Any advice would be greatly appreciated

Hi Everyone 

I'm new to the community, and I am looking for any advice or tips to manage 24/7 pain. I fell and damaged my back back in late 2013. Slipping my T7-8 T11-12 L4-5 and L5-S1. As you can imagine I was in a conciderable amount of pain. After having 3 MRI scans and going trough numerous painkillers. I ended up being admitted to hospital and required emergency L5-S1 right side discectomy. (Sorry this but sucks) as I awoke from the surgery the pain in my right leg was like nothing I've ever experienced it was so intense I was automatically put on a morphine pump. The operation was apparently successful however I'm left with a S1 nerve that is badly damaged and results in constant numbness to my right leg from knee to toes and scar tissue blocking the nerve. I have recently in the last few months been suffering from sciatica in my left hip down to toes with my ankle feeling as if someone is trying to break it from the inside out, it's left me unable to weight bear on this leg without extreme pain. I am currently on Dyhydrocodien, Co-codamol, Naproxen, Pregablin and Duluxatin. I use mindfulness and attend regular physio and psychology. I have a tens machine and use heat and ice packs. Sleeping is a struggle and I'm just feeling at a loss now. I am awaiting nerve block injections  at the moment has anyone any tips? Or have had any results from the injections? Any help would be greatly appreciated. 

Thanks and kind regards 

X

43 Replies

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  • What happened to you is why I have lived for at least eight years with back pain and pain going down my legs to my feet.  Now I have problems sitting, my right leg is worse and I feel like putting my leg up no matter where I am--off the chair because just touching the chair to the back of my leg hurts, I need pillows under my legs--I have declined back surgery and am afraid is damaging my nerves even further by doing this.  I am leaving for church soon so I will get back with you later.  Yes, I thank God I am still able to do things which I doubt if I will if I get the surgery (rod, plate, screws, cage, fusion, don't know what else).  I am so sorry for the pain you are experiencing.   May God's healing hand touch you and all the people who are in pain.  My prayer list is long and I can't remember names, I just have to do a blanket prayer for all the people in pain.  God bless us, one and all.

     

  • I would avoid Morphine if possible unless u r over 50.  I had Emergency L5/S1 radical spinal fusion when I was bout 26 yrs old and had terrible nerve damage + unstable stick fusion with instrumentation and sure enuf I broke the fusion 5 yrs later .... Didn't realize I had broken heads of screw until pain profession organised cat scan so radical Anterior/posterior block fusion in cage through front......bone off same graft site  more pain!!!!   So only have support instrumentation on 1 side as one headless screw on left side could not b removed... More bone graft harvest site pain (18 months before in decided to grow.....agonising ) since I have no end of neuromas developed...couldn't wait til Menopause as neuromas are horse one driven....just moved over to Morphine after many yrs of juggling the Codeine dosages and side line meds + my hero saviour med Indocid Suppositories.....kicks in the other medications and bypasses the oasophagus and organs!!!! Do a semi withdrawal every year to remind myself what is real and what am I taking for fear of it.....anyway I made it to 54......woohoo recently Introduced 20mg Morphine s/r and still using suppositories for my Anti Inflamatory, Gabapentin for Nerve root problems so please don't despair.......but make yr surgeons aware if you are not getting satisfactory answers from anyone else.    Good luck through the horror recovery stage...😄😄

  • Thank you hope you manage to find a balance that works and get some ease :) sending healing wishes :) pain does suck and it effects every aspect of you life it's not until ur in it 24/7 you realise how lucky you were before it started. Advice kindly accepted thanks 

  • Ive just started the co-codamol recently as the paracetamol onto of meds weren't helping any :( The docs have said I am too young to start on morphine so I don't know what to do :( 

  • They are trying the co-codamol as a step up from adding the paracetamol. It takes the edge off the pain in my back but not so much with the nerve pain. I've been on tramadol they didn't help any. I had a manageable balance before my sciatic nerve flared up on the left side. I am 33 however I have a young child at home think that was part of the reason she didn't want to go onto morphine. I've tried reducing and then adding before and will try again. Was really only looking for any tips on dealing with the pain, more so at night as its at its worse when I try to lie down to sleep :( thanks for the help :) 

  • Kind of feel like I'm being palmed off until I see the pain specialist again but that's not till end of April and it's slowly eating away at me just now, resulting in time off my work :( 

  • How bout Chryo???

