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.

Hello everyone, sorry been quiet, been busy juggling too much as usual, spent a day with one of my best friends, took her 8 month old (whose birth I was at) to the park with the children to give her a break, they live at the top of a hill. I shall walk! I said. Erm, lovely on the way down it on the way up with two tired children and a pushchair with their scooters on, wow. I now fucking hurt. My pain levels have increased lately, and not really settling, like you matilda. I suspect I am doing too much.

I am the iPad and it has a mind of its own, but DH has a friend popping over this evening so I will take that opportunity to go and get an early night and will say hello to jasmine QOD and others who have joined us recently, and see if I can be of use! sorry you need to be here but we all know what it's like. And there is no competition for pain, none of us have the upper hand when it comes to back pain.

Evening,

I'm having a large glass of red after confirming it was a muscle relaxant. I'm down to my last three diazepam and don't fancy calling the GP for more. Long day driving to the sea side with the kids and back. Being in the car is something I try to avoid it's really not good. My wheat bag may come out, something new people will hear lots about, although it's too hot for many we do have a cool home thankfully. I can't really tolerate NSAIDs either but opiates are fab for me and gabapentin eventually but my head is a little foggy, especially with words.

I was told investing in a back support band, the Velcro elasticated type, would be a good idea. Physio seems to be helping too, just knowing how to do stuff in a better way.

I'm waiting for surgery for my L4/5 as it's a huge herniation with risk of CES. I'm struggling with getting a choice of surgeon - lots of surgeons should be available via the NHS in private clinics, they have been approved for funding. My local commissioning group is not allowing this choice so I'm fighting it. I will be sending my letter to the MP on Monday. I'm having a friend stay who has a PhD in English lit so she can check it for the grammar stuff.

Milly, I often feel similar. I do have some strong pre children interests but it's so easy to lose confidence. Doing courses is good or taking up a new hobby, it does add to a sense of identity. Find something, even listening to the radio helps me. As for weight, I find diet is really important and lost most of my baby weight without any exercise. The wii fit was good and mostly gentle, I used that to get the last bit off but I have gained some back :(

oh goodness yes yes to red wine. Alcohol in general is good for back pain I find , as in it numbs the pain. But, red wine actually does have proper medical anti-inflammatory properties. Although still not appropriate to have a glass or two before work

Good luck with the letter to the MP. Hope it is successful. It does seem that it gets hcp working a bit quicker, at least to start with. the choose and book system is such a farce. I don't get why it's just not used as a matter of course. I was re-referred back to my local hospital where I had surgery, for my second opinion, instead of the referral service contacting me to ask where I wanted to go/give me the choices. When I questioned this I was told that most people don't want choice, don't want to travel, prefer to just go to the local hospital, so they do that, and only offer choice when it is asked for! Of course, you are not even given that option it seems, but I couldn't believe that she really thought it was ok to remove choice unless it was asked for, but also to not advertise that the choice could be asked for. If I had not asked, I would just have been given the same answer from the same surgeon about what's going on with me and would potentially have just accepted that.

QOD you certainly have lot of paint to deal with so sorry to hear it's all so crap. re NSAIDs - can you use suppositories? Ibruprofen and I think naproxen come as suppositories if you cannot take them orally. I don't know if this would still cause problems with your stomach, but as the risk is due to contact with the stomach, a suppository might be the answer to some of the inevitable inflammation caused by the arthritis. Diazepam is also fabulous for muscle spasms that are caused by the pain, although, as you probably already know you need to keep the dose low, for short term use only and used with caution.

The weather is awfully hot, so heat is not the best thing to be suggesting, given that it might actually boil us! but, when the weather stops being so hot, lots of us find heat is our saviour. I know that ice is a great inflammation reducer, although I am personally not a fan as it's more uncomfortable than heat on the back, but, in this weather it might be worth trying (for me as well!).

