Back Again! Back Pain Support Thread

[PavlovtheCat]

Only right I start the new one seeing as I was responsible for the last one ending so abruptly !

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

That's interesting. I will be honest and say a senior person has warned me off. But I guess they help some people.

Do keep is posted. Sounds like we have quite a few similarities . Tunbridge Wells is lovely, though. Do you know Frant?

And I guess it depends on how one measures success. I didn't like TENs despite promoting it in midwifery. It just annoyed me. From what I hear it's a similar sensation. Happy to be corrected, though.

And frankly can't stand the idea of more surgery in my spine.

tough I remember you holding my hand in those first threads. You and some of the other back pain sufferers. And, unfortunately, I do remember your experiences and the words of wisdom and preparation for the potentials in the future. And try as I might to use those experiences of others to avoid being her, I am alas here I was, and continue to be amazed at how much help you and the others gave me, and I absolutely would not have made the recovery I have so far without it, I would never have got as far as neurosurgery, as forcing the MRI got my GP to believe that yes it was really my disc and his attitude changed completely. And, mostly, the handholding when I could bear the pain no more. I am sorry you are still on this horrible fucking roller coaster.

I have MRI tomorrow morning, cancellation. Pain levels are higher than normal but hugely in spine and uniform into the leg which I think is probably more transferred pain so not sure they will see what I want them to see.

My DH had an interesting conversation about my second opinion with an old family friend who used to work quite high up in healthcare (not doctor, engineering or something) but knows the system well from the inside and has 'rubbed shoulders' with colleagues who were doctors etc while doing gold, as well as navigating it when is wife was sick (terminal cancer). He has said that I need to get my second opinion outside of South West. He said that I need to find THE BEST surgeon, but not if it's in Exeter as there is a good chance that my surgeon and the surgeon who is looking at my file while play golf together, or socialise on some level and talk. If they are colleagues then the second opinion surgeon may be hugely reluctant to overrule my surgeon's decision, regardless of his view on fusion. It's an interesting perspective and I see where he is coming from. I think it has been proven already that HCP are not impartial when it comes to these types of decisions.

matilda (and others) re tramadol addiction. My GP insisted it's not addictive, and on one level he is right. It's not addictive in that it can quickly have you needing more and more (like say diazepam if you take it too long, you need more for the same effects). The problem in terms of addiction is more about when you stop using it, you will get withdrawal. GP said this doesn't happen, he lied. It's to do with the half life of the drug and it leaving your system and it does affect you. I found that I needed to reduce it to the bare minimum first, from 100mg SR x 2 daily (and top ups of up to 400mg per day) to 50mg (that's when I cut a SR in half, trying to titrate down. Don't do that if it's a tablet! But fine if its a capsule as the beads are SR individually). And then I missed a day here and there, before going 2 days then taking one, 3 days then taking one, then just getting on with it, but taking maximum paracetamol, naproxen and plenty of water. I kept as busy as I could and swam lots. I experienced fluy symptoms in my arms/legs (but realise now that might have been what I was feeling that it was hiding as a painkiller) and very restless. It took about a week when I came off it and not as bad as when I had tried before (several times), during which time I felt so bad I started using it again. Actually, probably should not have come off it at all. Some people struggle longer, and some people have NO problems coming off it. But, the addiction is more about half life withdrawal that physical and mental addiction. But, actually, you should not be thinking of coming off it at the moment as you need this. You will be surprised at how quickly your pain levels increase if you don't take it. I didn't take it this morning until I got into work as got sidelined by children, and I was in so much pain, didn't realise 50mg did so much for pain relief (as well as paracetamol and napraxen).

I agree with matilda re making sure you mix your meds properly (sorry can't remember who posted about their meds, and can't scroll without it taking an age. I normally have a pad to remind of things like this, but don't atm) rather than just increase the dose. It's such an easy thing to do, but the combination of meds is just as important. You can get syrups for nortryptline and amytriptiline etc starting at as low as 1mg, so you can titrate upwards really slowly if you struggle with the side effects. I will talk to my own GP about this seeing as the pain clinic guy has just made up a million bullshit reasons for not giving me the injection. I will get it, just have to jump through some more hoops and meet the consultant personally and have a chat. pain clinic guy said the consultant (who does the injection) can explain the risks and reasons for it not being recommended after a year of nerve pain (after I refused to drop it) and I said I will explain to him why he should do it But other than that appointment, the pain clinic won't be seeing me again for a while. waste of my time.

matilda and tough is that stimulator the one that is surgically put in? If so, my pain clinic guy talked to me about this before christmas, but he can't remember what the fuck he said this time around, he whittered on about him probably thinking that at that appt in November/December, the injections would help my left leg pain but I didn't have left leg pain then, it was both legs, mostly my right, it was left when he first saw me, which shows he only scanned my notes quickly. But, at the time he mentioned it, he said it was an option if surgery was no longer an option. Funny how he no longer things anything will work other than a pain management course (don't think the irony of me being a cognitive behavioural trainer is lost on me there).