  • Never tried chyro  wasn't sure what good it would do when you have 4 bulging discs buy anything is worth a try in this pain Thanks 

  • Mayb there's Paracetamol in one of them and that's the new go to for when pain is non responsive.....won't cover major pain hence when you can add Codeine into the scene for breakthrough.......so long as the paracetamol stays under safe level?  😄

  • Thanks Dan will ask about that :)

  • What about amitriptolene anti depressant /pain killer, depending on your kindve pain,.

  • I had to come off amitriptoline to start the Duluxatin which is basically the same type of med :)

  • Thanks for the help :) 

  • May sound counterproductive, but when I was on maximum painkillers and still getting pain, decreasing my meds helped.   I cut them back just a bit (with no real increase in pain, but not reducing so much I got withdrawals) and then after a week or so, started occasionally adding in extra again with much better result.  I really do think you get habituated to those strong painkillers and kind of lose the ability to really assess how much pain you are actually in (your mind may tell you its more when really its just needing your next "fix").  Also helps to work out with your pain specialist which meds you need as regular meds to be taken by the clock very regularly, and what you can use as "breakthrough pain" meds.   Much better to separate out your different pain meds like that, than to just randomly take whatever you think you need.

  • Understand the theory and I've used this before, so will give it another try thanks :) 

  • I mentioned that in my comments.....do it at least twice a yr and was on same meds for 25 yrs until nasty ole RA turned up and upset the apple cart....and tho it's hard for most people to get a grip with....if you are in enough pain a Rectal Anti Inflamatory helps heaps and doesn't harm yr precious organs or oesophagus ......been my saving grace over all these hell spinal issue yrs.  I have another Slip higher up and it's not needed surgery for all these years .....I also have a particularly exception GP who wields a very handy needle round all my nerve scar tissue areas. Take comfort I have got this far although there have been many times over all these years and wish you strength to never give up and take all the good info and wishes people offer to build up yr fighting spirit as you will need it but be joyful, as pain doesn't have to be yr enemy .....and be the controller of what happens to your body xoxo

  • Thank you :) one of the g.ps in my surgery is great she normally helps where she can but all medication changes need to go through the pain team now :( I am taking everyone's advice and I am going back to doc tomorrow to see what else can be done to help. That and I need a line for work as there's no way I can return when I can't weight bear on this leg. I've struggled in the past letting the pain be in control of my life but I am not quitting and letting it again that's partly why I joined on here. Sending you best wishes and a big thanks 

  • Hi G_Lou

    Your reply to Dan9878 got a little muddled so am I right in this;

    You're taking Duloxetine and Pregabalin regularly and then Naproxen and Co-codamol as your pain increases or are you taking the Naproxen and Co-codamol regularly as well?

    I agree with earthwitch, sometimes reducing or better still, stopping the 'as needed' medication can almost kick start the effect it has on you once you start taking it again. Don't stop the Pregabalin or Duloxetine though, that should only be done under medical supervision.

     Who told you you're too young to be on Morphine? How old are you? Children get prescribed Oramorph (liquid morphine) for when pain is particularly bad!

    I totally understand what the pain is like and how it affects every single day but you're on the right track doing mindfulness. Have you considered acupuncture or massage? They're good for some people; maybe ask your physio for their thoughts on it? Some  swear by yoga & pilates - core strength is so important!

    I know you want some relief 'right here & right now' but there isn't that 'magic tip' so far on here!! Do you know how long you've got to wait for the injections?

    I know, so many questions but if we know a little bit more, we may be able to suggest some other things?

    RAYJAYC

  • P.S. what dose of Pregabalin are you on?

    RAYJAYC

  • Hi RayJay 

    I take the Pregablin and Duluxatin both at max dose am and pm as well as Naproxen am and pm. For the pain I am on 120mg slow release Dihydrocodien as well as the 8/500 co-codamol every 4 hours. The Dihydrocodien is took am and pm. I have set med times and until my left side became painful I was "balanced" or coping with the pain levels I had. 

