The Back Story Continues

[Matildathecat]

This is the support thread for all sufferers of back pain. Everyone most welcome to join.

Here's our first thread

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

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.

Please post and include your story if you'd like to. No niggles too small, this is strictly non competitive!

Hello everyone

Thought I would say hello as after a couple of months relatively pain free, I've had to dig my tens machine out today -sob

Why are backs so bloody fickle?

to 17.

yes, I had weight loss with amitryptiline. It completely zapped my apetite. I actually would forget to eat as I had no hunger pangs. the weight dropped off me. I do think that pain had a lot to do with it, but more so the meds. I think it can also cause weight gain. Unsure if it's water retention? or due to lack of movement etc, but I certainly didn't put on weight despite doing not much moving. However, I am putting on a bit of weight on this Nortriptyline - I think it's got a lot to do with a sudden increase in sweet hunger pangs, in particular haribos or other jelly sweets!

I have spoken to GP. codiene is not really cutting the mustard, and the up and downs are seesawing. I find codiene works for me best when it's used on an as and when basis rather than permanently, and I am having to use it every day now up to 60mg, it's just not possible to function well but I was able to work on tramadol. Previously I was on 100mg x 2 SR tramadol daily, but I have asked to go onto 50mg SR x 2 to start with, see if I can keep pain at bay with low dose. Doc was happy with that, he said he was going to suggest tramadol as next step again and said I can top up with codeine as and when I need to. if I regularly need to do that, he will up the dose. He said it's fine to take with Nortriptyline. I didn't ask to change that dose yet, will see how this goes.

I spoke to the neuro consultant's secretary, she called me back following a tearful call yesterday. She said the consultant has done a dictation and she will be writing it up on monday and will call me on Monday with the details but he is going to be offering me another outpatients appt, not dicharging me yet. However she also said she thinks he has not seen anything 'out of the norm' on the MRI. Which has left me feeling quite down. I so know that I was in pain but nothing like this now, and it's been like 10 weeks. I know how i feel, and this is not just back pain. I probably agree it's not a prolapse as this feels different from before surgery, some of it is the same, but largely the pain is more uniform, but it's definitely in my back, and down my legs, it goes from my back down my legs and I feel so frustrated that there is 'nothing to see'. DH said that is not what was said, and clearly he wants to talk about it as he had said originally if he could do nothing/didn't see anything he would discharge me/write to my GP so wait and see what he says. But, I just know I am going to be fobbed off as nothing to see/be able to do. Then what? I think I need x-ray as it's popping/going regularly, with little movements and he needs to check out the movement of the vertebral misalignment. Or an MRi with contrast to see what the nerves are doing, or an x-eay with contrast? Can they do that? Something. FFS. But, I am going to talk to GP about the RA possibility as I finally got around to looking into symptoms in detail, and a lot of it matches things I feel. I don't want to be sick. I don't want a horrible diagnosis, but I want something to show that this pain is fucking real.

It like going around in fucking circles, while banging my head against a brick wall.

Sorry for the moan. I didn't do well with my Positive Posting did I? I hate being a fucking moaner. Even DH told me to shut up about it today.

I so know that I was in pain but nothing like this now, and it's been like 10 weeks that should be, at the time of the MRI I was in pain but nothing like this now, and the MRI was 10 weeks ago or more.

Pavlov -seeing nothing out of the norm doesn't mean there's nothing to see, it may be the secretary's way of saying nothing sinister but it might still show disc issues, wear and tear etc

Has it really taken 10 weeks to get the result of your MRI though?

Pavlov you moan away. 10 weeks is disgusting for giving you your results, esp if there is something that might help. But even if not you could easily be informed by a quick letter and at least you would know. It wasn't very nice of your dh to tell you not to moan, as we haven't got the pain transfer device online yet maybe you could accidentally knock his bad knee then tell him not to moan it was just a small knock

We went to the wildfowl centre today with my mum. She also has a bad back and we hobbled round together. Dd was happy as she got spoiled in the gift shop.

Hi 17 have a brew.

Pavlov I started reading your post in a yay type way - meds sorted, letter dictated, appointment forthcoming, but then it all went pear shaped. It's so shit to actually want there to be something to see isn't it? And more so to be disappointed incase there isn't, but 17 and your DH are right, there are many ways to interpret what his secretary said and what they class as "normal" so try not to be too fed up just yet. It may be that they have a plan worked out for you, but if not maybe if you are armed with what you would like doing x ray and test wise and the suggestion they look for RA you might get somewhere when you are eventually seen.

