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]

Pavlov I remember him saying that a leak is more difficult than a prolapse, which can repair itself over time. He also talked about tears and other problems, was an education.

I like shorts pants, very handy just now. Feels like I have a radiator attached to my derriere.

[AnonButRegular]

Pavlov - thank you! Brilliant advice.

I do have a feeling in my nethers of numbness - like I've been sitting on a bike saddle too long. It's only when I'm sitting at my desk at work though. I did tell the Dr that but she said as long as I'm going to the toilet ok (which I am, no problems there) then not to worry.

She is new to the surgery and seems very young, so based on what you've said re MRI and physio possibly making it worse I'm going to call the Gp in the morning and ask to see someone else.

There's no chance of me standing at work - lots of computer use and phone calls - and I'm on 2 months notice of cancellation of my contract so no chance of them getting me another desk/chair.

I've taken some solpadol and will try a hot water bottle now.

Thanks again.

[PavlovtheCat]

anon look at the NHS website here for things to look out for. As tough said, symptoms are not always drastically obvious, there is not always huge amounts of back pain in some cases, and it is not unusual for someone with CES to walk into hospital. It sounds alarming and likely everything is fine, but really do consider whether you might need to just get checked over in A&E if you have saddle parasthesia (sensation changes) as, although NHS site suggests numbness, my understanding is it can be any sensation changes. It if it not constant, that does not mean there is not something happening close to the spinal cord, so really think about speaking to OOH or a visit to A&E.

I was told tough that the bits of disc that float about eventually re-absorb. Not sure where I read that, but I have always felt that there are links with the way my pain starts and leakage/toxic stuff being emitted. Even DH recognises the symptoms and thinks it's connected and he usually poopoos my theories. You were really treated badly weren't you? Three ops and having to go privately as hcp were not good at their job is not inspiring of confidence, but neither does it surprise me. Most hcp seem to think people are just talking shite/it's not that serious and don't consider that there is more going on than muscle strain.

[PavlovtheCat]

anon given you saying that you have a contract being ended soon, does that mean you don't get sick pay? If you do get it, I would think about taking a few days off and just resting as much as you can. Same for you cinnamon, if you can possibly take the hit, rest is key, as others have said.

I have decided, I heart Ikea. I have our delivery arrived today, Dh is putting up the table now, and I ordered some plastic storage boxes. They are lovely! They obviously don't sound it, being plastic, but they are white sold moulded boxes for the kitchen, very modern and I love them. I am going to buy more for the bathroom, they were like £3 each! Clean looking. And bought some cutlery containers for hanging off wall rails, and we are going to have some basil and stuff growing in them and hang them off some shelves I have bought. It's going to look fab and hopefully detract from the rest of the falling apart kitchen

[PavlovtheCat]

I posted too soon.... I was going to say, I had settled into a relatively pain free position on sofa, DH said 'table is up!' and I leapt up with excitement, forgetting that I could not actually stand up straight. OUCH!!! might have put me back a little bit, but I did find it quite amusing after I got over the initial shock, so my emotional self is managing ok! Normally, I go crashing down when I have a lapse, so good to still be smiling. For now...

[PavlovtheCat]

and apologies for taking over tadaas multi posting slots. I have taken a little more tramadol than I usually do, so got a lot to say

[Msdj]

matilda shouldn't I have upped the Gabapentin? Doctor told me to slowly go up to 2, three times a day but this week I have found that they are not working so well
So I upped them to three, three times a day. I am on slow release tramadol and naproxen too. It has helped my nerve pain a lot but my back pain is no better. Nothing I have taken has helped that

[denialandpanic]

hello had a very busy half term week and have read thread but never managed to make time to post. Sorry to hear about all the flare ups welcome to the newbies although I wish you never had to find us .

So I've been to the pain clinic! weirdest appointment of my quite extensive career. It was the Friday of the back holiday and I was on my way to our camping trip and totally not in the mood. I approached it like a work meeting. Totally "Here's the issue, so what can you offer me?" I came out with an appointment to inject both (pavlov!) si joints and some facet joints, a prescription for amitriptyline and an appointment at the tens clinic (skeptical but as well try). We agreed I wasn't ready for the psychologist (yet) and I wasn't in the market for stronger pain relief (at the moment). It was literally like personal pain shopping.

Today I saw the spine guy.The acute issue is much better with extensive physio but I wanted to go and get his opinion on whether he thought disc issues likely (for the newbies I have a form of inflammatory arthritis which I blame my back pain on but recently had a can't get up from floor episode). He reckons my muscles have gone way overboard protecting the inflamed area /I slightly pulled something and are acting sprained. Didn't seem that interested. Would have recommended physio and possibly injections which are happening anyway. You are welcome to pay 270 quid to see me anytime msdenialandpanic goodbye.

interesting though he sees injections as a temporary fix to enable mobilisation and strengthening not the cure some parts of the nhs seen to be implying. So as far as I see it we should all be given the injections then intensive rehab (except that costs to much so off you go now we've done a magic thing you will be fine).

