Spinal Fusion/Disc Replacement

hi eveyrone, can you help me, i am looking for some advice?

I have L5/S1 disc degeneration and was diagnosed in 2012 but my problens started in june 2011. I have tried all the usual stuff, amitryptline, gabapentin, diclofenac, ibuprofen, tramadol, all the strong pain killers as well as various antidepressants.I can t take ibuprofen anymore because they have irritated my stomach. I take omezprazole to help with that.

i have recently been on Butrans bunepormorhine patches for 6 months but have had to stop using them as they were burning my skin. I am now back onto 8 x codeine a day and 8 x paracetamol a day but it just isnt enough. i am into my 8th day without the patches and i am climbing the walls, not with withdrawal but with pain. i just can tcope but i cant take anything else because i always suffer side effects. the best pain relief i have had is the patches but they were burning my skin to the extent that i was having to change them everyday just to get some relief but they are meant to last for 7 days.

the morphine patches have stopped my eating and affected my stomach to the stage that i am now unable to eat anything i am surviving on Mocha coffee, i cant even eat sweets anymore? this had been going on since i started using them in August of last year. I have had a duo-dendoscopy to see if there was anythng that could have been preventing me from eating, they were looking for cancer but thankfully didnt find anything. i am due to go back to see him in 2 weeks but i cant cope anymore and my GP is a total waste of space? I have lost so much weight i am skin and bone, i know i need to eat but i cant because when i try i feel as if i have a tennis ball stuck in my chest. I dont know if the pain is in my chest or between my shoulder blades in my upper back?

i had a facet Joint injection at the beginning of jan which was to hopefully help with the back pain so that i could reduce the strength of the patches to help me eat but that hasnt worked and i have had to come of them anyway.

i dont know what to do, my back hurts, my stomach hurts, i have pain in my shoulder blades, which isnt my normal back pain and i feel that i have a super tight belt around my ribcage. i know this could be a sign of IBS but surely they would have seen that when i had the duo-dendoscopy, wouldnt they?????

i am at the end of my tether, i am crying all the time and i can feel myself sinking further and further into despair. My nuerologist said he will refer me to a Pain Consultant but i will have to wait to see him and then he will just give me more tablets that will probably fog my mind and make me feel like rubbish. i work full time but i have recently been really struggling so i had to take a couple of days 'time out' which isnt me. this thing is controlling my life, it is all i can think about which is making me even worse. help help help!!!!

has anyone had Spinal Fusion or Disc replacement as i am seriously thinking of looking into this and going private to get it done.

my nerologist says 'there is no surgical target' and that the problem i have is not impacting on my nerves but the pain feels like it is. i have lower back pain, leg pain, bum cheek pain, cramp in my legs, pain in my feet, i need help but i feel that i am taking 1 step forward and 5 steps back at the moment. my head is clearer becasue i am not on the morphine patches anymore but the pain is crippling me and i cant cope anymore.

sorry for the rant but can anyone help me with some advice?

:-)

x

60 Replies

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  • Hi I'm sorry but I can't be of much help apart from the fact that they can't detcect IBS, there is no test for it ,they can only test to see if it's nothing else,when the test is negative that's when they say IBS. As for the rant ,rant as much as you like we all rant from time to time. I don't know much about your problem but I can certainly EMPTHISE with you for Pain. I really hope someone can be of some help to you. Take Care

  • Hi gemini71 thanks for replying it means a lot. Does IBS stop you eating though, I have a few mouthfuls of food and I am in pain in my chest/ upper back, it is awful. I have been on co- codamol before for about 2 years so I know I can take codeine but the last few days since I have just been taking the codeine on its own my stomach has been so much worse I cant even eat Jaffa cakes now or sweets without feeling discomfort in my chest in fact it is there virtually all the time I don't know whether it's anxiety,my stomach cos I haven't eaten anything properly for about a week or my back that is getting worse. I am a mess :-( do you suffer from IBS and how do you manage? Xx

  • Yes, I do I suffer chronic IBS, the more anxious you are the worst it is. As for food every time I eat I go to the toilet, and I'm in constant pain. I take Co Codamol but I certainly wouldn't recommend you take any pain killer especially Codeine with out something in your tum, even if it's just a couple of biscuits. Also don't eat sweets or chocolate they irritate IBS. Try a bag of crisps ( plain ) Your also not helping yourself by not eating, because your bodies lacking nutrition which will bring you down, so just try and eat something, especially before codeine. If I can be of any help please ask. Take care. Don't suffer alone.

  • Thank you so much what you have said could be why I have felt worse over the past few days but I am not able to eat, even if I wanted too. I was hoping my appetite would come back full force after stopping the patches but 10 days in and it still hasn't. I need to try and calm down I know I do but its so hard when all you feel is pain and discomfort and you know that all your true friends and family are worried about you. I try to speak to my hubbie but he doesn't understand and just thinks I need to change my GP and also get some counselling I think he thinks "it's all in my head" but I known the pain is real because I can feel it. It's hurting my body so it must be right? X

  • The MRI in my hometown showed not much of anything. I kept on insisting that my pain was so much in my lower back, middle back, neck.. finally I was sent to Mayo Clinic and did their MRI - they put you under general anesthetic to make sure that you don't move and that they get the best pictures. It showed a little more than it did at home. We knew that the problems were inflammation and some mechanical issues.. Physical therapy was prescribed. I really kept bugging them a lot with complaints of really bad pain in my back.. so they gave me radioactive material in my veins and I had a bone scan.. that is what revealed what was really going on. I had areas that lit up like a christmas tree indicating severe inflammation along the spine..almost like it was woven from the brain to the coccyx. Where I told them it hurt is where the most lighting happened. I have a lot of mechanical issues in those spots.