Re: work. Sitting down is probably the worst position to be in when you have back problems, in particular when it's related to either the discs or the vertebrae (or si area) as these are load bearing and they take, can't remember the exact figure but something like 3 x the load that they take when standing. It's a huge problem for me. How are you managing at work at the moment? Have you spoken to them already about difficulties sitting, what adjustments have been made or offered/suggested? what other support have they offered - chair, OH referral, adjusted hours, moving files to be easily reachable, agreed more regular breaks to get up and move around? They must provide you with adjustments, but you may already have some things in place, so before i bang on about it too much i will see what, if anything is already being done for you. I have hydraulic/electric standing/sitting chair, which means I can alternate between standing and sitting as I need to, to ensure I move regularly but continue to work without increasing the risk of RSI, as I was, for a while, standing with my keypad etc raised by me with files. It was already spare in another office so no OH was needed but I was told if it was not available I could get one via OH. Certainly a proper chair is the minimum needed, as are regular breaks. Not always easy at work I know.

jasmine definitely get your pain meds reviewed as a priority. When you say on the basic analgesia, what is that? I agree with matilda that pain clinic can help address this, but, you may have to wait a long time from referral to being seen, so, in the meantime, you can have this discussion with your GP who can prescribe as well as the pain clinic, and has a proper pathway of care s/he should be following in terms of pain management and treatment options.

When I first started having investigations and treatment other than painkillers, 2.5 years ago, I was referred to an NHS osteopath by my GP. I have not heard this happening for a long time now, and certainly have not been referred back there myself, has anyone here been to an NHS osteo, or is this phased out now? It seems that there is hardly any treatment routes via the GP anymore, the osteo was a 'primary care' route and they could do acupuncture, massage, caudal injections, arrange MRI and diagnose/treat to some extent, and/or then refer on to the spinal pathway teams if needed.

matilda you mentioning paracetamol reminded me. My pharmacist friend, when I asked some questions about pain meds, said 'the most important medicine to remember to take as your baseline pain relief, the maximum allowance of paracetamol daily. Everything else is to be added to this not replace it'. Confirms what we have been saying on all the threads

milly I so understand what you are saying about no life. This shit eats up any spare time I have. I absolutely adore my children, but, I anticipated that although they would use most of my time, the little time that I had left to myself would be for me. However, all my hobbies are/have been active - surfing (well, falling mostly), bodyboarding, kayaking (my kayak is at a friends as it upsets me to see it in the garden), swimming, running. I pretty much had to stop it ALL. I went through so much agony about it, for a little while it was actually like grieving, I would cry myself to sleep some nights knowing that I could not go back to that in full force, even if I got better. And, I haven't really get better, not yet.

So, I have no hobbies. Apart from talking to you lovely lot! My little bit of me time is now taking up with laying in bed, or flat out on the floor, trying to recover and cope with the pain from the normal day to day routine of life without all those other things in it.

I have recently however said, fuck it. I do say this from time to time and go nuts, end up in bed completely messed up and review that statement but, I have changed my outlook a little, and tried to do more. And accept the payback. But, I am suffering at the moment for doing this. I went camping, I cleaned the house for MIL's visit, I pushed DS on his bike this week, I walked too much, I walked up a hill today, I have done too much driving. And, unfortunately it's taking it's toll. But, I am going camping again next weekend, and it's near the sea, the water is 21 degrees in Cornwall so I have to go in. It will be near surf and I WILL go bodyboarding. I have to do it.

But, it's not the same as regular hobby bodyboarding, when I would jump in the car after the children were in bed and have a quick go, or after school on the beach I would nip in. I don't 'nip' anywhere now, it takes too long to get into the wetsuit (and standing zipped up hurts as it straightens me too much!) and I can't get out of it on my own. I can't take the kayak on my own anymore, have to rely on people to do anything I like.

I am not sure what the solution is. I am so sorry I can't help you with that, as I am also there, but I can hold your hand through this shit time, and offer one helpful area of distraction. Internet shopping. Although, having just received a letter from WTC peeps telling me they have massively overpaid me, I suspect I will be doing less of that

oops. Sorry I posted WAY too much.

Can you guess why? It's that time of Night!

Chin chin. White for me, though. Love the long posts.

Hope the new posters have stuck around to read the replies and are doing ok.

I have hydraulic/electric standing/sitting chair, which means I can alternate between standing and sitting as I need to... in my post largely directed to QOD, it would read 'desk'!! not chair...

matilda I like both red and white, depends on my mood, the weather, what I am eating. For general sipping I prefer Marlborough Sauvignon Blanc (or Sancerre if I am honest, but that's not too regular!) if I am going to have more than one glass, as red wine gives me more of a headache the next day these days, but, if it's Pinot Noir, then that's my downfall as I can drink too much of that quite easily if I'm in the mood.

