More Terrible Back Stories

[Matildathecat]

This is the support thread for all sufferers of back pain. Acute, chronic, agony or niggles, we are strictly non competitive. All newcomers very welcome. (Though be warned, the language can be a little 'ripe' ).

Here are our previous threads:

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues

My story long and grim but basically had failed surgery for disc prolapse, then further failed surgery to attempt to salvage the situation. I have nerve root damage and severe scarring around the nerve at L5 which won't get better. I'm 48, can't work, take a lot of drugs and have a blue badge. Currently battling several different agencies for ill health retirement and other benefits.

But I'm ok, having some fun despite the pain and have made some lovely friends on here.

So come and join us for moans, advice, downright rants or just a laugh.

denial actually, before enough about that…how do you manage it now? Is it under control? Do you still get flare ups?

Wow pavlov you posted a lot! I agree with you that so many people don't seem to know what they are talking about. I had physio which didn't seem to do much. I think part of the problem is that they take credit for any improvement when it is not really down to the physio, but natural healing. My physio spent more time writing notes on how I had improved. Then they signed me off as cured even though I still have some pain and taking all the credit for my recovery. So now they have it on record that physio really helped my back.
Anyway to change subject, if you do have RA, Losty did say the treatment is very good. I guess it is a long process to get tested and diagnosed as usual of course.

matilda that is great for your DS hope it turns out to be a brilliant job.

live i know. tramadol speak plus final revelation that you lot are, as always, most likely bloody right.

Sorry

Hmmm, I forgot about my first NHS physio experience! That didn't do me any favours either. I was 16, I'd ripped something in my L shoulder doing weights (although I wasn't actually lifting any myself at the time, I was holding someone else's legs down and the pressure of their legs did the damage). Anyway - my GP was sympathetic and sent me to get ultrasound of soft tissue damage, but the bloody hospital refused to give me US and sent me to X ray instead which, unsurprisingly, showed no damage
So GP tried to send me to Roehampton hospital for specialised sports injury physio - and they fucked me over as well by giving me bog standard physio person who had no fucking clue and just gave me exercises to do that made it hurt more. Didn't achieve a fucking thing. :(

In the meantime, I spent the next few years systematically displacing my pelvis and lower spine while I carried my heavy bag only on my R shoulder, as the L one couldn't take it. Thankfully the osteopath put it all straight again, but it's one of the reasons that it's unstable, because it was "out" for so long.

pavlov post as much as you want, gives us something to read while lying down resting back! Also you have the best info, one day you will write your own back book that is actually helpful, unlike most back books, and have a bestseller.

thumbwitch that is so bad when GP was so helpful. It must be upsetting to be a good GP and have your referals go wrong like that too. Did i read you are a massage therapist yourself? Or is that work affected by your back problem?

live that is very kind, but unlikely about the book maybe we should all write a collective book, we all have such huge amounts of info from our experiences.

I hurt. Kids are going wild. DH is vaguely managing them by occasionally shouting for them to stop it! (discipline eh?!) I am in bed. Didn't get to sleep tip 1:30am. DS woke me up at 5am kicking and pawing at me. Don't feel too bad tired wise, will get up and start the day in a second.

Hope you all have reasonably low pain days, matilda hope you don't suffer too much from yesterday.

thumb so many times incorrect treatment early on can bugger things up. So a long time for it to have been left

If I did ever write a book I could call it 'The Tramadol Diaries' or something

I'm very sad to come back to posting on back threads.

After 9 months pain free, I'm back to square one and feeling very sorry for myself. Sitting is a nightmare, as you all know. This relapse has come on suddenly. Pavlov I posted a lot on your threads last year when you had your op. It was going well at the time for you, I haven't gone back over these threads, what happened?

Briefly, I have two prolapsed discs, L5/S1 and L4/5. Cancelled surgery twice, as moved house, had to start again etc. was sent to hospital with suspected cauda equina, massive cock ups followed etcetc. Anyway after 12 months my pain disappeared, I could move about freely and my neuro said I was lucky, it only happens to 1 in 10 people after that length of time, but kept me on file just in case of relapse. Well here I am.

Have been to GP, have referral to physio, she gave me some Gabapentin. I had Pregabalin last time but she didn't want to give me that yet ( huh! It's too expensive!) I still want to avoid the surgery if I can. I have read too many stories/know people who it hasn't worked for, or have had to have further surgery after. I got better before, I hope I can get better again, armed with more knowledge and knowing what helped last time.

But I'm scared. Is this it now? I don't think I can cope with months and months of the deliberation and pain. Of course, I will cope! but you know what I mean.

What are these other pain killers you all talk about? Should I be asking for them? No one has ever offered me diazepam or tramadol. Are they more or less effective than the Gabapentin? I don't like codeine, I have some but am not keen on using it long term.

Sorry for the long post. I'm just so fed up.

Oh Downton, we've not met but I'm sorry to hear that you're experiencing such pain after such a wonderful time without. Must be ... quite depressing.