I have heard no reports about how successful that is, if it's the same thing.

Going to see my gp today. Just want to get on top of my pain. Am having to take double what they say for oramprph not that it's much anyway but the effects just don't last for very long. Will ask about the patches but won't hold my breath. My doctors just couldn't care less about me

Pavlov - fingers cross the MRI shows what's going on and find that second opinion best surgeon.

I think I was lucky coming off Tramadol but partly that's because I was still taking codeine so not withdrawing from the opiates, just the SSRI and SNRI effects - I didn't even know they had this when offered it, I had asked for a slow release codeine and they only had Tramadol SR. I came off citalopram a while back and it was very similar. Better than the awful side effects of taking them at least.

I was dreading being offered a CBT course for pain, I'm just about to finish a CBT course for depression and it hasn't helped. I was warned it probably wouldn't suit me - I already know why I feel shit so spending 12 weeks exploring that has probably made me even worse. I was surprised at the lack of emphasis on how to be normal rather than just questioning the depression all the time. I have a review today and suspect I may be offered a social anxiety course and marriage counselling from what he's said before. Depressingly a lot of discussion centred around how bloody awful the world is and horribly people are treated at work etc. All not helped by being permanently in a terrible mood due to pain and immobility which is invisible.

I better get out and pick up this prescription for the 10mcg patches. I've left the old one on an extra day and extra top up of cocodamol. It's kept the more extreme pain away but do need the top up for the bad times, even if the GP isn't happy - it seems to be normal to have something for what I assume is call breakthrough pain. Also need to shop and get ready for DD1's birthday.

Msdj - good luck with getting patches.

Just reading my report now. Anyone have a clue what this means:

"At the lumbosacral transition there is a segmentation disorder. The most caudal axial slice is assumed to have been performed at S1. Correlation with plain films is advised should surgery be contemplated.'

Wot? !!!

I'd be guessing but it does say something about surgery and doing plain films - x rays? So I'd push for referral to a surgeon.

I've got to say that it makes you realise how limited GPs are, understandably they can't know everything, but these issues really do seem beyond their knowledge, which is why your GP doesn't know what to do next. And that's why you need to go to someone more specialist to advise on the next steps and potentially for better pain relief too.

Managed to get out to the dr to pick up the prescription, got the prescription - lovely pharamcy let me have it without my pre payment which DH had, also got them to advise on my swollen foot after a suspected insect bit, hoping it's not developing into cellulitis as the google images are shocking! And off to Peppa Pig World on Monday. Also did a supermarket shop and that was too much. Pain relief non existent and didn't take any cocodamol. Got home and removed the 5mcg patch - the edges were covered in black spots - mould? 10mcg now placed just below my waist band on my bum followed by a couple of cocodamols. It hurts :( But it's Friday so as suggested I may try the hospital again to find out if I have an appointment yet.

yikes, really.

Seems crazy that GP is so clueless what to do now. Will ask for a referral. Also seeing osteo in next couple of hours who is so much more knowledgeable. Hopefully he'll shed some light

Doctor wouldn't give me patches as I wasn't being sick from the oramprph. Instead has given me Naproxen, which I told him has never worked before! Gabepentin and Omepraxole. So back up to 40 tablets a day and oramprph as and when needed for the next 6 months until I can have another spinal injection. Oh joy!

msdj did the doctor explain a bout starting the gabapentin very slowly? It might make you feel quite spacey and dizzy at the start. You take one capsule the first day, then two and move onto three times a day. The dose can go quite high eventually. I'm on 600mgs. Three times a day and could go higher. It is good for the nerve pain, so give it a go, it might let you slow up on the oromorph in time. Does all take time, though, I'm afraid.

nancy good luck with the osteo. Does indeed sound like an X-ray and referral to surgeon are required. Might have been nice if your GP thought of this. Why have an expensive investigation, get told there are Bnormalities and the do.....nothing?