    There are things that need surgery but Mayo Clinic Doctors told me that 70% of patients who have back surgery had gotten worse, some much worse after surgery. They will not be doing it unless not fusing it cuts circulation off or nerve compression is so bad that I can't walk or stand up or sit.

    They will treat back pain by only 5 ways..

    A. injections of corticosteroids

    B. zap the back in hopes that shocking the nerve will settle it.

    C. Put permanente block to the nerve that is offending.

    D. Surgery (which very few will be done)

    E . Take classes to learn to cope with the pain/ stress/ fatigue.

    Yes they can try medicines as well. Pain killers (prescription) are included

    along with massage, chiropractic, physical therapy and other ideas that

    they might have in that last one.. (coping with it)

  • Hi Yikes2

    thanks for your reply. I have had 2 MRI scans at SalFord Hospital in Manchester. The 2nd showed that there had been detioration in the time between the scans, in fact i virtually have no disc left in the area that bothers me the most.

    The point is that i cant seem to take any pain killers or antdepressants without side effects which are very often just as bad as the pain itself so taking them defeats the object really.

    I have been on a pain management plan that talked about 'pacing myself' and 'exercise' which i understand all about. I had a lot of CBT while i was there which talked about the 'stressers' that caused my pain to be worse.I was told that i needed to set myself a couple of tasks to do in a day and if i felt tired to rest blah blah. In an ideal world i would be ok doing that, resting on the sofa watching daytime tv, just taking whatever medications i needed to help with the pain, whether it made me 'spaced out' or 'foggy' but have no pain. Doing a little gentle exercise and if i felt tired rest up a little and then do a little task to while away my time......

    But we dont live in an ideal word and i want to do my job full time and i want to have a productive life with my family which at the moment i cant have becasue i am in too much pain. Whichever way i turn there is always a wall that stops me. I appreciate your comments, i really do, and i understand that surgery could probly not be the answer but at the moment i am willing to do anything to just 'give me some peace'

    thanks

    :-)

  • You know what? Please don't take this wrong.. please... but you are describing the circumstance of when a person really needs to be on some type of disability. You are making a goal for yourself and have been making a good effort to be gainful but it's just not working for you... Sounds like you have just enough energy to take care of only yourself. Meeting your needs to just get going must take 70% of your energy that you can possibly spend... I think that maybe it's time for you to apply???

    When I started out on pain pills, I had to quarter them.. I told the doctor that I would be doing this so that I wouldn't be prescribed a time released one and then end up in overdose.. eventually I went up to a half a pill.. and I stayed there for a long time. I took that pill when I took my over the counter pills. One night I did get brave and took a whole one which put me in heaven to sleep. I stayed there forever after... but there were nights when I took one plus a half.. I was prescribed 1 or 2 tablets.. I never puked doing it this way but if I started off taking a whole pill, I puked for 12 hours and was dizzy and sickish.

    I am going to go out on a limb here and suggest looking into medical marijuana.. even in pill form.. or taking less than a half pea size to

    inhale as in smoking.. I know that you work so I would caution you

    against this if you have to drive or if work might test you.. and keep

    in mind that if you have an accident at work, they will test for drugs

    usually.. (insurance claims) Marijuana is excellent for nausea..

    Don't downplay your disease.. it's major enough. Pain relief and

    upset tummy medicine are serious stuff.. I would like to see

    you be out of pain and to feel well again. =)

  • Hi yikes2

    I am not sure about legal marujana, I wouldn't even know where to look, sorry. I live in the UK and not sure where you are? I think if I can just get my gp to listen to me and give me a bit more guidance then maybe I will be ok. All the lovely people on here have given me some wonderful advice that I am going to take onboard, 1st stop is sorting my GP out I think

    Take care

    X

  • Just about the eating side of things ,I have problems eating due to morphine as it slows down the movement of food and causes constipation in me .I dont think mocha coffee is the best liquid as coffee can irritate the stomach lining.I use the food replacement drinks -they come in different flavours and jelly seems to slip down.Try blending some meals to a liquis consistency and little and often.Your doctor should be able to prescribe some high calorie drinks wit all the vitamins and things in x

  • Hi Pippins2

    We have chatted with each other in the past about the patches and how it affected my eating.

    I didnt realise that the mocha coffee could be irritating my stomach but it is all i can seem to have that has any sort of protein or fats in it and doesnt seem to make me feel uncomfartable. I probably have about 4 or 5 a day? I have tried the meal replacements but couldnt even get those down without feeling uncomfortable. A locum at my surgery gave me some Fortisips but i couldnt even have those.

    I am off the patches now because they were irritating my skin so much, my gp couldnt wait to get me off them to tell you the truth. I was on the 20mg patches and i asked if i need to wean myself of them but he just said ' no stop using them straight away' i asked about the side effects coming off them straight away but he wasnt concerned because he was giving me Codeine to take which is also an Opioid. He put me on Codeine and paracetamol so i could pace them. I have my alarm on my phone going off every 2 hrs now so i can take them but i am counting the minutes till my next dose.

    I was hoping my appetite would have returned and my eating problem to have subsided but after 10 days it still hasnt so i am somewhat concerned.

    I just dont know what to do. I am back at the stomach place on the 23rd Feb so i am hoping that they might have some answers for me.