End of the month for rheumatologist and the big decisions on the anti tnf options. I'm a bit concerned that injections are scheduled for six days before this so going on experiences of thread I may be in agony. maybe that's good????

[denialandpanic]

I meant expensive rather than extensive physio. Dp nearly had a fit today when he realised it's 48 quid a session. Then looked scared and ran off when I started ranting

[PavlovtheCat]

to denial at the SI injections. They haven't even been offered to me. I am not expecting any more help from any of the hcp and tbh I might not even bother going to the pain clinic consultant appt, I have given up expecting anything other than patronising talk about CBT. Sounds like you have had a bit of positive and a bit of fobbing off. I shall take a leaf out of your book if I do bother going and just announce my shopping list! What is the tens clinic? Is that to look at tens machine? I had that mentioned to me before christmas in the convo the pain clinic guy appeared to have forgotten since, and he said if I responded well to tens, they would consider that intra wotsit stimulator thingy, if surgery was not going to happen. Funny he forgot all about that. Let us know how that goes.

How are your pain levels at the moment, did you suffer much after your camping trip? What camping chair do you have btw? I am seeking one and sat in a couple at the weekend in the camping shop (possibly not helped my back as I got stuck sitting on a camping bed) and love the recliners but they are Verr expensive (the ones I liked anyway) and we are spending too much already to make our upcoming camp trip comfy for me. Got the bed aspect sorted, need a chair (I bought a huge oversized lounging cushion, DH said not a good idea, so that's in the front room, oops, appeared to have accidentally taken the tag off and so it can't go back ). What other essentials for camping do you have? We have bought a proper picnic table with attached chairs so I can sit to eat, and not balance on a camping chair or the floor, anything else? (apart from pretty fairy lights, throws, lovely lanterns, swathes and some twinkly mobile hangings )

[DowntonTrout]

Hi Pavlov

I'm finally starting physio next week.

The Pregabalin is working ok.

I am wondering about the injections and if they could work for me. I met someone a couple of weeks ago who had the most fantastic results with them. I was never offered them. They said straight to surgery, but as you know I have avoided that, for the time being anyway.

I might ask GP about it.

[QueenChrysalis]

Haha denial, my physio was £65 today but normal is £45 and whoop for an actually home visit - helped plan better lifting of the kids in situ, how to use my mini stepper when I can't do the gym and a few things to keep me mobile and restart building the muscles round the right side of the pelvis. Building muscles may help reduce the pushing on the nerves but if not and I need surgery I will need to rehabilitate these wasted away muscles anyway. I asked about re absorption of the disk, I get the impression these are still theories as I read a paper on it last night and the actual mechanism isn't properly understood - there isn't blood flow in the area so less chance of the white blood cells or whatever, noticing the herniation and absorbing it (I may be wrong as it was pretty technical). The physio suggested that the inner stuff going into the spinal area was noticed by the body and an inflammatory and immune response (a huge one she said) would be recognised and more likely be re absorbed. If the bulge is just a bulge it won't cause this reaction as it's not seen as a foreign body. The paper also mentioned delaying surgery a few months to allow any sequestered material to be absorbed in this process. I'll try to find it and link it.

More crying here and wondering whether to go get that private appointment or even ask mum to pay for the whole thing if necessary. She is on holiday right now but her compensation was for an accident which cause mental health issues and I suffered horribly having an absent op and very ill mother from age 5 onwards. I'm sure she would help if, it could transform my life. She is on holiday at the moment but will call when she is back I'm sure. A friend has a chronic pain issue I was helping tonight. If she went private she wouldn't still be in pain and having injections. It sucks. But she's kindly offered to baby sit on the day of the appointment. I'm not going to bother trying for a cancellation as it sounds stressful. Four weeks on Friday. Although she suggested I would likely come out of the appointment as frustrated and unaware of the plan as I am now, unless I pay as I'll get a much longer appointment. In the meantime DH is sending the report on to his sister's friend.

Fingers crossed for good sleep and low pain. I wish tramadol had the same effect on me, it nothing even at 200mg twice daily. Boo.

[denialandpanic]

Pavlov,I use a two chair combo.a normal camping chair and a kampa close to the ground thing. We had no table still building up our gear. for me the most important thing was a tent I could stand in and something decent to sleep on (5cm sim). what did you go for for sleeping?