    I understand there's no quick fix, I've dealt with this pain for quite some time now and been hit with loads of different meds . 

    I will try reducing where I can and see if it helps any and also ask about the other things :) 

    My app is end of April so will be after that I imagine, I am willing to try all that needs to be tried, just not at a cost. I am hoping that the injections will help however I am a little scared at the same time. 

    My GP told me I was too young to be put on regular morphine which I took as gospel:o will speak to my pain nurse again and see what she can do to help in the mean time 

    Thank you for the advice and help all of you it's appreciated:)

  • Ask your GP for Oramorph which is purely as & when needed Morphine.

    I know it's already been said but thats a lot of codeine to be taking. Maybe ask you GP to decide on either one?!

    I'm presuming 120mg Duloxetine & 600mg Pregabalin a day?

    For night time, maybe Diazepam occasionally to get you a decent rest? Pillow between your knees? Gently curling into a 'fetal' type position? A v pillow instead of an ordinary pillow to help you stay curled slightly forward?

    I find balancing up my mattress is a 'must'! Where it sags or dips, even if it's slight, I put something under that particular part to keep me on a soft but flat surface. (Takes a while to get it right though!)

    RAYJAYC

  • Cool tip RAYJAYC bed is crucial......zero gravity the ultimate in comfort and relief same as in the pool......zero gravity exersize!!

  • Thanks RayJayc 

     Will ask tomorrow about the oralmorph. Your right about the meds. I lie with pillow curled up with hot water bottles at my hip and ankle (my ankle takes a lot of the pain) will invest in a v pillow :) I've tried every mattress topper I can find and have a small flat cushion for under my waist to support my hips to stay level but will have a mess about with the mattress again and see if it helps I've ended up on the kitchen floor a few times as its tiled and freezing which helps the nerve just not the back :o 

    Thanks again for the help sending you well wishes :) 

  • Thanks Dan hoping I get some help tomorrow thank you sending well wishes 

  • So sorry you are in so much pain it sounds like you have had a rough go of it.  Just wondered have you asked to be referred to a pain clinic ?  They may be able to help you find the right combination of drugs that can relieve your pain .  You have come to the right place people here are very compassionate and knowledgeable .  Hope you find the relief that you are looking for. 

    Janice

  • Hi Janice 

    Yes I'm under the pain team. I found this by accident looking up help with pain but glad I did now. 

    Thanks :) 

  • Cannot give any tips on medication.  Can suggest to look at other things that may or may not help.

    Psychology is a waste of time.  Mindfulness not sure whether you do psychology mindfulness or Buddhist mindfulness.  There are subtle differences between the two. Buddhist mindfulness deals with the situation you find yourself.

    cittaviveka.org/ is the Chithurst Buddhist Monastery website.  Look at teachings.

    Meditation - A Way of Awakening (2011) is a good book on meditation and mindfulness.

    It is a skill to develop means not to add layers of stress and more pain to pain by the process of not wanting the pain.  It takes time to develop the skills needed not to do this.  Psychology as taught by the medical psychologists does not do this.

    For sleeping use a board with a carpet on top.  This will force you to relax before sleeping.  This is in comparison to a mattress which will allow you to sleep with muscles in tension which is not good.  Experiment and see if it works or not.  You need to do your own investigation here.

    You need to see a McTimony chiropractor.  The purpose is to find and remove any microcramps that you have along the spine.  Microcramps will compress structures and generate pain.

    Alexander technique will help you become more aware of your muscles so that you can help yourself not to tighten into pain and cause more pain.

    You are going to need ways to get more sleep.  Not enough sleep and you lose control of your ability to finely control your muscles.  Not having enough control of your muscles will generate more pain.

    Yoga is a good set of exercises to look at to help you lengthen out contracted muscles.

    This is a lot of work.  This will involve a lot of investigation and studying to determine what things will help in the long run to reduce the pain and to keep the pain reduction.