Maizie I have to go back after a month on iron so will ask about possibly taking a supplement then and mention the numbness. We can't really win with these pills can we? And trying to find out if something is a side effect is about as much use as window wipers on a submarine! "Some people reported weight gain, some reported weightloss." and "may cause drowsiness, may cause insomnia" are listed on all the leaflets for the meds I take. Do you think you feel hungrier? It's really hard to tell isn't it?

Happy Friday!

Can't have a brew unfortunately -caffeine has a terrible effect on me and I can't stand caffeine free yuck

But I'll have a juice with you

Live it sounds like you had a nice day, it's always good to have a fellow wobbler to keep pace with.

Pavlov I meant to say what you described reminded me of my sister. Her HR dept sent her for a scan after she had a few instances of days off. She was really hoping there was nothing more serious on her scan, but conversely hoping there was something on it to report to HR. It's damned if you do and damned if you don't isn't it? She has DDD so there was something to look at but nothing to do, her HR dept were great though and arranged for a new chair, special laptop bag as she travels a lot etc.
I hope you don't accidentally walk into DH's leg at any point tonight

Hi to 7 sorry to have to meet you here but welcome.

pav no words of comfort really. I've been there and it's crap. I think changing and accepting the meds is probably necessary. If it's any comfort my GP agreed to the sr tramadol, too but she suggested starting on 150mgs! I might ask for a downgrade cos although it's quite good I do talk rubbish and fall asleep a lot. I'm not going to knock your DH. Frankly it is boring / frustrating to keep hearing the same stuff. I know he's pretty good about it, same as my DH just can't deal with actually conversing about it iykwim? Tell us, we won't tell you to shut up. Hope you have a restful weekend. For what it's worth I wasn't able to work at all when in a similar situation so I'm in awe.

Happy weekends to you all. Very steady, please.

Forgot to say hi to 17 is the tens machine helping.

Mum said my Granny didn't like the sound of the flexiseq, my dgm is 90 and not that keen on new ideas. Funnily she went on an anti arthritis diet years ago when that was quite a new thing. She does say this helps her. But nowadays she is more cautious.

matilda ok maybe it was a bit unfair to suggest Pavlov should whack her dh in the knee. He does sound like a good chap, maybe just a light tap? No? You're so sensible darn it

It does a bit live but I've just taken some tramadol and I've retreated to bed

Have been VERY emotional today. Saw cancer charity lady who asked me to go through everything, tutored for an hour (loved it as forgot myself and was normal again), went to doc, CT scan, pharmacy & doc screwed up drugs, etc.
so did consider cutting all my hair off with scissors as I trimmed the visible split ends. And I did consider downing the lot when I sorted my Week's dosage pill holder thjngs out. And I did splash that across my private Facebook group.
Calm has resumed.
Friends think I'm bonkers. Officially.
But I feel better. Lol

ok. I won't kick him. just threaten. To be fair, I would probably not got as far as this afternoon if the other way round, so don't blame him. Unfortunately for him, tramadol makes me talk almost non-stop. I can feel it already, so I am not going to shut up any time soon he is not enjoying the Ben Fogal thingy that's on now

17 yep, 10 weeks. or whatever it is from 3rd/4th December 2013. All sorts are happening since. Looking back, that period was low pain compared to now, wish I had that level back! I refuse to be fobbed off with nothing though. having been given a little bit of a lifeline with my job recently, I cannot afford to mess that up, I need to get back on track.

DH has said we can do Beautiful Days!!! His main fear of it is that we won't be able to get me comfy enough, and that is going to struggle taking everything we need. So, he has said we can go if we stay in a yurt nearby!!! I can do that! The only rub with that is that there is no in/out after 9pm, but he thinks that with two children that is probably about right. It means we might miss the main acts, but as long as that is not FT, that'll be ok, I mostly want the festi atmosphere and share it with the children, as BD is fab family festi. If he plays, I will just have to stay, and the break out after it finishes! He did 2012 but not 2013, don't know if he is going to do this year, line up not announced yet. He is reluctantly thinking that US might not be a good idea, but not ruled out yet.

matilda 150mg tramadol! as one dose?! wow that's hardcore! I did top up my tramadol to it's max 400mg for a while, but that was when my pain levels were like 8/10 constantly before surgery. At least I am not there now. Need to remind myself of that.

cowmop what I would actually like is for someone professional to say you have XYZ wrong with you, we can give you ABC and in a few months you will be back to normal. Like it's a bacterial infection that will go away. I know that won't happen, but the not really having any diagnosis is driving me crazy. People say 'what is wrong with your back' and I say 'well, I don't really know anymore...' argh!

goodness sorry, x-posts. So sorry your meds have been messed up again. You are not mad, and that's the problem with people Not Understanding. They don't get how all this shit can impact on your emotions. It's not 'you had a bit of a scare, had some surgery now recovering well from physical wound' the psychological shit that you have, and continue to experience is profound. Glad you had some normality with your tutoring for a little bit of time.

