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 Excinnemon,

I have suffered the same as you and was on all the same meds.

I joined a support group and was introduced to a technique called 'The Alexander Technique'

I still have my prolapsed disc but managed to come off all meds and now I am pain free, just through using this brilliant technique.

Try it.

It is kind of better that I don't have a choice realistically. I can get scared and worry about the risk but the risk of doing nothing is worse, well unless they get the op very wrong. I don't need to weigh up the pros and cons because waiting is quite likely to result in emergency surgery anyway and by that point the damage is much less likely to be reversible. Aside from that I do also feel I have no choice as my quality of life is already lower than normal and I need stronger and stronger drugs. I found a video of a guy having a discectomy and although he's a bit annoying it rung true and he had a successful outcome. The surgeon believed the back spasms were the back protecting itself so will resolve once fixed and the SI pain is referred pain. I will go back if it doesn't work but I can see why people just cope, I've done it for two years and didn't think it would turn out to be surgical.

Exnanny , I'm doing the AT and am enjoying it though I certainly haven't even reduced my meds. On the previous page I linked to a good website with a download of a guided lie down which is very good. Do you see someone regularly or just do it yourself?

Queen, agree you have no choice. I was the same.

Ladies, I'm a bit of a lurker having a central budge l3/4 and L4/5 and putting up with sciatica for 2 years, I am very lucky to have private cover so had a partial discectomy and decompression 3 weeks ago. I just wanted to add my experiences into the mix for those of you considering surgery (as I myself did times of research and scared myself stupid.) it's been so far so good for me. I'm one of those (so far) for which this surgery seems to have helped - my nerve was tethered in my spine so surgery has led to immediate pain relief and improved movement and function. I know it's early days yet (hydrotherapy starting next week - 3 times a week!) And the outcomes can be quite varied and sometimes not great but for me it's seems to have been a success. I'm now going to touch wood a couple of thousand times in case I've just jinxed myself!

Grumpy, how nice to hear a success story. On here by very definition we are often in the failed or not very successful group. I hope you continue to progress and if you are able to update we would all love to hear from you. Hope you are getting lots of support and are lying in the sun as much as possible. [Grin]

Oh, I know you didn't mean that, matilda. And I'm sure you're absolutely right about many of the not-so-successful cases not being followed up properly & slipping through the net. I'm just feeling a bit overwhelmed about making the big decision. I wonder if it's the pregabalin? Am a bit weepy this week - was calmer the first week on it!

Great to hear things are going well for you, Grumpy. Did you have discectomies at both the problem levels?

Sorry, dropped off a bit. All okay here through the pregalbin haze!

My lovely boss is supportive of getting an assessment of my desk and driving to help at work... I am travelling next week to the big smoke and she has been a bit concerned, but tbh it will be easier than real life as I won't have a car or my children !

Been at the beach, lying on the beach is much nicer than lying in my bed, particularly as the sheets smell of deep heat!

The mixed thoughts on surgery help me not stress quite so much about waiting times, must look into Alexander technique.

Also saw psych yesterday, pristiq seems to be helping and she has helped me identify strategies for stress beating without exercise. It's all basic stuff that I happily tell other people, but sometimes taking our own device is hard!

Morning everyone. The sun is shining bright today, really blooming hot. Hope it is where you are. Only problem with this heat is I don't like using heat pads, as I boil!! Going to hang some washing out, but can't do the washing line so DH will do big stuff and I am going to out some stuff on an airer rack. it's actually lovely to be able to do this because I want to, not because I am desperate not to have washing in the house. We succumbed to a tumble dryer last year, at the beginning of a wet summer, had our first winter without washing around the house, and I have absolutely no idea how we managed without it.

Went to the beach after work and school yesterday as DH has most Fridays off (works Sundays usually, gets around one weekend in four off), he cooked some chicken, brought stuff for fajita wraps (guacamole, soured cream, salsa) and the children splashed in the sea while we chilled, so pleased to have some nice weather, but sad to see the coastline around here so battered from the storms earlier in the year, lovely sandy beaches haver turned to rock (great for rock pooling though).