    Physio has a tendency to be one size fits all which in some cases can lead to more pain.

    Hope this helps.

  • I am aware of the  biopsychosocial model and I am also very aware of its flaws as it fails to comprehend the human being as an engineering system with feedbacks.  It lacks understanding of what a stress breakdown point is in engineering terms.  Of course all pain clinics have psychologists.  If the physical medical model is wrong find a way to blame the patient's thinking rather than attempt to fix the physical medical model.

    I have been treated by a McTimony Chiropractor on the NHS since 1994.  Still receiving treatment for a condition that cannot be cured only prevented from being any worse than need be.

    Physiotherapy I have found does not work with its emphasis one size fits all.

    Its your investigation and only by investigation can you find what works and what does not.

    All the best.

  • Hi Dan 

     I attend physio through the pain team now however in the past I've done physio and was made to push through the pain which in turn has done more harm than good however the pain physio is more about me and my limitations as well as what can help to assist my body to cope with the pain. I do a lot of core strengthening exercises to help too. I also attend pain specialist psychologist who has got my arse off the ground to a more positive me so it's been worthwhile in my opinion. I think everyone just give advice on what has helped them and for some people these specialists don't get them any better. I'm taking everyone's advice and using what I think will help me. You have all been a great help :) 

  • Hello G-Lou

    Do you use a medical heat pad ? Antipatch has proved useful for sciatica. I realise that you like me have chronic pain. Mine for almost 40 years. At the end of the day it's all about management and using the least amount of medication possible. Diclofenac suppositories are a must for me although I do wait until the pain level is at least 8 before I take them. I am allergic to morphine can just about get away with Dihydrocodeine twice daily. Pregabalin at 150 mgs twice daily. Tramadol  made no difference whatsoever.  Daily exercises and rest with heat when necessary. I use games to switch my mind from pain and I craft a lot. I am fortunate that I only have myself to think about and to look after. You need a GP that you can trust he/ she is more easily accessible than others. Good luck 

  • Hi Suffolklamb 

    I've not got a medical heat pad. (Where do I get one?) although I use a hot water bottle which eases it at times. Thank you for the advice :) I appreciate everyone who has took the time to message me. I also use craft things to keep my mind busy but at the moment that's not happening Pain isn't something I would wish on anyone it totally demands everything you have :( kind regards and healing hugs 

  • Hello G-Lou

    Heat pads are available from any large chemists. Benefit is that you can lie on pad or place it anywhere needed with 2-3 levels of warmth. No danger of being burned or scalded. Actipatch is a non invasive non medicated device. A small loop through which a current passes. If a tens works for you it's worth a try. If I sit or lie down on my back for more than 15 minutes I get sciatic pain. I read all the testimonials and decided to give it a try. As my left knee locks I started wearing the loop there. Now as long as I wear the loop I have much less pain and no sciatica when I sit or lie. Downside is that it costs £22.95  for 720 hours.  I can't be without it now. I still have to rest a lot and I still have pain but I can also get out and about a bit more so worth every penny. You can buy a trial loop through Facebook for £2.95. Lasts about 13 days. Hope this helps you

  • Thank you will defo look into it. I'm housebound just now can't wait without crutches and even then it's agony :( ANYTHING is worth a go :) 

  • Hi Johnsmith 

    Wow thank you that's a lot of things to try :) will start researching esp the mindfulness as its psychology based I was trying to learn :o 

    Thanks for the help 

  • I have to respectfully disagree with you johnsmith; psychology is not a waste of time.

    Without it, I would've ended my life  by now. Whatever model you're professing to claim is best, the fact remains that I rely on my psychologist & her psychology a great deal.

    It's a valuable resource for  people in managing their chronic pain. It gives people motivation to gain back some control and actively participate in daily life.

    Of course there are going to be examples of it not being beneficial but for many it is, so to use such a sweeping statement is possibly harmful.

  • Thank you for the reply.  I do use sweeping statements sometimes more than I should.  If I give more fuller explanations then what takes 10 seconds to read in the sweeping statement will take a take half an hour read in the fuller explanation.  How many people want to spend half an hour to read something with all the i's dotted and the t's crossed.

