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.

big (((((((((()))))))))) to you cherries, feeling beaten down too and weary- can't imagine what it's lik e to do this for years, although mine have been sometimes going on since pg with ds there were long periods of ok-ness so i only felt it was defined as a problem last sept- and that feels long enough, sometimes you have to feel the down to get through, can't always push things to one side. I'm with on the hoping tomorrow is better, how are you sleeping at the mo? still waking early or not so much?

maizie, apologies for the disabled reference. Just that you have had support for your ahem, difficulties . Your Dr Baron Cohen was just on Horizon on bbc2, did you see him? Fascinating subject.

Big hugs to all in pain. I'm pretending that I'm pain free!

Ps met Martin Clunes with his dog in the park this evening. Like doggy people.x

Nighty night. Feel better for sharing. grin

yes- I watched it after I had posted and thought eh that's weird. No apologies needed, i wasnt offended, just didnt think of myself as needing/deserving the extra help associated. I have a friend with MS, and a mum with far greater issues and much more/worse pain who I guess I see as in a very distinct category from myself with mostly low level pain and no lack of movement or loss of range of movement.
I saw Mr Clunes in Camberwell once
tv prog was very intersting although mde me feel a bit sad still, i know she didnt mean too.
glad you feel better for sharing cherries night all zzzz

For instance when i make contact with the disability office at uni they will probably tell me I can have extra time in exams but I would not feel right accepting that. I guess many people with diff situations each time and encompassing all d's together when clearly they will vary (eg. hugely diff impact by say mental or physical d's) - so some other people may feel like me and not take evrything offered. this keeps reminding me i need to finish my essay, darnit, not tonight, off to tea and zzzz

I remember tell of you maybe coming to London town in future for a meetup cherries, do you think you would- tis lovesome in Summer after all which is nearly upon us- would i have to get an orange bag to come along?

maizie I know exactly what you mean about turning a corner of 'normality'. I am so sorry you had a shit day, but you are clearly a strong determined woman and I hope you keep that fighting spirit. And, it's absolutely ok to take the help offered to you at uni you know, it's not a sign of weakness. I had this conversation with one of my clients the other day who has taken a negative turn as she didn't want to ask for help, wanted to show she can do it on her own. She can't. I reminded her that it is a sign of courage to seek the support around us, we are social creatures at heart, we are meant to rely on others to help us through our lives, sometimes we depend on people more than at other times. Once upon a time our support would have been in the form of lots and lots of relatives, nowadays it's wider than that (for some, instead of, for others as well as). We cannot live our lives without having a helping hand sometimes.

frozen I also understand how you feel about not wanting to take the meds, wanting to get back to how you used to be. I am notorious for refusing to take my meds. Even this morning I lay in bed almost crying with pain, meds in the drawer next to me and I kept thinking 'wait until a bit later, eek it out a bit' and then I thought 'why? why am i doing that? I bloody need them!' and so i took them, but I felt guilty. I don't know why I feel guilty, as I I swallowed them, I felt guilty.

Shame I am not so good at listening to my own advice

matilda get you with your rubbing shoulders with celebs

maybe we should all visit london in the summer. We could host a back pain day, with real life cake and show off our boots and bags! we can talk casually about tramadol and other drugs that will make the staff around us go

Interview day -eek!

Not sure I'm doing the right thing but I'm going ahead with it

Carry on regardless and all that

Good luck 17 hope it goes well.

Started to sleep better just before starting to take Robaxin. Now taken amatriptyline too and am wiped out. Pissed off and upset.

17 good luck! Let us know how it went. Hope you aren't in too much pain during the interview or have to resort to the wonky hand bum sit. Seriously. Good luck.

frozen, sorry you felt so low last night. Hope you got some sleep and have woken to sunshine. Now you have decided to take the meds can you focus on doing some nice stuff as a result of the (hopefully) lessened pain? Quid pro quo? I think both are probably the kind that take time to build up and work so maybe try to stop thinking about them and beating yourself up quite as often? actually not trying to annoy you but you sound so miserable. Go have some fun. Order.

pavlov as ever! crap for you. I'd say do whatever it takes until your pain clinic then give it to them. Sob, wail, get snotty. hope your day is slightly better.

I'm meant to be going to Wisley today (lovely gardens place) but friends husband not well so hoping he makes a speedy recovery for my own selfish reasons!

. Have a nice day.

Cross posted frozen. Get yourself out, hon. Hopefully the amytriptiline hangover won't last long.xx here's a hug. ((((())))))

I'm more worried about the afternoon energy slump

You've got to love ami!

Hopefully it's mainly sitting

Lol
Gonna sleep now. Finished teaching (I know - bizarre. Taught 8.15-9.15am). Had to wake up for it from deeeep comatose state but her
Led in that 'the deal' was that the mum would take my son to his camp on collecting her daughter. I couldn't have driven this morning. Now in bed with my friend Physio Machine and my customary bowl of frozen cherries & hot chocolate. Not using machine - just looking at it out of corner of my eye, while wants to sleep but distractedly looking for Horizon on I Player.

Can I pick people's brains about what the most effective drug combi they have taken are?

I have reached the conclusion that diclofenac potassium doesn't do anything for me.

Diazepam is good but I am aware that my Dr is going to prob refuse to keep prescribing that so what else can I have?

I am mobile. I can walk, I can reach up, I can sleep but I struggle to bend and have a constant bruised, sore pain that I can't seem to get relief from.