    Thanks

    :-)

  • Hi Diane , I too suffer with similar symptoms and let me assure you that I know exactly how it feels to be in such pain you could cry, you are not alone. My husband is great but it's hard to expect them to know what the pains like when your climbing the walls. I have been having epidural injections in my back and I know that they can be great for some people , they help abit with the sciatica pain but still leave the leg pain , have you tried these? Also as for your stomach and eating issues pippin2 makes agood point I love coffee but it might not be the best thing to be having, meal replacement drinks or blending some vegetables for a thin soup might get you back eating at least a little bit of good nutrients. Your MRI scan was 2011 did you say, push for a more up to date one . I wen last week to see my consultant to ask for injections and he said No! Can't go on like this, by Thursday id had an MRI and now have to go back but I'm thinking it might b surgery as I have facet joint degeneration and a slip in my spine and to be honest I'm glad because I too can't go on much longer. When you go back don't be put off with wishy washy response from your GP that's there job and they should want to help you. Ask to be referred back to hospital for an up to date MRI and also please don't feel that it's all in your head, it's not and you deserve to feel like you matter.

  • Hi Coolmum 101

    thank you so much, we sound so much alike. i have had 2 scans, the last one was in 2013 about 12mths after my 1st and it showed detioration so i dont know what it would show now?

    I had a facet Joint Injection at the beginning of jan to help with the pain but i am not noticing any significant improvement. My consultant said to email him in a month, which is Monday by the way counting the days :-), and he will refer me to a pain consultant but they will just give me more meds to take? i will have to wait for that appointment which will probably be weeks away and i cant wait that long i need help now?

    my gp is a total waste of space, he isnt concerned that i am not eating and when i see him i can only see him about one thing either my pain or my stomach, ok then!!!!!! i go in and he says to me' what are we talking about today' as if he cant wait to get rid of me. my hubbie wants me to move to another one but the trouble is i have been wih the same gp for the last 24 years and to sart again with someone else just seemds to daunting to me, he is meant to know me isnt he.

    last time i saw him i asked about Targinact tablets which are slow release Morphine based pills that you take twice a day but they have something in them to protect your stomach. my friend is on them and she says that they are brilliant for pain relief. He just totally dismissed me, siad he hadnt heard of them, would have to look them up and that they were too strong for him to give me. i just wanted to cry. i knew that as soon as he took me of the patches and back onto just codeine and paracetamol that i would get like this, it just isnt enough. the patches were briliiant for pain relief but they made me 'foggy', sweat at night, disturbed my sleep, itch really badly and just totally took my apetite away. I know i need to eat but i just find it really hard. my hubbie is so worried and i think he is getting to the end of his patience with me now.

    i have an appointment with my gp on Tuesday morning and i think i am just going to have to breakdown in front of him arent i instead of trying to look brave and 'together' as if im coping when i really not!

    sorry rant again!!!!

    :-) x

  • Diane, your GP sounds horrible! I have to say your hubby could be right on this one. Maybe a change of GP would be a good move for you, I had been with mine since a child and then moved about 7 years ago and honestly my GP is really good in I can really talk to him and he has always pushed everything forward when I've asked. Maybe a fresh pair of eyes on your pain could help ( it's got to be better than the clown your seeing now!) I totally get it honestly I do, I've done pain management and physio and you name it I've tried but I too have had little success. Now I know it's a bit left field for some and everyone's different but have you tried things like acupuncture or a chiropractor? I know that for me I swim once a week which I know it's not a lot but I think it helps with keeping things moving it does make me feel abit better . In terms of your pain when things got really wall climbing bad I went back to basics and started again to see if it changed the pattern have you tried going back to basics like cocodamol and anti inflammatory gel rubbed on also tens machines have come along way since they came out and they seem to have really changed since I've tried one but it could be worth ago, nothing ventured! It seems to me that you've reached that point of I can't go on like this because I've felt that as well and it can seem like there's no enjoyment left in life , ive got kids and I think I've missed out with them and Ive thought jeez if my life's gonna be like this what's the point but you deserve to be pain free and I hope you get there , ps my mother in law has lots of food problems which affect her stomach, she got probiotic capsules from the health shop which are way better than the drink ones from supermarkets and Manuka honey that she has every morning and she said what a difference it has made to her digestion and stomach . Take care x

  • Hi cool mum

    Thank you for your help

    I have decided to try the probiotic capsules, it can't hurt can it. I am going to cut out the mocha's and have peppermint tea with some honey in it, just to sweeten the taste. There is a lady doc in our practice that was really nice last time I saw her ( my GP on holiday) she was the one who organised full bloods and a stomach scan after my gp had ignored me about my eating? She thought I had gall stones so organised everything for me as an emergency case when I next saw my own doc he was quite attentive saying she did the right thing let's see what the results say? That was last August and I am still trying to sort it out. I keep telling him I am not eating he just isn't listening to me. He just says when is your follow up appointment and lets see what they say. I know it is the NHS but he just doesn't seem to care? I am seeing him on Tuesday morning so I am going to tell him exactly how I feel and that I not coping well instead of just being polite in the chair and letting him bully me. He will just say' but whatever we try you always get side effects' I have just lost all confidence with him which maybe could also be why I'm feeling so lost? Anyway I feel a bit more positive now after unloading everything. I am going to unpack my tens machine, sort my heat patches out, keep popping the pills and like you say ' go back to basics' I am even going to speak to my boss at work and tell him I need some help and I need to reduce my hours. There decisions are made :-) thank you so much for your help

    :-)

    Xxx

  • that's better. pace yourself.

    x

  • I was given a tip by a newzealander nurse who was working over herd years ago, when your appetite goes get Floradix. It's made of natural plant extracts and gives you the essential vitamins and iron, it's gentle on the stomach too. It doesn't taste great but I put it in a bit of warm water and that made it easier to take. Once you get your vitamins and suff in you your appetite will improve.