Strangely, I had a very low pain day yesterday, I was moving almost normally, just some stinging in my legs/feet but I could almost ignore that. Hardly any back pain at all, could even bend a bit more than normal, and I was thinking 'yey! I am getting better at last!' Didn't use my crutch at work, just felt normal. Unfortunately it's made the return of the stiffness, and deep back and leg pain today feel more annoying. I am not sure whT changed, a,lthough possibly that I double dosed naproxen for two days before bed, didn't do that last night (drank wine instead), and also, my GP has given me some normal release tramadol which I tried instead of the Codiene as my top up meds in the evening took it night before last. It helped but even the normal release wires me at night time, not as bad as the SR tramadol but still woke lots. I wonder whether taking 100mg sr in the day topped up with 100mg normal release in the evening is the way to go for me, perhaps the night time will settle after a while.

Has anyone here heard of, or tried tapentadol? The pain clinic guy is quite keen for me to try this, he said the side effects are not as bad as tramadol, although I did tell him that apart from wired at night, tramadol is fine for me dude effect wise. I googled it, and it seems tapentadol is stronger, an in between of tramadol and morphine, although some research talks about it being used instead of morphine due to reduced nausea and vomiting as a side effects, it's relatively new and so I am a bit nervous about trying it but it might help the pain more than tramadol, which just does not do enough IMO.

Also, need your advice on Nortriptyline in short doses. Discussed that Nortriptyline does not work at 10ml, I suggested a lower dose, he skirted right over that and said I should try taking it just at weekends (because I don't have a life outside of work...[sarcasm emoticon] Would that work? Would my body get used to side effects if just taking at the weekend or would that seesaw up and down due to the stop an starting? And would it even work ? I thoughts these meds built up in the system so it seems a bit odd to just take at weekends but he seems to think it will work well enough.

milly glad your boss is supportive. I am lucky that I have have supportive employers, and in my new team structure, I have supportive colleagues, it makes a huge huge difference and I am sure without the management being supportive I would not be at work now.

denial meant to say! I am actually pleased that you are off work. Not that you feel so crap to be off. But it's so easy in work to feel guilty for time off, and making ght decision to away 'I can't do this at the moment' is tough to do, especially when you have a job that pretty much only you can do. So, it's great that your GP recognises that and has made the decision for you, hopefully you can take this time to recover yourself a little with a bit less guilt. Your GP is right, you are not superwoman. I hope you have some sun where you are, take full advantage of it as the sun is medicine all of its own. And, whn you approach your two weeks ending, really do consider whether you think you need some more, and if your GP recommends It, listen, as your long term health is more important than work right now.

Yes I am extremely lucky, she is the best boss I have ever had. We were both a bit worried when we spoke to elf and safety and the guy said I needed a doc to say I was fit to work. I want to work and she wants me to work, so we are looking at ways around the problem and duty of care.

You are right about sun Pavlov, it is winter in central qld, and my children have played happily in the sea!

Yes I am extremely lucky, she is the best boss I have ever had. We were both a bit worried when we spoke to elf and safety and the guy said I needed a doc to say I was fit to work. I want to work and she wants me to work, so we are looking at ways around the problem and duty of care.

You are right about sun Pavlov, it is winter in central qld, and my children have played happily in the sea!

I think in an ideal world I would stay off until I've started the humira and it's hopefully working. But our policies are so scary I'm scared that they will get rid of me . The problem with a chronic condition is it's never actually going to go away. it's laughable that my contract states six months full and six months had sick pay but I'm still too scared to take doctors advice and actually use it. injections side affects not too bad so far.

To all those suffering with BACKPAIN.........Please try 'THE ALEXANDER TECHNIQUE'........Am new on here so hope you get this message.

Take care

denial how long have you been on humira? I've done 5 injections now.

I'm not on it yet it's to be discussed at my next rheumatologist appointment this week. I desperately want to try it otherwise I see no relief in sight for ahem the rest of my life (drama drama). How are you getting on with it???

I'm worried this crumbling facet joint is going to be written off as osteoarthritis and used as an excuse not to give me humira. They keep citing that I have "mild" inflammation in si joints that reads as what are you getting excited about woman?!?

I'm only 37 ffs

denial, sorry you are feeling so despondent. pavlov is the resident expert on disability rights at work. But I know only too well how ruthless the hr systems can be. But. Your health is way more important than those box ticking, target driven machines who care not a jot for your well being. Take the sick time you need.

pavlov, yeah! I thought the nerve meds needed to build up in the system. My FIL was given a one off dose of pregablin when his back was in spasm recently and I think it helped. ( he has taken one gabapentin at bedtime for years and swears by it. I'm almost certain it has a placebo effect on him). So, I'm guessing if you take then just at weekend you are only going to get the sedative effect? Haven't heard of the other drug but maybe worth a try? Almost certainly more expensive, so good luck.