Do you reckon I could have a glass of wine on top of my lovely new cocktail of drugs? (tramadol SR 50mg, Nortriptyline 10mg, paracetamol 1000mg, naproxen 250mg) just one glass, DH forgot about meds and got a nice bottle of pinot noir. He has beer so won't drink any tonight, so seems a waste to only drink one glass, but, not sure I should even do that, but am quite tempted!

Pavlov, ;(
The down the legs stuff is nerve pain isn't it?
Don't know whether this is relevant or helpful but i was on morphene (through drip with a button to push for more) and though I didn't feel a thing where the tumour had been excised, my hip pain (later diagnosed as nerve pain) was terrible. I had to b turned every thirty minutes through the day n night. Anyway, thing is, once an anaesthetist happened to pop in and said he thought it could possibly b chronic nerve pain, he took me straight off the morphene drip etc and put me on the OxyNorm, oxycodone, ami, gabapentin etc. within two days it was ... gone!!!

Any chance it could help if they changed their treatment of it as nerve pain. I've prob completely misread / interpreted your post. On which case, ignore my sf centred advice/ experience.
10 weeks is shit. I had 6 waiting for things and was in hell worrying n waiting.
Big hugs.

Hi 17! Hot choccy?

Hot choccy always goes down well

Don't think I'll get any sleep anytime soon so might as well

Sorry for not having read while thread but would u mind repeating why u don't sleep. R u in hospital or in too much pain?

goodness the nortriptyline, which is similar to amitryptiline is for nerve pain, yes you are right, the leg pain is nerve pain. Before I had my discectomy, my leg pain, left leg in particular was horrendous, I could barely move my leg, and it was pins/needles/numb at the same time all down my leg. I remember when i woke from surgery, on morphine, I said 'yey! i can't feel any pain in my leg any more, it feels normal! that's because of the morphine though isn't it?' the nurse said 'no my love, morphine doesn't touch nerve pain, it's because it was successful' which concurs with your experience of having nerve pain while on morphine. Doc would probably increase my nerve meds, if I ask him to, but I don't want that, as I am managing the side effects of being more ditzy than normal, just, but any more and I don't think I will cope as well. I had that with Amitrypiline, it was fabulous as nerve pain killer, but the side effects were horrible for me personally (not for everyone).

Could that explain why I'm a bull in a china shop wherever I go at the moment, not able to finish sentences, etc?
It's a catch 22 for u isn't it. I'm sure you've already tried every scenario. I find pain at night that keeps me awake to be intolerable. But day rule it seems to be more tolerable. Maybe heavier stuff at night? In sure u do/ have done that already. I'm a novice. You're the pro.

That's ok goodness, I've not actually explained my back problem -very rude of me

I have a bulging disk which causes sciatica from my hip all the way to my ankle

I also have MS which affects my gait, putting pressure on my lower back and reducing my core muscle tone -neither of which helps my back

It's also difficult to know what's my back and what's the MS

I have remitting/relapsing MS and I've been pretty well recently but my back has been niggly for a couple of days and has hit me like a sledge hammer today and it usually takes a few days of painkillers and tens to bring it back to a manageable level so sleep will be interesting tonight

Sorry for the essay

17 have you read some of our my posts? That was not an essay love! There are some others here with other conditions whose symptoms overlap with the back pain, so you won't be alone there, with that difficulty of knowing where one pain ends and another starts.

What treatment do you have for the back trouble/sciatica? You said tramadol earlier, anything else?

goodness I know far more about most drugs that I would like to! In my professional capacity I work with drug users and so I know all about legal and illegal drugs My clients know I have a bad back (can't be avoided as it's so bloody obvious!) and are always trying to get me to spill the beans about my own medicine regime! I tell them I rely on paracetamol alone. Their reply is 'bollox do you!'. That's another reason why I don't like to go to work under the influence of too strong medication, as some of clients would know for sure!

goodness meant to say, when I was taking amitryptiline I had real real trouble finishing sentences. It was one of the things that drove me mad. I knew the words but could never think of them. I would point to objects, would try to explain them, but could never grasp the word from my brain, or I would be halfway through a sentence and I would completely forget what I was talking about/what I had just been saying, it was very embarrassing. I wonder if that is what you are experiencing now? I get it a little now, on this new drug, enough to look like I am an airhead, but mostly enough to brush over with a laugh. I did have to have a chat with DH to remind him that when I can't remember words, or forget what I am doing, I am not trying to be obstructive, and he is more understanding for the most part.