    Have you got a tens machine? I had a dual channel one that you could adjust the intensity and the hertz it worked on.

    It's not a magic device but it did help me keep this side of sane. You can wear it all day if you need to.

    I just wanted to say that I've been there and know how desperate you can get. My hubby spent about four hours one night hanging on to my ankles as I found that helped.

    One doctor told me I was on enough medication to take a horse down, so I told him to fix me and get me off them ASAP!

    I kept putting the ball in their court every time they made blasΓ© comments. They gave me my second surgery a year to the day from my first.

  • Hi

    that sounds good, i will have to get some, do you know where i could get some from?

    I have a tens machine and it is a dual channel, it is an all singing dancing little thing. It is good while you are using it but the effect wers off after about 15mins.

    i sleep with my legs over my hubbie cos that helps. its called the SOENS position i think, i learnt it at the pain management programme. he says to me' do you want to get in your position luvey' bless him :-)

    As i said to Coolmum i think i am just going to have to lay it on the line with my GP, tell him i am not coping and that unless he wants me to 'totally crack up altogher' he needs to get his act together and help me. Actually just chatting to all you lovely people is helping me so thank you.

    xx

  • Hiya

    Been looking for the thing you told me about online. Wow there are loads of them, I found this one ( see link to amazon) this sounds like it could help, what do you think, is it the one you meant

    Please let me know

    amazon.co.uk/gp/aw/s/?ie=UT...

    Xx

  • Sorry I couldn't see what that link was as it opened Amazon on my home page! You can get Floridix from Tesco these day, just used to be from health food shop.

    I have acupuncture through the pain clinic, have you tried that?

    I hope you wake up today with a more positive vibe, even the feeling of taking control can help you find ways to manage the pain effectively. I must admit when I reached crisis point I treid everything from osteopath, chiropractic, reki and every supplement under the sun.

    Please do not get to the state that I did when I took my pills and then took some more in desperation to get rid of the pain.

    It's great to have a place like this to chat about it to others that understand,20 years ago I felt understood, overwhelmed and scared, and alone.

    I agree with the other poster who told you to change GP. You do have choices x

  • He

    Hi have bought some floradix intestcare care today as well as a wraparound heat pad that's being delivered tomorrow. Gone back to basics as advised by cool mum. On Tuesday I am going to wipe the floor with my gp and demand he do something to help me. There positive thoughts are now restored, but only cos of all the brilliant help and advice that I have received from you lovely people so thank you :-)

    Take care

    Xx

  • Hi there

    I'm sorry for what your going thru I'm 28 and been thru a lot myself when it comes to pain and stomach problems I have both problems I don't sleep eat don't work I had a spinal fushion and it was mandatory if not I would be wheelchair bounded but it was the worst thing I could've done in my life it's ruined me into almost nothing they open your stomach and and back and it just makes everything worst they have me on pain meds (which are no help) but I refuse to go higher because I hate pain meds it's not easy to deal with but the mind is the most powerful thing you have be able to cope and accept the issues I know it's difficult but I wouldn't recommend you the surgery not only because of my experience but because I know lots of ppl that don't see any help whats so ever when it comes to it my surgery was jan/17/07 and I'm still battling to walk correctly I hope I was able to help a bit when it comes to the spinal fushion as for stomach I'm getting dozens of test still at the moment

  • Hi manoli

    thank you so much for your advice, i will take it onboard. i printed something out of the web and it said that the success rate is 50/50 so not good really is it.

    i think it is because i am just so desparate at the moment. my Neurologist has said on numerous occasions that there'is no surgical target' and i trust him so i think it wont be a line that i will be going down unless he urges me too.

    thanks for your reply

    x

  • No problem DianeT

    I know exactly how desperate someone can get its really not easy and nobody really understands what you going through but you I hope your Dr gets you well enough good luck again

  • hello duane

    if yiu stopped your patched 10 dys ago syddenly cos they were making your skin sore 0 then i am sorry but you are having withdrawal symptoms.

    advice is never come off strong meds without reducing.

    some good advice on here from people in si,ilar as you.

    you ent to the pain clinic and the first rule they always give is to pace yourself. you must listen otherwise there is no point in wasting their time and money. we all want our live back and to be able to run, jump, dance and earn our keep. pain management is that. managing your pain in a way that wukk hioefukky give you some life.

    don't foo foo daytime tv. for many that is all they have.

    stop fighting those trying to offer you help and ideas. lot of experience here and at your pain clinic. many people have ibs 0 it is common. some like my husband have to wear incontinent pads. at 6 2, a former sailor in the rn he finds it horrible. but he listens and takes advice.

    sorry but i have to say this.

    ask yes but listen and don't expect miracl cure if you won't help yourself.

    pat x

  • Hi Paton

    we have chatted before about the patches, i think it was before christmas and i was thinking about coming off them then but i didnt even though my gp wanted me too but had no other options for me at the time.

    I was my gp that just took me off them, he isnt concerned that i am not eating and when i see him i can only see him about one thing either my pain or my stomach i go in and he says to me' what are we talking about today' as if he cant wait to get rid of me. my hubbie wants me to move to another one but the trouble is i have been with the same gp for the last 24 years and to start again with someone else just seems to daunting to me, he is meant to know me isnt he?

