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.

I hope it goes well Pavlov. Does your GP let you discuss stuff over the phone? It's so much easier than going in for an appointment, especially with a child in tow. Your symptoms are really worrying, considering all the stuff I've been told about getting to a&e. Any signs of CES and get to the nearest hospital - actually nearest hospital with a&e and neurosurgeons. I hope you aren't travelling too far. A rolled up towel under your bum (keeps you hips higher than your knees) and a wheat bag on your back may help in the car. I hope the injection discussion goes ok, I presume it won't stop the numbness or muscle spasm but it may give your body the chance to relax a bit. I can't help thinking surgery is the only answer really, something to stabilise everything. I hope you do find the surgeon. If the surgeon we were trying to go to gets back I will let you know. He has a base in an NHS hospital too with a wait of over a month but under two I think.

I will be super careful. I was over doing it I think. Wearing the wrong shoes - trying on summer clothes too. Long hot shower helped. Bladder is definitely odd but still not going to a&e as I suspect it's the amitriptiline partly. Probably ought to put on the support belt while in the house. Now summer is here I can't hide it under coats and it looks terrible, especially around my flabby tum and muffin top.

Milly - I'm not at all a fitness freak but I was in the gym before my MRI and I was told I could carry on if I was careful. Exercise in water, the cross trainer, cycle machines and Pilates type exercises. Lots of gentle stretching is good. I saw a physio last week and have a few exercises, although one feels bad, it's a squat but onto a chair. So I sit and stand repeatedly. I have a band of really tight muscle at the top of the pelvis and that's my warning alarm when it hurts. Another I am safe to do is a step machine, I have a mini one at home, as long as it's set lightly and I stand very straight and hold on to a chair on one side. I suspect doing it wrong set off my last horrible spasms so it's good to get someone to watch to make sure you do it right.

thanks queen and millie. numbness still there but coming and going. I do think it's not fabulous, but I am going camping, and that is that! It can wait, I want to live my life. But, I will absolutely go to A&E if it gets worse, other signs become problematic. Promise. Torbay hospital is closest, but my local one is not far, and nor is Exeter so will probably go to Exeter if I can go anywhere, if needed, as there are fab surgeons there. It's only just under an hour's drive away i think, as long as we don't get lost, and we ill stop on route.

Hope you all look after yourself this weekend, we probably won't have coverage so I will speak when I get back, enjoy the sun, positive vibes and low pain wishes to you all xx

For years couldn't sleep through night as back pain woke me up. Agony to get going in the morning. Discovered one thing that allowed me to sleep and get up in an easier fashion. I lay on my back and put a pillow under my knees. This allows the bottom of back to sink more into mattress. I used this for ages. Even on holiday I used to ask for an extra pillow. Later, looking through a book on the Alexander technique I found a similar suggestion. I believe that was performed on the floor with books under knees. All I can say is that it changed my life for the better. It is worth a try if you have wear and tear etc.

Wishing the Pavlov family a wonderful weekend. Camping is so evocative, we did loads as kids in the New Forest and though I'm not really up for it anymore, I still have fab memories.xx

Have a good weekend, pavlov - & take care!

Hi, happydays - I use a pillow under the knees, too, or between the knees when I'm on my side. It is helpful, but I tend to change position in the night & wake up with the pillow on the floor!

Ha, lying on my bed with pillows under knees as I type. It's an old but effective tip.

I'm having lessons in Alexander Technique and early days, but sensible and obvious but still quite hard to put into practice.

I like sleeping with a pillow or even a duvet between my knees but on my side. Sometimes saves me from needing more codeine. The pillow at the MRI was very comfy while lying on my back though.

Well I got the drugs but I feel awful. I'm trying to figure out why it took so long to get here. I'm a bit heartbroken at the wasted time being in pain when it could've been resolved two years ago. I wish I'd got a private MRI when suggested by the first physio. The kids have suffered a lot too, especially my eldest who never stops moving, the little one is happy with cuddles which I can do.