    I have had counselling training and bereavement counselling training and have had psychology training back in the 70's and 80's.  At the time did not know any better and assumed that what I was taught held truth.  After my road traffic accident when I was forced to investigate for solutions to the situation I found myself and started to read the research carried out by psychologists in order to improve my situation I became to find that there was much untruth both in the research  and how the research was presented.

    I found that the tenets of engineering principles, stress breakdown points, physics and  catastrophe theory were more accurate in regard to my situation.  Counselling which I once regarded with the greatest of respect failed to give one the tools to be independent and manage one's own mental health.  Mindfulness and meditation which the psychiatric and psychological profession used to dismiss as snake oil was what I found to be effective.  Couple this with the knowledge I gained from Alexander technique, Massage. reflexology, t'ai chi, yoga and the Nuffield A level biology as well as McTimony chiropractic treatment I was able to develop tools for investigation and mind state modification.

    There is a saying from Zen Buddhism which says that: "mind and body are not one neither are they two."  I have learnt that you can have counselling and the mind may shift a little.  Change the way you move and the way you breathe and the mind shifts a lot.  Feeling suicidal have to have a reason to keep going.  Go to sleep for an hour worked very effectively.  New research indicates that waste products are not cleared from the brain when we are awake.  Waste products are cleared from the brain when we are asleep.

    Handling a health disability requires that the brain has to work quite hard.  It is hard work in comparison to the situation when you have no health disability.  There are engineering restraints on the amount of work that parts of the brain can do.  Psychology as I have been taught and many University students have been taught does not recognise this.

    Hope this gives a more fuller explanation of my thinking.  Any queries I will be happy to try and answer them. 

  • Hi ...Like you im in a lot of pain over most of my body, its been with many many years, i have tried every thing that is available and some that are not. The only escape i can tell you about is music, i have tinnitus and one of the ways they teach you about is distraction, and i regularly plug in my earphones and listen to my music and play a card game on laptop i slowly realised i couldnt hear the tinnitus and the pain didnt seem as bad. It doesnt make it go away but for an hour or two i get some relief. I will say this if i had a choice pain or tinnitus i would choose pain............take care

  • Hi Docnai 

    Glad you have a way to release and block it out for a short time. Thanks for the advice 

  • Hi Everyone 

    Went to my doctor on Tuesday, she sent me straight to accident & emergency. While here after examinations, it's been decided I require a MRI to be done. Ortho doc thinks I have two (L4 & L5) compressed nerves so may need further surgery. I have been put on oralmorph temp till they can monitor how much pain I'm in then they will prescribe me a time release one. Still very much in a lot of pain, but at least they listened to me, I knew something wasn't right. Will keep you all posted Thank You again  

    Gemma

  • I often wake up at night about 2:30 am due to lower backpain (3months now) toss and turn and very tired due to lack of sleep.? I m 50 by the way I have tried acupuncture and osteopathy and  reflectxology but recently but the ache and pain do not go/ I do yoga-Pilate 4 times a weeks- could anybody help me?  I am on the menopause n suffer badly by hot n flush n boating and stress. I have taken pain killers and hot n flush relieve but they gave my gastric ulcers so I avoid them.  I haven't seen doctor yet

  • I found taking amtitriptline at bed time very helpful for nerve pain,also diazepam,and lyrica all together, plus your own medication.Hope you can find some help for treating your pain.As for the injections I also get them every six months,but as in your case they do not seem to make much difference,Talk to your doctor or consultant the latter was the one that put me on the medication I mentioned.  Kind Regards Seamie

  • I took amitriptyline and gained forty pounds. I couldn't handle the weight. I quit taking it and I have lost the weight, thank God.

  • Hi everyone just a quick update got MRI done I do have two compressed nerves thanks to a bulging disc. I've to get surgery to release them hopefully soon. I've been put on 25mg of MsT twice a day and still use the oralmorph up to six times a day still really struggling to walk but at least they are trying to help now. Hoping my Chronic Pain doesn't exceed to the nerves once they have been decompressed Thank you so much for all the help :)

    G_Lou xx

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