    Last time i saw him i asked about Targinact tablets which are slow release Morphine based pills that you take twice a day but they have something in them to protect your stomach. my friend (from the pin clinic) is on them and she says that they are brilliant for pain relief. He just totally dismissed me, said he hadnt heard of them, would have to look them up and that they were too strong for him to give me. i just wanted to cry. i knew that as soon as he took me of the patches and back onto just codeine and paracetamol that i would get like this, it just isnt enough. the patches were briliiant for pain relief but they made me 'foggy', sweat at night, disturbed my sleep, itch really badly and just totally took my apetite away. I know i need to eat but i just find it really hard. my hubbie is so worried and i think he is getting to the end of his patience with me now.

    I read everyones comments and have learnt some interesting things such as i am going to cut out the mocha coffes, stop eating sweets and get some Floradix which will hopefully help my appetite to return.

    I spent 3 whole weeks on the pain management plan and did everything they asked of me including all my 'homework and exercises'. I came away with lots of knowledge most of which i have not forgotten so it wasnt a waste of their time or money, but i 'need to keep' the only piece of me that this pain hasnt taken away which is my job.

    If i did everything that the pain management programme said then i could not have that. I am coming to the conclusion that i 'am going to have to' reduce my hours and also 'ask my boss' for help with my job, i am a stressed accountant, so the things i learn from the programme have sunk in.

    i was not 'foo fooing' daytime tv by any means, it was my saviour years ago when i was unable to work whilst recovering from an operation but at the moment, in my life,it is something that i want.

    I think you have misunderstood my reply to Yikes2 and if you read my other replies i think you will see that i just want advice to try and help myself as well as my family who are struggling along with me.

    Diane

    x

  • The hardest thing to come to terms with when suffering from chronic pain is that we are not the people we used to be and we cannot do all the things we used to. Something has to give. For me i had to give up on the new career I was training for, and cut my hours down at work. As a single parent I couldn't neglect my children. Cutting down my hours has helped my pain and made me a happier person in that respect (and nicer to live with). I use Butrans (20+5) patches too and find the itching and burning is lessened by keeping them absolutely dry, the water is the problem for me. I don't have any other side effects. Accepting that you have to give up something so important to yourself is very very hard, I'm still grieving in a way, but I have learnt that my job does not define who I am. Neither does the pain.

  • sueboo puts it much better than be diane. pacing yourself i all part of the treatment - just like giving you a med. realising that you can no longer have the life you once had.. yes you can ignore those who do know what you are going through and end up om a worse place or take advice and hopefully things will ease a little.

    there is no magic wand that says if you do this and that or take one drug a;; is better and you can have a family life, work and run roind doing housework at weekends.

    it is an invisible illness wgich family and friends find so hard to understand.

    anyway try and stop fighting it and those trying to help. if the lady doc was good - ask for her next time.

    pat x

  • Hi DianeT,

    So sorry to read what a really tough time you are having.

    You have had lots of advice and I hope you will be able to find something amongst it which you can use to ease your situation.

    I've been the worlds worst ( in my opinion anyway!!) at pacing. I've been at the chronicle pain unit for well over 4 decades and have had 6 prolapsed discs, various major surgeries and lots of pain procedures and meds throughout that time.

    The one reliable thing I have learnt throughout all this time and pain is that the old Buddhist saying ' What we resist, persists' is SO true. I have fought my condition for years and years, trying to do and be what my body just doesn't allow and my body fought back - big time.

    I am finally learning to accept - not in a miserable way, but in a kind way that there are things I can do and things I can't. Things I can pace and things that I need to let go of and focus on giving my body the best chance to heal whatever it can.

    Yes, it is a bereavement, a huge sense of loss at times and it's an ongoing adjustment as my condition is degenerative.

    I've had neck fusions, with and without metalwork and a lumbar artificial disc. For me these surgeries were beneficial BUT they didn't make my body do all the things I so badly wanted it to do.

    Having had so many different treatments for so many years and looking for something to make it better, it seems quite strange to finally start to recognise that I have the power to make a real difference myself.

    I totally understand now the power of how we think about our pain. The 'it's all in your head' stuff used to sound so lacking in empathy and understanding. I now know that it's probably the one thing that we can have some power over.

    I highly recommend you look into Mindfulness - john Kabat Zinn's 'Mindfulness Meditation for Pain Relief and / or Vidyamala Burch 'Living well with pain and illness'

    There is a frantic urgency in the way you describe your pain and health - which I totally get, we just want to feel better but this urgency is probably affecting your gut and your pain far more than you may know at the moment.

    I really wish you some peace and some ease from your symptoms,

    Shirley

    😊

  • Hi there, I'm sorry to here all that that you are going through and believe me I can simperthise as 8years ago I was a perfectly functional women but within a few days I was having emergency surgery on 2 prolapsed discs the same levels as you.I then had four yes four microdysectomies and after little or no improvement I had a spinal fusion and my new surgeon called this a salvage operation,this helped a little but by this time I had so much nerve damage this was worse than the back pain,I now have no sensation down my left side bum and private area causing problems going to the loo!!! I then went quite a few years trying to deal with all the problems myself by then I'd had all the pain medication I could possibly be on injections ect and now iv been on morphine patches about five years and like you its caused awful problems eating,I have little or no appetite and have lost four stone nearly.I think the end is in site for me as in December I had a trial nerve stimulator fitted and it was like a miracle and worked amazingly well and I'm now waiting to have the full implant in the next few weeks.I really hope you get some relief as I have been so lucky to have an amazing GP x

  • Hi Sharonb45,

    Sorry to hear of your tough journey too 😰

    I'm keen to know where you are having your SCS fitted? I'm heading that route myself I think.