(am awaiting MRI scan date)

nancy my best painkiller combination for the level of pain you are in was probably:

100mg SR tramadol x 2 daily
1000mg paracetamol x 4 daily
250mg napraxen x 3 daily
plus
50mg tramadol normal release as required to manage additional pain spikes (up to 400mg in total tramadol max dose inc the R dose)
2-4mg diazepam as required (x 3 daily for max 2 days) to manage specific spasms that I would still get.

I was on this before surgery and did not mess with it At All and it kept me stable and able to manage myself enough to get to surgery.

I can't remember if you have any leg pain? If so, then probably my favourite med for pain relief was 20mg amytriptiline as that killed the nerve pain completely. I could not manage the side effects but lots of people are fine with that. When I did take it, I took it alongside the above meds.

If the diclofenac is not working, ask to try the napraxen. I swapped over to diclofenac as my GP changed the drug because he said of change in prescribing as a result of risk of heart problems long term, but that risk is the same for both drugs (in older patients) and it is more likely he got a visit from a medical rep

Thanks Pavlov that's really helpful. No, I don't get leg pain so do realise I am luckier than most although pain now moving into shoulder which is a whole new thing....whoopee !

Can I ask pls:

I am on naproxen, lyrica, amitriptalyne nd co codamol 30/500 for back pain / leg and foot pain.

I am dentist phobic and have to have root canal tx.
Dentist told me to ask gp for 'a sedative' as she has had to stop work on me in the past re hysteria.
GP very reluctantly prescribed 2mg diazepam, take one, if no effect take another. Took them as prescribed, so total of 4mg. No effect. Dentist had to halt work.

Does anyone know what I can ask for from GP?
I have another 1 hour at dentist on Friday and am dreading it?
thank you.

Saw my GP. I cried. Lots. He was lovely. I gave him my list. His thoughts are:
(i wrote an epic post but it's too long and you will all switch off so I have summarised, which is still not short!)

I need my inflammatory markers (or whatever they are called) checked as he did not do this with last blood test. I am having that tomorrow.

Could be something inflammatory and he will explore this depending on outcomes of blood test

Could be medication related as I have a lot of meds built up in my system, and already shown I am quite sensitive to meds.

Could be my body reacting to what he thinks is me 'coping too well'. He has said he thinks I am have always coped amazingly well with my back condition and that perhaps my body is responding. He said that any one else he has seen in this position would have stopped work by now and would have to some extent 'given up' which is not necessarily a bad thing although he knows this is not what I want to do so not suggesting that I do this yet but carrying on as normal may be taking it's toll.

However, he thinks the mostly like cause of at least the back, leg, hip pain is still mechanical in nature. The way I walk, move, stand, bend, sit, all continues to point to a very specific location of pain. He is certain that I need fusion. He has said this before, and still holds this opinion. He thinks the neurosurgeon is probably going to recommend fusion, would be very surprised if he doesn't. He doesn't really understand why it was not fused to start with given the issues with the disc and vertebra, he thinks the whole area is probably very unstable now and that is why there is so much pain and why hardly anything at all is increasing the pain, and the only solution to this is fusion.

He has said I need to tell the neuro to be completely honest with me about the options and that I need to be realistic about the fact that fusion may be the best outcome now.

He doesn't think that the other symptoms can be fully addressed, whatever their cause until/unless the mechanical issues are resolved, and that I may well see an improvement in my entire health situation once this is done (he is quite convinced they are linked). But that doesn't mean he won't explore other causes in the meantime.

He has given me a new drug to try as tramadol is making me wired. Co-drydamol. I have not had it before but I know some people here have? He said it is not weaker than tramadol, nor stronger, but is hopefully less strong in terms of keeping me awake, and he thinks it may worker better than tramadol/codiene for pain relief. Next step is morphine based meds I said I am not ready for those yet and he agreed 'not yet'. (i don't like the 'not yet' bit as he seems to think this is going to get worse).

He told me to come back any time I needed to cry and complain about how shit it was and he was sorry I had not had the success I had hoped from surgery.

nancy there is nothing lucky about any back pain.

first can you ask your dentist to refer you to maxillo-fascial unit at the hospital and have the work completed under sedation? Not necessarily full anaesthetic but you can be more sedated that 4mg diazepam will give you. I know some people who have had their wisdom teeth out and other evasive dental work done in the hospital due to dental phobia.

My understanding is that for diazepam to be effective as a sedative it needs to be given as 5mg-10mg tablets and if your GP won't prescribe that, then they can do it at the hospital.

Pavlov what does 'fusion' mean - I take it that's a surgical procedure?

Your GP sounds good though which can often be half the battle.

pavlov, what a gem of a GP. None of mine have ever voiced an opinion about my back troubles. Do you have an appt with the neuro? In the meantime still push for the injections because your current situation is intolerable. You have indeed battled on, maybe to your detriment in some respects but in other ways it has kept you going. We used codydramol routinely for post cs ladies. It's paracetamol and dihydracodeine. It will be interesting to see how it works. Tramadol is a weird drug. On the sr I keep getting waves of stoned feelings like it's suddenly let out a bit too much. So today it's cocodamol for me.

nancy

Naproxen 500mgs bd
Omeprazole 20mgs od
Gabapentin 600mgs tads
Cocodamol up to 60mgs ads (actually couldn't tolerate that much)
Amytriptiline 20mg night.
Tramadol up to 400mgs per day (again couldn't tolerate that much)
Diazepam 4mgs prn (not really needed much)

My gps gave me a lot of autonomy probably because I really understood all the meds and how they work together. I must add that these weren't all started together and I suffered from some terrible side effects most of which I e overcome. It's all very much depends on the individual. However, combining these groups is pretty standard. Some people have really benefitted from injections, tens and accupuncture, too.