I was sorry that we didn't get an air beam tent. they were double the price but dp gets very frustrated that I am literally less user than our seven year old putting up the tent.We managed but I had to be quite v"no I can't bend and push that in actually" firm. I hate it hate it hate it.

pain levels ok if I take the drugs, don't sit and don't do housework so perfectly incompatible with normal life

I have to decide about scary new drugs soon, still wavering

I have returned to my self harm run jogging after a month off. Bound to injure myself again soon.Swimming is actually very painful which is a total Bugger.Still doing it anyway. I seem to be getting more stubborn.

[PavlovtheCat]

downton Where you been how are you managing at the moment? Glad you have physio next week, but, don't expect miracles, I have yet to come across anyone who has had amazing NHS physio for their back issues, but we keep waiting! I think matilda has a good physio, but she is rare (it is a she isn't is matilda?). Glad the pregabalin is working ok.

I may have to succumb to the nortryptiline again myself, still have some from last prescription, but, will wait til my GP appt this week, see if I can get the low dose syrup.

Can't sleep. My sleep is ruined again for some reason, not that it every fully went back to normal but now it's shot again. Increased opiate meds I think, they always mess my sleep up, make me wired. Waking at 4am most mornings, ready to get up. Not today though as I didn't get to sleep until 2:30am. I did doze for a bit with DD in bed with me but woke when DH came home and took her to her own bed. Normally when she feels under the weather she will stay in bed with me and DH will sleep on the sofa, but felt that was not going to be great for his back. But, I took 4mg of diazepam this evening, over two hours ago and still not sleepy. I will turn out the light and get off the computer see if listening to the rain on the skylights will help me drift off.

DD is much better. She had a huge fart this morning which she said eased things a tiny bit. And this evening had another one, and her belly has softened, so think she has a little big of gas/bowel trouble, I gave her another movicol as no poo today despite taking one yesterday, so think it's constipation. She loves prunes, so will give her some tomorrow with her porridge, not too many though She sometimes forgets to drink water at school despite taking a water bottle and having access to a water fountain. I have to remind her at home, so possibly she has been dehydrated and that's also bunged her up, so need to get her drinking more as well.

[denialandpanic]

Queen I didn't feel anymore listened to at my private appointment today. I think it all comes down to the individual medic. I need a star rating like Amazon with reviews.Seriously.

[denialandpanic]

tens clinic is to be shown how to use and leant one for two weeks.I feel I should show willing??? I'm such a good little patient.

[denialandpanic]

hello downton

[PavlovtheCat]

We have got an aerobed dual something or other. We had the one down from this before, until it got a puncture which we can't find due to the children bouncing on it. It lasted two years, so hopefully it will last longer this time. It was lovely last time, very solid and this has a double chamber so DH and I can move separately without annoying the other. I did look at the self inflating mattresses but I struggle that low down, worried I won't get back up again.

What do you do for duvets? DH and I have argued so so much about this. I love having a proper duvet and pillows, soft and cottony to wake up to, not plastic and sweaty. He always complains about space, and this year I have accepted we will have our sleeping bags, but it has made me very sad. We have a Soulpad bell tent, and part of what I love is the ambience created, with duvet and nice cover, throws under the bed, and sleeping bags are not pretty but we will give it a try as we have done it my way for a while.

Our Soulpad is NOT great for single person putting up. It is a two man job, so this will be interesting to see how we manage this year with DH doing most of the work. The air beam tent - is that the self inflating one, with the self inflating arches/poles? If so, we looked at them the other day and they looked amazing! I mean, not like our soulpad which we got as we love the whole way it looks, but if we take out the nice looking part of it, they are fab, the one we looked at was huge inside, lovely seating area, looked easy to put up and was £900 We said if I struggle this year with the soul pad we might get a small version of those air ones, for ease. Our soul pad is not big to move around in with huge amounts of living space, and will update to the next size, but it's cosy, really warm in the cold, and really cool in the heat. It lifts at the sides to float and let air in, and I love listening to the rain on the heavy cotton.

[PavlovtheCat]

(oh and our picnic bench thingy cost us £20 from halfords! it won't last forever, but will be good for the children doing drawing and us eating our food on, and there is nothing that can't be fixed by being covered with a throw and with some tea lights and lanterns on )

I am now on the hunt for a windbreak that is not made of plastic or tent material. If you know where I can buy a fabric one please let me know

[denialandpanic]

kids had sleeping bags we had our duvets. Is soulpad a bell tent? I love how they look but could not be stuck in one with my kids,I need space away from their stuff!! we didn't buy the air beam but I have a feeling will be our next tent (we got an out well amarillo). maybe looking at tents will help you sleep!?? bell tents are meant to be easy to put up yes????