    Very best wishes,

    Shirley

  • Hi,I'm based in Huddersfield but having it done in Leeds x

  • hi Sharonb45

    wow i feel as if your problems have put mine to shame, i feel quite silly now after going on about all my woes and everyone else on here is suffering just as bad if not worse than me :-(

    Can i ask how do you manage with the eating, i know i have now come off the patches but i would be prepared to go back on them if i could just at least eat something. my appetite went when i started on the patches but i now think that i had a slight problem with eating before hand but i am not able to anything at all now without feeling great discomfort. i came off the patches 10 days ago now so i thought my appetite would have returned but it hasnt and i am still not able to eat anything.

    How did you manage losing all that weight, that is a lot to lose.

    i am in my fifties, i am 5ft 3in and have a relatively small frame but i am now at 71/2 stone but i look like skin and bone, technically according to my BMI i am borderline but just looking at me you can see that i need to put on weight.Size 8 clothes are falling of me and some size 6 jeans fall off me, i am so worried about my weight.

    anyway i have been pro-active today and bought myself some food supplement that was recommended by Danslatete so i am hoping that might help me. i have also ordered a Hotties microwave backwrap from Amazon that has some really good reviews from people with lower back pain. Anything just to keep me going really until i can get myself sorted.

    I am going to BEG my gp to do something when i see him on Tuesday and if he dismisses me again i am going to change him to a lady doctor in the same practice.

    thank you so much for your kind comments and i hope everything goes well with your next op in a few weeks.

    keep in touch it will be nice to hear how you get on

    Diane

    xx

  • Good morning Diane,

    First of all please never think to your self that someone's pain is worse than yours because at the end of the day if your pain is awful it's awful and if you're suffering then at that particular time then you carnt measure your pain against someone else's.As for the eating side it's very hard and I just eat little and offen and when I'm hungry but I must say that it has taken its toll on my body and my skin is very thin to touch,we don't go out for meals much anymore as I don't enjoy food so that's another pleasure taken away from myself and my family but you will probably know all about that.I am hoping that after I've had this next operation I might be able to re train and I'm hoping to be able to become a councillor and give something back to the people who want and need advice like I did/do but thats a bit off yet.I was only 36 when my back first started so it's been a long hall but I feel lucky and privileged to have had my wonderful Husband there to support me but I do to a certain extent feel like we've missed out with the kids as quite a few days I've been in bed!!! πŸ˜– All i can say is do what you can when you can and also if you need anything else just ask.

    Sending gentle hugs

    Sharon x

  • Hi sharon

    my skin is the same, thin and going wrinkly :-(. I really struggled over Christmas, we had 3 christmas meals to go to and i was dreading them all, caused a lot of anxiety to tell you the truth and if any invites or occasions come up i just dread goin.

    I no longer like going out either, we used to go out once a week to our local club on a regular basis but i stopped going for about 12mths and everyone kept asking my husband where i was but i just couldnt face it. i am back going now but i really have to push myself and if i can get out of it i will, which i did on Friday night.

    that would be wonderful to re-train and like you say try to help someone else who is possibly suffering like you have, i hope it comes true for you.

    thank you for helping me, i feel a bit better and i am going to kick my gp's a*** tomorrow and tell him i need help and he needs to do something now, wish me luck i will let you know how i get on

    take care

    Diane

    x

  • Hi Diane

    You go get em lass because you deserve all the help you can get,keep me posted as I will be waiting in anticipation!!!!

    Best of luck :-)

    Sharon x

  • Ha ha Sharon, thank you.

    watch this space, i will let you know :-)

    Di

    x

  • Hi Sharon

    i went and it wasnt really good but i have good news, i now have an appointment with a Pain Specialist on thursday morning so i can see some light now, hope fully it will start to get brighter.

    Feel on a bit of a high actually

    xx

  • So sorry to see you going through so much. When you get into a situation of taking so many meds and trying different combinations it can be hard to unravel all that. I really believe the answer is a good pain specialist...there are many ways of managing pain...I understand right now all you want is to get pain levels under control...I have been through similar..but in a way I was lucky in that I cannot tolerate the stronger meds. I did end up having two ops which sadly were not a success. I have permanent nerve damage. Have you been to a physiotherapist..or hydrotherapy? These may help you...but you need a good gp. Sorry to be stating the obvious....I also have been doing meditation ..something that takes some time to get used to, but I really feel it helps. It can so frightening to be in such pain..and to be without answers.....but I really feel your situation can be improved with the right care....wish I had more useful advice. I take pain killers..Nurontin...and an antidepressant...the pain is always there..I have ok days...and its always a challenge..sites like this help.

  • Hi sweetpea - 123

    thanks for your reply. the problem i have is that i seem to always suffer from side effects with whatever i take. I have tried various antidepressants, various anti inflammatories, i have had endless physio, been on a 3 week pain management programme that used CBT and exercise and relaxation. I have tried amitryptline, gabapentin, naproxen and others and have recently come of the patches all becuase of side effects. Trouble is i know that i am probably partly my own worst enemy becuase i 'want to continue to work' full time and to do what i used to be able to do but on a lot of the pain killers i cant because they make me 'foggy' tired and a bit disorientated. i suppose if i didnt work it wouldnt be so bad but then again i think 'but i should be able to ' arggh i get so confused sometimes it drives me mad.

    anyway i am off to 'sort my gp' out tomorrow. i am determined to be brave and stick up for myself and not crumble as soon as i walk through the door. sometimes i think i try to be too brave and appear to be 'coping too well' when really i am not.

    i will keep you informed as to how i get on, thanks for all your advice

    tke care

    diane

    x

    ps - felt strange writing Sweetpea, that is our petname for our daughter :-)

  • Diane T....your human..and pain can strip away so much of our lives...it can take time...sometimes I think that when we resist it can make it worse. Can you talk to your boss at work..reduce hours, look at alternatives. I left my job...it was a massive decision....it took a year to make it. Yes if I could work I would....I totally understand why you would want to hold on to your job...Have you read Vidmalya Birch..wrong spelling)..she set up breath works....or John-Kabet-Zinn. I listen to his meditation cds...he has written many books about mindfulness(before it became trendy!) These are not going to take pain away, but they are , for me, at times the only thing that get s me through. I know you are at the end of your tether.....keep posting...good luck with GP.....you believe in yourself....you deserve to be treated with respect and listened to.....its about 5am.....hope I am not sounding too preachy!!