Strangely though, I am quite into Pilsner beer right now. Think it's to do with the weather. I absolutely love Staropramen beer, (don't like lager like stella etc) and the bottles are a good size so I can have two without it affecting me even on these meds, and sometimes I can have more! I don't actually drink much any more, sometimes go for weeks having the odd glass of wine and that's it. But I've drunk more with MIL here, as she likes a drink every day, although less than she used to, which is good as sometimes I used to have to say 'no more!' if I had work the next day! Went out for a dinner party at a friend's house with DH and some others a week or so ago, and I drank 5 bottles of beer and felt fine, although I had taken tramadol (slow release) earlier. I took a chance as not done that before, but I didn't really even feel drunk when I would normally, and DH assured me I was not acting drunk (in case my perception was out!) unlike the hostess

Pavlov thank you. I wish you lived near me, it's always warm enough to get in the water and dh's cousin has a surf hire shop, s you wouldn't even need to look at the stuff when you couldn't play. You could just pop along and grab stuff when you were well enough!

That is the challenge. Have probably posted up thread but I have an emotionally demanding job and exercise was my relief and release. I was at a real low point last night I guess, my fuck it attitude from the week and my excitement about Pilates earned me two days in bed. And I am just so sad. Not sure how to approach today. I can't bear the thought of another day in bed so may try to lie on the beach instead ... Could do with being out and about for my mental health but have to go to work tomorrow so will have to be careful.

I seem to lump it all together so the lows are really low. And I miss the nhs!

Anyway today has to be more positive....

millie oh that sounds lovely, living by the beach and surfing etc without it being my yard after! and a cousin with a surf shop... there are worse ways to live! I am thinking that the warm sea will be really good for me actually, which is why I want to go in, it's not cold so shouldn't tense everything up, and maybe loosen me enough to bodyboard without fucking it all up badly. But, I got to get into the sea first! Least I won't need a wetsuit on this time.

I have found my fuck it attitude seesaws badly. I go 'fuck it' go all out, then spend several days in bed going 'no, this is not my life, this is not how it should be'. So, I am trying hard failing to be less All or Nothing and pace myself, but, as you are finding, that pacing is not a huge amount more than Nothing so not exactly going all out.

It's harder with demanding jobs, because, in themselves, they take it out of you regardless of other issues going on. My own job is emotionally demanding, and I am to a large extent responsible for the safety of the public in how I administer my job, so I have to be on the ball. Work gets the best of me physically, as between 10am-2pm is my best time, they also get me emotionally, as I have to fight through any pain and ignore, ignore, so by the time I get home, I am Done.

So, if we lived closer, we could do knitting and stuff

I don't know how to approach it, but, laying flat on the beach sounds better than in bed although, how are you on the sand? I struggle with sand, as it's so uneven and gives way without warning. I do wonder how much is psychological there - not that it doesn't hurt, but that, I am so scared/cautious of falling or jarring and doing more damage that I tense up and so when I do stumble it hurts more than it might otherwise do. Don't know.

Can be a bit unsteady on sand but if I relax am okay. I walked at low tide the other Sunday for about 12k and only paid for it that evening. I need to really relish the times when I am well I think. It is so peculiar that these relapses are so severe....

Hmmm I know what I would be advising if I was talking to a staff member or a client .... But practising what you preach, now that is a challenge!

Oh also ladies, when I am in this awful acute stage my hip kinks out quite noticeably (even to others who i have said nothing to) to the left. Anyone know what that's about?

milly, I would suspect that the hip kinking out is due to muscular spasm attempting to protect your injury and pulling your spine to one side. My injury is on the left but I often get hideous pain over my right upper hip/ side area. I've been trying diazepam for the pain recently through pure desperation and it's has worked quite well. I am never pain free and always have to be very careful, but it has allowed me to keep moving.

The whole thing is a total head fuck as we've said many, many times. So multi faceted, so draining and so very debilitating. I'm determined after my recent GP visit to try to get things on a more even keel. I'm going to find a private pain consultant, one who doesn't just want to do injections which don't work for me. I'm also considering the patches. I'm wary of all this because I know my pain is permanent so do I want to be on strong opiates for ever? No, but I can't stand the pain, either. Or the thick headed stupidity and drowsiness. After tramadol yesterday I was only capable of lying on the bed snoozing so that's no good. I'm usually ok with it.

Have a good day everyone. Let's try to keep ourselves from depression. I've been a bit worried about that, too recently.