[DowntonTrout]

Thanks for the denial, it's always appreciated!

Pavlov it's been a manic month. The PIL turned up for a visit, they stayed 3 weeks. MIL is the Christmas Gammon Thief (if you saw that thread) it was fine but lots of work and stressful.

DH and I have been away for a few days on our own, closely followed by a trip to bonnie Scotland. I've hardly had time to blink. I'm off again today on a girlie few days- life isn't always like this- it's just everything has come at once.

I know the physio is unlikely to help much, been there, done that, as you know. But if I've been and then the physio tells me there's not much they can do then that's another hoop I've jumped through.

I haven't been taking any painkillers recently. Just the Pregabalin, and I've cut that down from 3 to 2 a day, so things are quite good at the moment. I say good, obviously that's relative. I still have leg pain but it's bearable. The back isn't spasming just reduced movement and the occasional sharp pain. I realise this is going to be ongoing and I'm going to have to bite the bullet at some point, but not yet. I can cope like this.

[PavlovtheCat]

3 weeks?!! Did she steal anything this time?! wow you have been hectic, he fully your girly time will relax you a bit after rushing! glad your pain is a little lower at the moment , fingers crossed it stays that way.

denial yes a bell tent, is beautiful but needs to be a bit bigger now kids are bigger, we had it years when we just had dd. we will get the huge one and get a woodburner for it eventually, that's the plan anyway, and the children can have the smaller one. I will do one camping trip with the sleeping bags to say I have done it, then our duvet will return kids are fine in sleeping bags. I have just bought some microfiber towels which pack up to coke can size, which should save a lot of space.

Back pain has eased thanks to some diazepam last night, still there but not so Intense, and the right leg pain is horrible still, but not tested sitting tos ee I foot numbness is still there. Think things have eased anyway.

Dd is still not well, slight temp, less complaining about belly ache but has not had a wee this morning and when she last weed it was not and hurt a bit. So suspect a uti and off to docs. DH doesnt do doctors, so I will take her and see him myself at the same time for more diazepam for me. Wonder if I should talk to him about the other stuff seeing as I have an appt now, or just let him see the other patients and return on Friday for non urgent appt. will probably do that.

Have a good day everyone x

[Matildathecat]

Morning all. My what a lot of late chatting while I was snoozing .

In no particular order, yes, one of the first things I was ever told by the loveliest consultant ever, the contents of the disc can drip and are highly irritant. Hence weird abdo pains and feeling like death in my case. £48 is actually quite cheap for physio. Can be much more, sadly. I have a wonderful reclining outdoor chair. It was expensive though got in in the sale. It's two years old now and like new. I will look up the name later. I've seen cheaper versions in the weekend supplements. I took it to France on family holiday last year and everyone was very jealous and kept pinching it. highly recommended.

msdj, I think having a chat with the GP or pharmacy would be helpful. I'm not sure how long you've been on the gabapentin. It took me ages to work up to 600x3 due to feeling so sleepy. It takes time to build up to a therapeutic blood level.

I'm in the trying everything like a good girl camp. I might rebel and say ' no thanks' soon. Def not having the spinal stimulator. Makes me feel sick thinking about it. Hated TENs after recommending it to pregnant women for years and think it's a similar sensation. Re injections, my Dr Pain seems to have tried multiple spots as a test and mutters about doing a long lasting injection if/ when that spot was ever identified as being helpful. How long lasting? Who knows. Certainly not me because I've had enough. Seven attempts at finding the magic spot seems enough. No more.

dwnton... Three weeks???!!! Lord, you are a saint. Never, ever. I've had a variety of house guests for a month but low maintenance ones and hate it. Next week I am finally rid but have the builders in. Blueugh!!!!

queen, this bit is especially for you . Re private care, I have only ever recommending considering this option as a route to bypass the horrific NHS waiting lists for appointments. Never, ever confuse private care with superior care. It is not. Yes, you get a nicer room and better food and crucially, a shorter wait. But, you are a business transaction. If you've paid for a two night stay, you will get a two night stay. Not feeling well enough to go home? £500, please. And more. I had my first, disasterous surgery privately and the bare bones of the catastrophe that followed was that the surgeon ran out of paid for theatre time and was rushing.

You ask whether an nhs surgeon who said 'no' to surgery should operate privately. If that happened you would do well to run a mile and then keep running. And report to the GMC. Any surgeon has to be prepared to stand up in a court of law and justify his actions. Ability to pay should not be included in this. So fine to see the chap privately, fine to decide to have surgery privately if it is recommended but the nhs will be a long wait. Not fine to have surgery he can't justify on the nhs.

Hope that makes sense. I feel really strongly about this, can you tell?

Waves to all, old and new. Have a nice day.