Apparently I'm an anomaly because I have no weakness or numbness just pain. But this GP is more positive about surgery and has patients who've been similar. I can call the pain clinic if needs be and if I want a second opinion after the app with the surgeon I can, although I will go private as I'm sick of waiting, why the hell did I decide to wait now, I should've gone private immediately. I have little faith in the NHS, they care more about saving money than saving patients. But I do have those drugs, enough to get me to the end of this wait I hope.

Queen, glad you got the drugs. Was it just supplies or are you trying something new? Funny you are so unusual to have only back pain. So did I. Wouldn't have thought it was so unusual. It just depends on where the prolapse is bulging on to. Gps really aren't experts on this. They make referrals but can't diagnose discs and definitely can't predict what a surgeon might say.

Re the sitting standing thing. I was asked to do this as part of an assessment at the start of my pain course. It started a big flare and certainly isn't a good movement for me so be careful. Once again, physios aren't the experts they make out sometimes...

Back from a totally exhausting and totally pai provoking trip to see consultant number two this week. Am feeling hopeful that at long last The Letter regarding my Ill Health Retirement might get written. All so hard.

Oh, I really hope you get some results this time, matilda. Shocking how much effort you've had to put into getting someone to write a letter that would take - what - 10 minutes?

Hope everyone has a pain free night. I'm feeling sleepy & strangely calm with the pregabalin - no worsening of side-effects but no relief in nerve pain yet either. Am on a v. low dose this week, then supposed to increase incrementally over next 3 weeks.

Hope your (new?) drugs help, queen. Are they nerve drugs?

Hi loon, can recognise the strangely calm side effect of pregalbin., yesterday I dropped the contents of the bin on the floor, and instead of saying fuck I found myself saying/feeling nothing and calmly getting on the floor to sweep it...considering this is painful I felt nothing... Weird...

Can you tell me a bit more about increasing the dose... I have a low dose of 75 mg twice a day, gp said if it doesn't work double it...but I don't know how it is supposed to work iykwim, is it supposed to leave you pain free? How long should it take to work?

I get the calm thing on gabapentin, rather more zen than my true disposition. can't comment on pregablin doses but I increased the gabapentin very slowly. Nothing like doubling the dose. It takes a while for the blood levels to rise to a therapeutic level so give it time.

Well, The Letter. After a very stressful journey ( think very nearly running out of petrol in London rush hour with every single petrol station on the sat nav converted in to flats or just derelict) the consultant had an emergency so were seen at 7.30 pm. Nice of him not to cancel us at that time on a Friday.

He looked all through his computer records to remind himself and checked all the letters. Dr Fucking Pain who assured me he would 'ask around' and get back to me blah blah, had actually written to my GP the second we left the room saying he regrets he does not perform these assessments. Wanking liar. Can you tell I'm cross!

Anyway, nice surgeon who did my operation, gave me a quick neuro exam said sure he can do the letter if he gets a request with his name on it. I can get the assessor so to email that on Monday so finally, finally we have progress. Was so exhausted by the time we got back but it was done.

I'm going to complain as soon as I have that letter. For six long months the Pain doctors have been binning all the letters from the nhs pensions agency and when asked I person just told me barefaced lies.

How anyone with less inside knowledge plus the ability to pay £300 for a private appointment could get through this 'pathway' is doubtful. Might copy in my mp with my ranting.

Rant over.

Matilda, sorry you're having to deal with such a pack of lying bastards. It's disgraceful. Yes, copy your MP in to any letters - good idea.

Milly, I have to confess to still saying fuck quite a lot - not sure if even pregabalin is going to do much to modify my language! Anyway, re. dosage, I'm starting on an incredibly low dose of 25mg x 3 daily doses. After a week, I'm meant to increase to 50mg x 3. Then after another week 75mg x 3, then 100mg x 3.

Not sure where my GP got this from, but she seemed to think that 300mg per day is the optimal dose, but that it's important to build up slowly. I'm supposed to ring her secretary after a couple of weeks to let her know how I'm getting on. I guess that if I do get decent pain relief on a lower dose there wouldn't be any point in increasing further?

Don't know if it's meant to leave you pain-free. I'm assuming it's meant to target the nerve pain specifically, but that it's unlikely to do much for, say, pain from muscle spasms or inflammatory pain in the back. Most of my pain is leg pain - I have a disc prolapse & nerve impingement - but I honestly don't know if it's all nerve pain. I know some of my leg muscles - esp. hamstrings - have tightened up like mad since this started, & they might be contributing to pain too.