Milly, my knee goes in on the right side a lot, it feels abnormal when the physio adjusts it to straight. I feel it may be due to muscle tightness causing the muscles to pull the leg out of alignment. I also wonder if the way I sit with knees crossed adds to it, the right knee is pulled inwards and I feel more secure in this position. The physio has given exercises including one where I lie on my back, core engaged and knees up. Taking turns each side I slowly rotate the knee out and stop and return before the pelvis is twisted out too.

Work have finally bought me a bum cuddle cushion as we call it, memory foam and a cut out for the coccyx - I had bought my own but wanted them to pay for one too, desk assessment took forever and then they provided me with a hard foam wedge with the coccyx cut out! I was like, you do realise this is even harder than the chair??. Luckily my manager is great pals with the finance directors PA who said "tell me what you want and I'll get it"
I am desk based BUT I can get up, stand up and move about when I want, it's phone based and I have a headset so can be movin round. I take frequent loo breaks just for the walk!

The PA has said to just let her know if I want anything but I don't know what I want or need .... I can get up and down easy currently. My main problem is my bum/nerve, the back is worsening since I stopped running 13/15 odd miles a week spread over 3/4 sessions, so when I go back to that, but probably around 10 max, I'm hoping my back will loosen up.

Sucks getting old?!

As for the suppositories, it still ends up showing up in the stomach apparently, so that's out. I have voltarol gel which shows up in very small quantities so should be ok short term.

I'm hoping when the nerve lock is done, I will be back excercising and loosening up? At the mo, I'm cracking like a wishbone when I move

Thanks for the support and help folks!

Thanks Matilda ... May have to ask gp about diazepam. The pregalbin works v well in a general phase, but nothing but laying flat when I have one of these attacks. Well laying flat ibuprofen, paracetamol, pregalbin and heat patch. I am afraid I lost to depression this weekend....I could easily work at ho e to or row as I have a desk day. But am afraid of being by myself so am going to go into the office. Pain is better than sad and I can ask a colleague to drive.

Cross post, thanks also queen

Yes, mixing with other people is vital. Getting isolated is almost a certain prescription for getting depressed. I know all the staff at our local shops so eve, having a little chat with them is better than nothing if I don't have any friends scheduled for the day.

I can't wait for this phase to pass. I'm good at managing the normal pain levels but I feel out of my depth at the moment. And of course, we all look perfectly ok. I need a flashing red light attached to me saying Do Not Touch! Lovely young guy in Sainsburys just helped with shopping. ,ost are really nice but asking for help is so hard.

Now have Neice and nephew for the day. I've managed to convince them to play with our huge Duplo collection. Long may it last...

I went to a hot tub party last night, was sooooooo lovely on my back!, think work would fund one?

Thank you for the replies, it really helps to know that I am not alone and can talk to you all.
This is all quite new to me and it is a lot to take in.
For pain meds I have Naproxen and then also take co-codamol which earns me plenty of dirty looks from the pharmacist when I buy them over the counter, lovely. Although the best relief is a hot water bottle on my lower back which interesting in this hot weather, am drinking loads of water to try and stay hydrated. What is a wheat bag?
Might also try the red wine!

I had not thought about a pain clinic referral so will also look into that.
I am another with a hectic full time job which can be either desk work or fairly heavy duty active work. My employers are really supportive so I will book my workplace assessment to address my desk area.
Siting and driving are both really uncomfortable so any advice would be welcomed.
I am only really beginning to understand the reality of back pain and its long term effects . You are all lovely brave ladies that have been through so much, it is really comforting to talk to you all.

Jasmine get the cocodamol on prescription and if you pay for your prescription and they are starting to cost a lot get a pre payment card. Google and you apply and pay online. The pharmacist looks at me with a lot of sympathy now!

The red wine worked well, I didn't take the codeine at 10pm as planned.

I don't know how I'd cope working. I'm at home with the kids full time until September and there's lots of stuff I have to do that hurts but I can lie down and change position a lot. I suspect it is harder mentally being stuck at home as work is an automatic getting out of the house and seeing other adults, and having a bit more identity than just mum. As I can't get to the park etc I struggle and I'm sure my depression would be less without this condition. If anyone else struggles emotionally there are counselling services via pain clinics and here I have been offered a support group. I didn't accept as I'm convinced I will get better, well less convinced writing it at the moment but I am going to fight so hard to get fixed and do what it takes to get myself better. I've spent a lot of money already so happy to spend more. Still haven't asked my mum as I resent having to pay for what I am entitled to receive for 'free' even if it's not my money. Right MP letter tonight, anyone know if the MPs are on holiday now? Our MP will only meet people for personal issues, like me, but the wait is many weeks so not helpful and no indication of when these are running.