  • Hi Sweetpea 123

    Love your name btw!

    Great to see someone else banging the drum for mindfulness 😊. I was so resistant to it, didn't believe that it could help but I'm getting into Vadalyma a Burch and John Kabat Zinn too.

    Acceptance is a biggie.

    Take care

    Shirley

  • Hi Curlygirl

    i have downloaded 2 samples to my kindle of the books you recommended. I am going to give them a read, when i get chance!!!! if i can get my head round it i think it will do me the world of good. you do realise though dont you that i might be messaging to all the time to ask you to eaplin either 'how to do it or what it means' ha ha. and wow to you also for the massive retrain you mentioned below, another reason for me to message you :-) you will have to send me your rates payable on 30days :-)

    Di

    x

  • Those are positive steps Diane T - well done you 😊

    The CDS are very good with those two books - particularly the John Kabbatt Zinn.,his voice is very soothing and he guides you through the exercises in a very straightforward way.

    Good luck with that πŸ˜ƒ

    I really hope you have a good appointment on Thursday - it needs someone who will listen and look at you with fresh eyes.

    I have got my hospital appt tomorrow too, follow up consultation for the 2 ( horrible 😁 ) procedures I had, one in Nov and one in December. The Consultant doesn't know yet they didn't make any difference at all so we will be talking about 'what now??' I believe from what he said at last consultation that he doesn't have anything else to offer - I've been at the Chronic Pain Unit for just under 40 years 😳 Maybe I'll get a long service medal,or some such??!!!

    Busy week for us folk.

    Take good care,

    Shirley

    Xx

  • Hi Shirley

    Im feeling on a bit of a high at the moment, proactive steps have done me a bit of good :-)

    Thats not what you want to hear is it 'nothing else to offer'. i have been told that i have 'no surgical target' and that my problem is degenerative, oh joy. Never mind there are people worse off than us arent there.

    Hope your appointment goes well tomorrow, let me know how you get on.

    take a piccie of the medal if you get one :-)

    night night

    Diane

    x

  • Hi Sharonb45

    Go for it with the counsellor training! I started to retrain 12 years ago when I couldn't physically continue with the work I was doing. I've now got an Advanced Diploma in Humanistic Counselling, am an Accredited Member of The BACP and I'm qualified as a Counselling Supervisor. 😏 It's been a struggle in every way but I absolutely love it. Just wish my body would allow me to do more than it does but hey ho!!

    I'm 60 now and hope to continue for a long time

    Go for it!!

    Shirley

  • DianeT

    I hope you get some sense from your GP today

    Best wishes

    Shirley

  • hi Shirley

    my appointment didnt go very well really, i now have low blood pressure and i am having nose bleeds, probably due to the painkillers and not eating. he has now put me onto Tramadol to try to control the pain better and at the moment they are hitting the spot better but they make me vomit, then again i have nothing in my stomach to bring up!!!

    i did get some good news though,i was contacted by the Pain clinic at salford hospital where i went on the pain management programme and i have managed to get an appointment with a Pain Specialist on Thursday morning at 9.15am so i am on a bit of a high tonight. i can see a tiny bit of light at the end of the tunnel. hopefully it will be much brighter after i have been to see the doc on thursday, i will let you know how i get on

    thank you for thinking about me and asking how i went on

    Di

    x

  • Hi DianeT,

    You will be with the Pain Management doc as I write this - I really hope you are heard and they work out a plan to support you.

    Let us know,

    Thinking of you,

    Shirley

    πŸ’

  • Hi Shirley

    Well the meeting didn't go as well as I hoped, he explained that they 'try not to get involved" once patients have left the programmes, in other words you are on your own really!!!! He had a copy of my email which had probably been passed around all of them to get everyone's input, especially the physiologist I saw on the plan, and asked about my stomach, nothing about the pain in my back and legs, I told him everything that had happened since I finished the plan so obviously I was getting agitated and upset. He took my pulse and said that I was going at a 100 miles an hour and that my pulse was sky high ( but I didn't think to say are you surprised πŸ˜₯) he then said that my problems were probably due to anxiety and depression and that he wants me to see a councillor to which I got upset again. He said ' we need to take some steps back and try to find out the reasons , I just got more upset I didn't know what to say to him really, I tried to explain that my stomach problems had started as soon as I had started on the patches and this was why I was. Anxious and depressed but I don't think he wanted to listen to me. Anyway he is writing to my 'GP' to ask him to sort something out for me and I have to go back in 4 months. So I am nowhere further really I am now just in a queue to see another doctor and in the meantime still struggling with my stomach and my back and still not eating. When I got out I just felt that the meeting was to justify my email. I went there to try to sort my back out but there was no mention of it at all they have just seen my anxiety and my lack of appetite and my stomach and thought ' classic case of depression, pass her on to someone else, like he said TRY NOT TO GET INVOLVED AFTER THE PLAN IS OVER.

    anyway phoned the surgery and asked for an emergency prescription of tramadol and I am getting them tomorrow, 1 in the eye for the GP hey!!!!!!