We have the same thing I think loon ...but not sure the gp i saw would be an expert in pregalbin... And I guess you are right, hard to distinguish the different types of pain , wonder if I can add in some ibuprofen?

Most of my pain in my button and top of leg

Bottom not button obvs

Milly, yes, you can certainly take NSAIDs at the same time as pregabalin. And paracetamol & codeine, though codeine could increase the drowsiness side-effect. It doesn't have that effect on me, anyway, so I'm still taking as & when I need it.

milly if you look on op the other thread! I posted an epic post that detailed the different drug combinations that you can take for maximum pain relief! what can be taken with what. Might be worth taking a look.

I am back from camping!!!! It was a bit stressful the first night as the children were overexcited, tired from the night before, followed by being Attcked by seagulls when we stupidly decided to eat fish and chips by the sea! and an early grumpy start on Saturday morning but firs thing Saturday morning, dd and ds made some lovely friends, and we made friends with their parents and two other families. It was after an initial stress time, an absolutely lovely weekend and wish we had stayed another night. Beautiful weather, a lovely swimming pool, which we swam in almost empty on the first night, so warm! And spent all day there today before coming home. The campsite was fabulous, beautifully green, clean, well looked after, well organised, enough space between pitches, lots of green space that was car free so the children could just run and play and we were right on the edge of the car free area so the children were so free to play. We didn't leave the site afte the seagul attack as there was everything we needed, even the provisions in the shop on site was not overpriced, beer in the bar was cheaper than our local, there was a craft room which we never made it to! We listened to a guitarist playing crowded house and similar style music last night while the children played in the park, sleeping ds in my arms, then fewer we tucked them in bed, DH went back to the bar to watch the England match as they opened late just to show it. Our soul pad was beautiful in the night, a beautiful bell tent with soft fairy lights around the door, twinkly mobile hearts hanging from the door and so I drank wine on my own for half hour in a peaceful Campsite before going to bed last night. Bliss. And the children both slept like logs and ds didn't want til gone 7:30am this morning.

So. To my back. Well. Camping is absolutely not the best thing for a bad back. It is virtually impossibly to not help with setting up and down, moving, sorting stuff out etc. and I did walking, swimming, walking about checking on children, too much siding and drinking coffee then wine, bending to get into the tent (although head height is fine once inside), and not to mention not wanting my back problem to be the focus for new people, so probably tried too hard to be 'normal'. Actually the people we met were lovely and asked about my back so once they knew a bit, I felt a liltle less like I had to hide my difficulties walking, but still didn't want to be felt sorry for. I hurt a lot. But the swim this afternoon eased the horrendous back muscle spasms and so the pain is largely leg pain, stinging butt pain right into toes etc. the bed was fine, I was sore and stiff this morning, but I expect that would have been the case whatever bed I slept in and I as happy with the bed as I can be with it being low to the ground.

On urge good side, the numbness has not got worse, although not improved either, let pain worse but to be expected I think following this week. I suspect tomorrow I will be experiencing huge pay back!!!

matilda This consultant that you have paid to see, you saw him as an NHS patient didn't you? It am absolutely disgusted that 1) the pain clinic consultant failed in his duty of care so shockingly, and not only that, but lied to you about helping in some pathetic way and

2. that the other consultant, who you saw in NHS capacity charged you a private fee, to see you in person to discuss the content of an email, that in essence was asking him to provide information requested by another government agency. That's wrong on so many levels. I mean, great he is helping. But, it doesn't really make him lovely, it makes him fucking greedy. A short appointment to tell you something he could have asked his secretary to do and he charges £300? He is laughing all the way to the bank. He didn't need to see you to make the decision to help, he could have emailed you back with a promise to review your notes, and what you needed to do (get ATOS to write to him). If he saw you as an NHS consultant, he should respond to this request as an NHS patient. Basically, one government agency is asking another government agency for some information for you to access your government owned pension that you contributed to as a government employee, and the only way a government paid consultant will provide this information is when you pay as a private patient. It's fucking immoral.