My strategy with tramadol is similar to caffeine, I stop it by mid to late afternoon and switch to codeine. I was liking the sr tabs but now prefer a straight 100mgs late morning then late afternoon. My ideal balance keeps changing so it's lucky I have enough drugs to open a small pharmacy.

Enjoy the sun, girls.

Matildathecat......Once I learnt the basics of Alexander, I now just do it myself. Its become a way of life that I have had to adapt.

Came off the meds gradually. Was aware of the damage long term useage would cause.

Take care

denial has a good handle on disability rights I think, she has given me some advice herself! But, I do think that they cannot legitimately start the process of medical retirement while you are trying/waiting to try new treatment as although this is chronic, the new meds may well pick up back up enough to return and stay there for a good while before you need more time off. Are your employers supportive of your disability, not just legally, but are they empathic with it? When was the last sick leave you had? Because realistically, it would be difficult to offer 6 months sick leave then not make waves when you take it and it's linked to disability, especially if it's due to trying new treatment, that would be very dodgy ground. It would be their responsibility to prove they gave you every opportunity available to get to a point of well enough to return, it is not for you to prove you are making those opportunities it, but you can easily do that and they would not be able to say they gave you a fair chance if you are about to start new treatment. And if for some reason you don't get that treatment, you will need to review other treatment, and so they will need to wait for that to be reviewed. You are clearly a hard working, conscientious, dedicated member of staff and that's why you are worrying. I think it's sensible to wait for the rheum appt and take it from there, if you get the meds, you can have a better idea of how long you might need off, but I do agree that it might not be just two weeks.

Why cAnt I say things succinctly?!

I have almost done ALL my washing and dried or drying on the line and airer. Kids bedding is done and waiting to go out. Sat in our
little courtyard for a bit enjoying the sun and watching the bees on the flowers, little bit of colour and green in an otherwise urban concrete jungle

I'm interested in the way you refer straight th medical retirement, Pavlov. As you know I was dismissed and left to seek my own fortune in the application for Ill Health Retirement. Is it different in other public sector roles? Would you then automatically access your pension benefits?

In local government (may vary from borough to borough) the fitness to work policy starts at a three stage process of warnings and reviews with final "discussion of capability and whether ill health retirement is appropriate". Ill health retirement is addressed by an independent doctor (?atos etc all?) and it reads like it's part of the process of capability. Please God I never have to go there but it doesn't sound as grim as the nhs process.In many ways the nhs sounds like the worst public ish employer out there.

one of my problems is I'm too forward thinking.I really need to stop thinking in what ifs.it's hard though.

my last experience of an occupational health referral was very negative. this is strongly influencing my wish to avoid them at all costs.

Hi all, I dropped off the thread a bit, sorry.
I have changed physio and am making progress, slowly. The nerve tingling has started to go away for short periods during the day.

I've continued swimming every day and doing my new excercises 3x a day. I'm off my meds as the side effects were getting me down. Physio said as long as I don't walk with a limp it's fine. When pain is too bad to walk without a limp, I have a lie down.

I stopped working, which has caused me no end of stress deciding about it, but was the right decision. It was only temporary and I want to be pain free again and not compromise.

Seriously missing all my sporty activities though.

Exnanny, will check on AT, have heard good things and suspect part of it is already part of my life.

ex, great to hear you are making progress bit sorry you had to do working.it's interesting how society doesn't easily give people the space that medics and research points to be necessary for full rehab of early injury.

for anyone worrying about steroid injections all of the post injection side effects have worn off.I can't say they have helped yet (early days) but I'm no worse which has been a problem for some people.

The problem with getting IHR with the nhs is that you need a consultant to write to say that there is no possibility of your condition improving before the retirement age of 60. Clearly that's a very big ask of anyone especially the younger you are. So you can be totally unfit to work and have no income but that doesn't entitle you to your pension. Grrr.

I'm still waiting in limbo land for my pip, ESA and pension assessment results. And the legal case grinds on.cant wait for it to be all over.

Hope you are all enjoying the warm weekend and have low pain levels.