I hope that the collective experiences of many people on here will help you

downton very in mn ey [hug] quick post my lovely to welcome you here. So sorry it is needed, but lovely to hear from you nevertheless. I am off to work shortly so can't post much, I will post properly when I get home (and possibly extensively ) but in the meantime some of the other fab back pain sufferers will probably come on and asnwer some of your questions.

The most important things on here are: we do not compete, all our pain levels and experiences are valid, and shit. We encourage heat, electric pads, stick on pads, hot water bottles, whatver. We eat a lot of and scones, drink a lot of (but mostly virtual as we are all too drugged up to get hammered regularly in rl] and we tend to do far too much therapeutic online shopping for Comfy Yet Fashionable shoes, glam bags etc.

So lay back in our back sufferers recliner and meet everyone.

Oh and one more thing. It is completely ok to moan. and swear.

Sorry to hear you are bad again downton from what I know you can combine gabapentin with other drugs like tramadol and diazapam, so if gabapentin alone is helping but not totally working you could try adding another drug to it. Or you could try a different drug instead if you feel the gabapentin is not working. The one that really helped me is naproxen, it is an anti inflammatory like ibuprofen, and I think I had a lot of inflammation. Again it can be combined with a lot of the other drugs if you need to.

Thank fuck for that! I feel that I have come home.

I have no leg pain yet. That's good as the sciatic pain was the worse thing for me. At the moment it's just radiating out of my lower back into my hips. I was able to lie on my back for a while but last night I got pins and needles and numbness in my foot. I know where that's going. I am doing the duck walk and it feels as if my top half is going to slide off my bottom half. I have no core muscles left. I can drive for about 30 mins but getting out of the car after that makes me cry as I've seized up.

Sitting. On a chair. How can something so simple, that you take for granted, become so difficult?

Walking. This is what helped me the most. I walked for miles around London as it's nearly all flat. Now I'm back in Yorkshire it's all hills. Everywhere. I can't manage hills

Pavlov, if you go to your GP, s/he will almost certainly do a whole load of blood tests before referring you. It does sound like something vaguely autoimmune-y may be going on, so you should really get several blood tests, not just one for rheumatoid factor. As denial said, some types of inflammatory arthritis give negative blood results too.

But you could well just have lots of shitty things coinciding. I've had lots of bloods done for various inflammatory conditions, & nothing has shown up yet. My GP, who got me tested for hypothyroidism (which I didn't suspect - thought I was anaemic) is very thorough, & once insisted on doing tests after she felt how cold my hands were!

I've also had the swollen knees,but that was when I was doing lots of exercise & running a bit (years ago) & they went away & never came back. Had to have tests for sjogrens syndrome last year, too, when my salivary glands kept swelling up randomly. That's stopped too, & I'm told it was probably an infection, unconnected to anything else.

Similarly, my toe arthritis is definitely osteo, not inflammatory. And the back/ leg pain seems to correspond exactly with the MRI findings. So while I'm sometimes tempted to think there must be a single underlying cause of all this crap, I suspect there isn't - in my case anyway. But don't stick your head in the sand, make an appointment with your GP & get the tests booked in. Can you ask for your thyroid to be tested too? It's a common cause of fatigue / poor circulation / dry eye problems etc. And as one book I read put it, autoimmune conditions seldom "come to the party alone". Or something!

livelablove can I buy that or is it prescription?

Unfortunately the GP I saw, I have not seen before. It doesn't help that I've seen various doctors in London and the north so no continuous care. I understand that she doesn't know me and just read some words on a screen. My history was lost somewhere between Queen Mary's and Charring cross Hospitals, which caused all the cock ups, I was admitted, transferred, sat all day with a cannula in expecting emergency surgery, only to be told that as the consultant at QM had gone on leave, hadn't signed a form and so I wasn't on the list.

I have had more fingers stuck up my bottom than I care to mention, as I have lost a lot of sensation in that area. I have no dignity left!

Hi Downton, sorry you're suffering too. Surprised your GP has referred you for physio, when you're already been so far down the road towards surgery. I thought you'd be sent back for another MRI to see what's going on?

Did you ever have injections? I have a disc prolapse at L5/S1, have recently seen the neurosurgeon, & was basically given the choice of trying nerve block injections or going straight for discectomy. I'm waiting for the former now - like you am frightened of surgery. I have a highish level of "functionality" - can walk, quite a distance if I have to - but have got a lot of sciatic pain; & it's been going on 10 months now.

I'm amazed your pain went away after such a long time - you must be gutted to have it back again. And the foot numbness definitely sounds like there's nerve compression, doesn't it? Agree with live that some anti-inflammatories might be helpful. And diazepam is worth a go if the muscles are seizing up. I'm in Yorkshire too, but in one of the flatter bits! Glad I'm not having to cope with hills at the moment!

Morning all. Fucking agony. Full set of the meds before 9am, that's not good. That will be a day trip to London plus a rehab Pilates class. What a Fool. How bloody tedious that such small activities have me wrecked.

downton, quick drugs lesson

Gabapentin is a nerve pain inhibitor. Build it slowly, really slowly. It will quite possibly make you sleepy and dizzy but this should pass. Amytriptiline and nortriptyline are others in this group but taken at night and good for sleep, too.