The reason the pain consultant refused to see you privately is because he knows it's fucking immoral and quite possibly professionally unethical to do so. He is a fucking dick for knowing that he can't give you the information privately because he should be providing a letter in his job as your NHS consultant, yet refusing to do it. He is not just immoral, he is not doing his job, which is to share information between agencies as required for medical purposes. It's not unique to medical professionals, all government agencies have to share information between each other, this is no different. And it being ATOS is irrelevant as they are acting on behalf of the government agency. If he had taken the time he took to write to your GP to write to you, to just send the letter needed, this would all be done by now. But he can find the time to write to the GP to prove some ridiculous point that he does not have to do anything that does not involve sticking needles in patient's backsides, but that's not true. He is not God, he is a man with some qualifications who has obligations to help his clients like everyone else who works with members of the public and not use you as a pawn in his point scoring game that he probably has going on with management about some policy to do with working with ATOS.

(And. If I got it wrong about the consultant you are seeing privately being your NHS consultant, then I take some of it back, but not all of it, as he did not need to see you for a £300 appointment to look at your notes and write a letter, once you have done some donkey work yourself, you will still need to go get ATOS to write to him, then probably have to chase him for the info, so he is not earning all of that £300, you are doing it for him).

I get letters requesting information, or a letter in relation to my clients from time to time. It is absolutely my job to provide that information. For example, letter from te job centre relating to courses being undertaken, supervision dates and times to prove they were where they said they were, so their benefits don't stop. Technically I do not have to reply to those, but, if I didn't, there would be consequences. Which would be - they would lose their benefits, they would be at risk of further offending, they would think yet more people didn't give a toss/didn't try to help.

It's not hugely different here. This consultant does not know your financial situation, and neither should he, because for all he knows his refusal to write this letter, which means you don't get an income which you have lost due to your physical health, could mean you lose your house, your finances could take a devastating turn, and it would not be unrealistic that you would have no choice but to attempt to return to some form of work, and the physical and emotional impact of that would be significant. And that impacts on his job. Because he tells people to adjust their lives or whatever, but will not help them do that.

and, in my job, while I would not lose my job for failing to respond to a letter asking for that kind of information, I would be so unprofessional that I would have to ask myself why I am there doing it, why I don't want to help those people in question.

OK. Rant over for now

queen how you doing?

Denial tough maizie downton you are all quiet, hope you are ok? And, we appear to be missing people on this thread, I might go send some PMs to get them over here in case they can't find us.

pavlov, too tired to respond fully bit thank you from the bottom of my heart . You get it. Actually the surgeon / nhs/private doctor can't not charge because the private clinic charges separately.

I am going to complain so hard when this is over ( will it ever be over). I've been lied to, misled and ignored. It feels even more personal on that I was an nhs colleague brought low by illness and yet still ignored and deceived.

Tomorrow I will be on to these new leads. Whatever I eventually achieve it will be a hollow victory. I am empty..

here reading but have been busy sorting out stuff and with the kids- they are being lovely at the mo. plus laptop still a bit broken-need to take it in to apple store soon.
hope you are all having good,pain -free slumbers

Hello all, pavlov the camping sounds marvellous, just lovely. It is funny that I can leave in central Queensland, where the weather is lovely all the time, but still miss the giddiness of an English summer. There is something so perfect about it.

Goodness I can't believe how stuffed around you have all been, especially you Matilda. I am still waiting for an appointment with a surgeon, which is annoying but at least it shelters me from the bollocks.

In opposition to treatment you have had by professionals, the kindness of colleagues has overwhelmed me this morning, two colleagues have said they will drive me round on Wednesday so that I can take my meds, there will still be days when I can't get help so will have to be drug free. But I am touched by their kindness. Am terrified that I won't be able to work. I am going to talk to my boss today about an assessment.

Hope you all have a grand day

Hi Milly, are you British? Wonder how you got to be in Queensland..glad your colleagues are being helpful and hope you can ask for some workplace adjustments. If not, is going sick an option?

British with an Aussie husband ...sick is in an option of sorts, but I am concerned about not being able to work... I spoke to my boss today and she was up for getting an assessment on my work station and car. They really are supportive, but I wonder for how long?