Yes Matilda I have to start slowly on them. Then go back when I am up to 300mg 3 times a day. He will transfer me on to a single tablet then. So that will cut the amount I take down a little. Just getting me down now. Been in constant varying forms of pain for 15 months. Lost my job because of it. I just keep trying to think that there are a lot of people worse off than me around

nancy found this about lumbar dysfunction disorder which is something to do with it? I suspect it could apply to all of us, certainly does for me, but then I have self diagnosed a million different back problems for me so far

tough thanks for asking! MRI done, only 20 mins late, but despite it being at 8:30am, still didn't get to work til gone 10:30am as I had to take car, come back and take DD to school (late) as DS was/is sick and been puking, fever etc so DH could not drop me off as planned then wait in the hospital after school run with DS (not good to be spreading a stomach bug around a hospital ). 3-6 week wait for the results to get the surgeon. So, that'll explain why it took like 4 months to get a reply from him giving christmas and him being on lengthy holidays etc. So, I don't expect him to reply before another month from that at least. But, it does mean GP can do the referral soon for second opinion.

I got the pain clinic appt to see the pain consultant not the physio lead I had seen last time. This is so 'he can explain what the risks are with injections and why it's not appropriate for you' and an opportunity for me to tell them to do what they said they would. Not til mid June, almost 1 year to the day since I had surgery. They have fucking dragged this out so long it is probably now inevitable it wont' work. if they just gave me the injections when they first said they would (before surgery) they would know if it works and I could have it managed now.

nancy I agree you need to be referred to surgeon to discuss this, or the spinal pathway team at the hospital - they have different names depending on the area, lumbar spine team, spinal care team, spinal pathways, it's basically a team who assess what's going on and which direction to send you i.e. physio, neuro or orthopaedic route, pain clinic etc based on what's wrong. Your GP should refer you there if not to the surgeon direct.

queen hope the pain patch kicks in quickly for you. mrsd sorry you are not getting anywhere with your GP. it's so hit and miss isn't it? Some GPs are good, some are not. mine didn't used to be, until the disc prolapse was confirmed, then I think he felt bad that he didn't go with that diagnosis (he said I didn't 'fit the profile' so it was very unlikely my disc although admitted the symptoms suggested otherwise) and since then he has been my advocate. I expect he would happily give me the patches if I ask. But, not yet.

I am Rolling With Resistance. This is a technique used at work to deal with offenders who deliberately obstruct and put barriers up to change. Sometimes, you have to accept their stance, accept they won't change and work with what you have available, for a while, with the hope that in time, they will come around to making changes. I am using this technique to put aside the current fuckups, miscommunications between departments and refusals to work beyond budgetary and policy constraints for the time being. I am going to accept my current situation with some zen like calmness, and go with it, accept my health condition for what it is right now, I am going to stop trying to fix it, for now, stop trying to find solutions and learn what is going wrong. I am going to accept that I have pain, that this is not going away, and that I can't change that, and just allow this to be part of who I am for now. I am going let it be with me for now and not fight against it. That means taking my crutch, taking my meds, and not getting fed up when I can't achieve everything I would like.

Positivity eh?! I am sure it won't last, but I can't fight this, the hcp, the pain, the longevity of this any more, i need a break.

I have bought some Fly Wedges. They are secondhand from Ebay, I am not precious about stuff like that, I know some people don't do second hand shoes but these are in fab condition, perfect condition in fact, and I will get new inners for them, as I need them a big more comfy. I love these shoes and can't get them new. I will find a linky. I also went into town yesterday for some clothes. I could only manage an hour and that was buying some clothes without trying on, and only going to Marks and Spencer and Debenhams due to it all hurting too much, and I bought mostly black, But, needed some new chinos and black tops for work, and some new wonderwoman pants and a bra. Amazing what new clothes can do, even if not fancy stuff, just new.

But my shoes are fab. I love love love them.

I have just come across this thread, I have huge sympathies for anyone who suffers back pain. I have had chronic sciatica for 20 years, lots of useless treatment and painkillers, physio, osteopathy etc. Often it was so bad I had to literally crawl into the kitchen to fix my children something to eat.

For me the turning point came at the age of 40, when I discovered exercice, particularly yoga. Spurred on by my physio I started an programme and attended lots of classes. Slowly my back and became stronger, my hamstrings looser, and within a year my symptoms disappeared.
Now twelve years later and still exercising I am completely symptom free, my sciatia has gone, never a twinge.

I am not naiive enough to think that yoga is a remedy for all back sufferers, in fact it may be actually harmful for those with a disc or physical injury, and I do feel for those who couldn't consider yoga as an option.

I do think that the back is a very difficult thing to understand, even for medics, it is mobile and dynamic, and that doesn't translate to x rays.

I would urge anyone who is able or otherwise come to a dead end in trying to understand the root of their back pain to consider yoga. It has literally transformed my life.

A very inspirational tale can be seen here about an American war Veteran who thought he would spend the rest of his life in crutches because of back injuries he sustained in combat.

Get the tissues out- uplifting though with a happy ending.