they go cold you throw them away

[QueenChrysalis]

I used the thermacare ones for a holiday, for the travel and flight bit. They are good and the ones that stick to clothes and go hard are rubbish so it was good to find a better product. I had a look and ebay seems cheapest at around £5 a pack inc delivery so £2.50 each. I might stock up myself although the pain is lower down my pelvis than when I used them while having spasm. Wheat bags are good but don't last and need a microwave.

I'm having a bad week with the pain, not terrible but the usual but less under control. I'm going to go up to 15 with the patches tonight and have left a message with the GP to explain and enquire about going up to 20 in two weeks.

Another issue I would like to discuss with her, and get views here - I'm massively stuggling with decisions, classic sign of bad depression for me, I even got discharged from the NHS counselling today because I can't decide what to do. But it's the back stuff causing the low mood so it feels more ok and understandable. Anyway, I have been told to refer my self to a neurosurgeon - the one via SIL - as he can see me in about two weeks. It's about an hour and a half away and private but NHS funded. I dint expect that, DH sent the report to get an independent view on the likely outcome. Initially I thought that we only have four weeks to wait and it's a local hospital so easier for travel and childcare. Plus the local surgeon is not connected to family so it's ok if she fobbed me off, I'll feel less bad about it. But now I'm wondering if I should go ahead and get the referral changed. The surgery would also be much much quicker and nicer surroundings and all but still NHS. Although the drive won't be much fun. I wished we had contacted this surgeon a month ago, it would've been so much more obviously the right decision.

Anyway, anyone else getting a referral to a surgeon please don't just let the GP refer to the default NHS hospital. Go back and ask for access to choose and book - a friend told me about it after the referral but I was convinced I'd be seen very quickly so didn't question it. Not only will the appointment be sooner but the surgery if you go to a private approved hospital.

Anyway I'm back to crying and need to get myself and DD1 ready for nursery run and then out to visit a friend. I'd rather go hide under the duvet and I still have this bloody cold. But it's sunny and hopefully sunny for everyone else too.

[Matildathecat]

queen sorry you are feeling so rotten. A bad cold is horrid so that combined with back pain and depression, well, gold medal to you for being upright. If you can't make a decision maybe just sleep on it? The different surgeon sounds hopeful. I would recommend ignoring the issue of travel and childcare and focus on getting the best person. It's far more important. My hospital for second surgery was over an hours drove so for going home we put the seat right down, I had a pillow and filled up on oromorph. Can't really remember it!

I know how scared you are about being fobbed off but I honestly think you are very likely to be offered surgery based on what you have told us. Surgeons do surgery, they will should use their experience to offer the best course of action. Since surgery isn't exactly a miracle cure he might offer other options such as injections but frankly I think you have reached the end of your rope.

I hope you get through the day and feel a little better. Here's a little hug ((()))). Don't tell MNHQ, I might get expelled

[QueenChrysalis]

Update but I hope it helps anyone going through similar at any point. Called back, the GP is insistent yet again that I'm not allowed to take any codeine and I take paracetamol for breakthrough pain, but I'm allowed to go up to 15mcg patches. The problem is I do stuff which I shouldn't and I have to so I'm going to hurt, walking hurts, especially with bad shoes! Another, more experienced GP was happy to prescribe both cocodamol and butrans no issue and I've seen others online and I think a member on here. I'm relying on opiates alone for relief as the amiltripiline just knocks me out and makes me tired all the time. As does the diazepam which I'm avoiding taking.

Then the referral. The GP is insisting that the practice doesn't use choose and book and their system is to refer to the nearest hospital. She's also downplaying the issue and making reference to the appointment being such a long wait because they triaged me based on my report as not urgent. She has no proof of this, six weeks may be urgent as 18 weeks is the max waiting times and this limit is being broken more and more as funding is reduced. Anyway I challenged this in part thanks to info you ladies have given and the confidence to challenge. How can the NHS website prompt choose and book when Gps refuse access? Anyway, she is going to speak to a partner and get back to me next week. My friend was impressed by my, erm, assertiveness and she has the same GP. She's advised finding another to champion my cause and stick to that one, although I tried that back in Jan, I asked her to be that for me and she lied to me and let me down so badly. This is the quality of my life in discussion and being so easily dismissed by those with the ability to help me. Gutted. My friend advised asking the pain clinic to see me as they will know their stuff. Oh and that pissed me off when she tells me it can't be that bad when the Pain Dr is an anaesthetist who specialises in spinal work, he must know what is and isn't bad and worthy of surgery, plus he saw the image and no one else has. I don't know if they will let me go while still awaiting referral but I don't have support managing pain then I guess I will have to try.

At least waiting until next week gives time to think. You are right about not worrying about logistics, London traffic can be hellish anyway and we need childcare irrespective of where we go or I go alone. If we get any indication that surgery is probable I will change surgeon - if the appointment takes so long then how long will it take for the surgery date to come. Being over two years I am already stupidly delayed to give a better post operative outcome.