Have a lovely pain free day everyone!

Oh and Matilda my eldest is big into duplo finally, it's great.

hello all,
hope you are all doing okay and having relaxing sunday- we are putting off the leisure park trip until tomorrow as here in Darkest Northampton the buses only run every hour and a half there on Sundays! we all had a brief shopping run in kettering but I took DHCodeine before I went- kind slightly in anticipation of more pain, I try to avoid that, but if you miss the window it doesnt work. Just had leftover indian and a raspberry frozen dacquiri for late lunch, toddler asleep upstairs, pre-scooler(until sept) watching number songs on the laptop and I'm in the swing seat outside with some sun and a slight breeze- life is good in these moments.
still getting quite bad bloating when i eat alot of the time- is it related to the gabapentin??
we come back to London on Tuesday, of course I miss home, my bed, etc but I don't miss the daily stresses, having to sort stuff out while feeling incapacitated, etc
Feel really tired al the time.
Thinking of going to visit my beloved Aunt in Hull- haven't run the idea by her yet but we get on very well, are close, I lived with her and her late husband in my teens for a summer. My dh suggested it today, weird as I had the same idea last week but forgot to talk to him about it. I loeve her very much and I don't see her often. all this stuff with my dh's sister passing has made me think to seize days more and see more of people I care about.
On that note, I had a wonderful evening with my 3 siters last week, we chatted away, had lovely food, nice wine and the evening whizzed by!
That is a problem for you Jasmine about driving being uncomfortable- I guess your work probably wouldnt run to a chauffeur as part of your assessed needs but getting a better desk would help- pavlov has a good one, see her earlier post above.
Had a birthday party for mil last night and through conversations with her family found out almost all have back probs- I suppose the age range makes it more likely. Mil's sister has Ankylosing Spondylitus, she says they cannot do anything- just told not to lift more than 2 pounds! and even physios say they cannot help or may make it worse. she says she has got used to it being quite bad all the time. now and again she takes codeine and p, but it's not 100% efefctive. Hope my kids dont have a hard time- I will have to nag them to take care of theirs all the time! didnt do me any good though, i did try to ift from my legs but now I'm not sure- surely you cant make a disc bulge just through improper bending ?
I had better do my physio today, as i havent done yoga or pilates since Monday pm- have to keep it topped up, and stay in the habit.
they do "yogalates" on a saturday so might try that next week. everyone stay painfree as possible. I think my problem is much milder than most on here- so hats off to you all dealing with it, I find this level of it bad enough. Sometime things get better so gradually it's hard to see it, or think it will get all the way

I am not sure I can go to work tomorrow. My pain levels are so high. I have intense stinging in my back, buttocks, legs, in particular my right leg into my calf. I can't stand for too long as it hurts my back, feels like it's collapsing on itself (I know it's not, but it feels like the vertebrae L5/S1 are pressing on each other), my feet hurt and swell around the toes/go red/throb. I expect I will end up with varicose veins at this rate too. If I i sit, the sciatic pain increases from stinging to stinging and stabbing, hard cracking feeling in my but/hip, pressure in my bowels, some numbness in my foot (right) and some numbness in my butt (which passes after I have stood for a few minutes). If I lay down, most of it eases, but it is all still there, the residue pain in the back, the stinging, the feet throbbing from the weight being taken off them, the calves spasm and one of my toes twitches.

I Am A Mess. I can work, but it will be so uncomfortable. On friday I did it, had to concentrate on something humungously serious that was going on, make some very quick decisions and do some almost literal running around. I needed to work fast mentally and physically and it was such hard work as I was struggling with pain, needed meds and no time to take them, and by the time I left I was pooped. That was two days back! The problem is, most of my work will be like this now and not always decisions I need to make right this second, but lots of the will be, and lots of them are quite high needs in terms of time as well as risk, so I simply cannot be off-guard. Now more than ever I need to be sharp, but I also need more meds to cope with the pain.

But, our team is tiny, the slack being carried my colleagues will be immense. It won't be simply seeing some cases. It will be doing work to manage risk. Or not. In my absence.

I am fighting the nortriptyline. I did take it as I promised the GP I would, for two nights, but then no more. I just don't like it. But, neither do I like the leg pain