Naproxen, ibuprofen etc are NSAIDs, anti inflammatories and very useful. Need a stomach protector, though like Omeprazole.

Then you have paracetamol which is excellent. If still in pain a combined codeine and paracetamol should help. Tramadol is another opioid similar to codeine. A lot of us find it helpful.

all of the above groups can be combined for best pain control

Diazepam acts as a muscle relaxant so is good when in spasm as is our old friend heat.

pavlov get thee to a GP, honey. Maybe you do and maybe you don't. Ask for the tests. Quite get that you can't face it. I'm currently pretending my arthritic knee is fine. I know quite well it needs replacing but a. Can't face it and b. Feel embarrassed to admit to yet another tedious health weakness.

Have a good one everyone. I am dragging myself to the park to meet my friend who is kindly walking the hound (sensible modified behaviour ). Then Counselling. Feel she might need counselling after that!

Loon no I was never offered injections. I think I was beyond that at the time. Everyone was amazed at my sudden recovery. I asked for the physio referral as I want to at least try that before I go back to the neuro.

Unfortunately, when this first occurred I paid for some private physio. He did some work cracking my back quite forcefully. I think this made things worse as the sciatic pain came on after that. By the time I got NHS physio they would barely even touch me. I'm hoping if I get to a specialist physio early they can help before it gets so bad again. But who knows.

I probably do need a new MRI. The GP didn't suggest it and I didn't ask. I assume she was working from my notes and could see my two previous MRIs. The last MRI, over a year ago, was horrendous. They kept stopping to tell me to keep still. I was crying in pain having to lie on my back for half an hour. It was just awful. I'm frightened if having to go through that again, I think they would have to sedate me.

Matilda thanks for that. It's only day 3 of the Gabapentin. Day 1, one tablet, day 2, two tablets. Today I can take 3. I had no problems with the Pregabalin and said so but the GP wanted to give me this first. I also told her I think a lot of the pain is muscular at the moment, the nerve pain is starting yes, but she would only prescribe the nerve inhibitors. I have swelling of the pads at the base of my spine so there is inflammation but she didn't examine me, ask me to lean back/forwards, nothing. New, young doctor doing her GP training. I think I will make an appointment with the senior doctor who knows me well, but you know what it's like trying to make appointments at GP surgeries. Either stand by app with whoever is available or weeks to book in with the one you want.

downton yes naproxen is generally on prescription only and you can also get a scrip for the stomach protector at the same time. I think the Dr would not mind you trying it as it is not addictive like the opiate drugs so they are probably happier to give it out. I found it takes a couple of days to work, it builds up in the system.

Oh, that MRI experience sounds horrible, downton! With mine they gave me a support to rest my legs on so it was quite comfortable. And I sedated myself (diazepam from GP) as I was worried it would be claustrophobic, but it wasn't. I think being suitably relaxed / out of it did help with the lying still bit!

Re. NSAIDs, you can get diclofenac 25mg. over the counter, but they'll only give you about 3 days supply so it's definitely worth asking the GP for anti-inflammatories. Naproxen has a better safely profile overall, apparently, but I find diclofenac works best for me.

X post there with you, but I see you said you have some swelling so def worth a try for the naproxen. I think its best to go straight back and ask for more pain relief. If you don't go and soldier on they will think you are fine, but if you fuss they may give you something to shut you up help.

Totally agree about having to make a fuss. I learnt that last time. If you don't ask/tell them what you want, you don't get. I learned so much on here, I think I'm more informed than some doctors.

Health care is so hit and miss, isn't it. A good doctor is worth their weight in gold. Unfortunately I was under one of the best neuros in the country when I was in London, but moving back to Yorkshire and having to cancel surgery down there, then recovering, I've lost that chance. The surgical team up here is at a private hospital in Sheffield, quite a distance from where I live.

What a crap day. Worst in ages.

frozencherries, is that you?!

Counselling another session of me going round in circles, revisiting stuff I'm supposed to have 'put to bed' but obviously haven't. I really like her, though. No clever, clever stuff and she does even give me advice sometimes.

Hope you've all had an okish day.

downton if hospital records etc are missing it's worth asking for copies of all letters sent to gps because they should give a summary of diagnoses, plans and treatments. Your GP records are probably digitalised and should have moved with you. The whole point of the disastrous farce of computerising the nhs records was to make the patient notes 'portable'. Also you can request copies of any MRIs on disc via the hospital records system. If you are having a relapse I strongly urge you to take time out and rest, potter, rest. I really believe that if you catch it early it can make all the difference.

downton just rereading your post! I'm totally baffled as to why your GP gave you gabapentin as a starting analgesic. As you say, the back pain is likely to be muscular. Very strange. Ok, you might go on to need the gabapentin but surely naproxen plus codeine etc would be better. Note though you don't care for codeine.

And heat. Did I mention heat?

I am sporting a very sexy wrap around heat belt. Even better than a heat patch! My DH will be loving my new under attire. Glamorous? Moi? Not so much.

Fucking ipad exclamation marks. It inserts them randomly. Please excuse the jocularity it implies.