    How are you,read your post about your appointment, that's not good news Hun, I am sorry.

    hope ur ok

    Xx

  • I spent 3 whole weeks on the pain management plan and did everything they asked of me including all my 'homework and exercises'. I came away with lots of knowledge most of which i have not forgotten so it was not a waste of their time or money, but i 'need to keep' the only piece of me that this pain hasn't taken away which is my job. orthopedicsurgerysandiego.com/

  • Has anyone suggested you may have a touch of gastritis due to meds and insufficient food. The pain can hit between the shoulder blades. Also there is a condition where the diaphragm can get kinked. Causing pain in the lower ribs. These are not easy to spot.

  • Hi She1

    That's interesting, I will have a look into the gastritis buts what the kink? That sound positive I can get the food and swallow it but it seems to stick in my chest/ between my shoulder blades and then I am in pain for ages. Even smoothies take me ages to get down. I found a recipe for a Acid reflex smoothie to help with the problem and it seems to be helping a tint bit but it takes me ages to get it down I literally have to force myself to drink it. It's got pineapple, banana, Greek yoghurt and pineapple juice in it and it's home made so at least I am getting a bit of fruit in me. Can you give me anymore info on the 'kink' issue please as I very often feel as if I have a really tight belt around my rib cage.

    Thanks

    Diane

  • I don't know much about it I just know you can get a kink or small fold in the diaphragm. Try looking it up and ask gp . Have you been checked for hiatus hernia? If nothing shows up on CT scan or X-ray, they should put a camera down and check for polyps. Try talking to your doc. If they think it is muscular or stress they can give Valium type drugs. Let me know how it goes. Good luck.

    She.

  • Hi She

    Thanks for coming back to me

    I have had a scan and also a duo- endoscopy but they found nothing, they were looking for cancer, they would have seen gastritis but not sure about the kink cos that's in the small intestine looked it up on google 😊 could be cos I have been taking ibuprofen for over 2 years on a regular basis prescribed by my GP might I add!!!! Not taken then since August last year tho I take omezprazole to help with acid reflux but I am always constipated I don't know what it is all I know is that I can't eat without being in pain 😞

    Thanks for replying to me

    Xx

  • Hi ,i too have morphine patches and morphine tablets when pain is so bad,i sometimetimes cant walk and very little when i can as it hurts so much we have had a shower in and bath out as i was unable to get my leg over side,twice its been so bad i could not move seriously not move i could not sit stand place one foot infront of other,now its effecting my arms at the top,i am due to go to hospital via pain clinic for a drip in my hand that releases small amounts of something every 2 hours that goes threw my bodY to ease pain i know i will not ever get rid of this but might be able to deal with pain i do know via blood tests its not the horrible word we dont like to say i hope you soon find some kind of help dianne xx

  • Hi DianeT, Have you checked whether or not you have Gastroperesis. As you've had surgery on your back, it is possible that the vagus nerve that runs along the spine has been damaged, hence your stomach problems. I have gastroparesis due to EDS and also various surgical procedures during my time. It took a time to diagnose, and there is no cure, just management, which is not easy. Like you, eating is so hard, so I make the most of instant lattes!!! I work too, and am shattered all of the time and struggling. I had to give up my career and now work in job that doesn't really satisfy, but is something I can manage to do easier, but it is tough having to take time off sick and deal with the stress from bosses. I have no social life - everything revolves around food and also by the evening, my energy is zapped! I use the patches but I cope fine, and couldn't do without them, although they don't really take the pain away, just take the edge off! I feel that you may have gastroparesis given your symptoms! It's worth checking it out. I'm about to have a PEG fitted in my stomach to help vent pressure and eventually feed via, as like you I am skin and bone. Hope this helps? Take care x

  • Hi Disc

    I have had the Monemetry test done, it wasn't very pleasant I have to say.

    The person that did it said there is a problem and that I do indeed have what looks like Achalasia. Apparently my resting pressure was very high and my peristaltic waves were out of sync!!

    I am hoping that my consultant will want to see me once he gets the report and we will be able to,plan my future care.

    I am hoping he will be able to get me sorted so I can start eating again. I am getting quite bad now and he has put me in touch with a nutrionalist who is not happy with my weight. I am having problems with my gums and gum disease which I think is due to malnutrition they have had me on a course of thiamine and vitamin b to try to boost my energy?

    I am now wearing size 6 super skinny jeans which are beginning to be loose and even size 8 clothes fall of me. I am now resorting to wearing kids clothes, not good when your middle aged is it?....

    I have also read elsewhere about the Vagus nerve so will definitely mention my back problem to him, you never know it might turn out t be relevant in my case.

    Anyway thought I would give you an update on how I am getting on, I am hope you are keeping we'll

    Take care

    Diane T

  • Hi disc

    Thanks for your comments. I ain't having further tests done on the 1st April, a Monemtry test and a PH 24 test? My consultant thinks i could have Achalasia which affects the muscles in your oesaphagus and prevents the sphincter valve from opening to let the food into your stomach he is also teSting me for GORD which is the PH24 test. Hopefully I should know more in a few weeks when I see my consultant again 😊 I looked up gastroparesis but I am not able to eat at all so I don't think it is that but I will certainly mention it to him when i see him, thank you so much for your help x

  • Hi Diane T, with gastroparesis sometimes you aren't able to eat at all I certainly can't eat or drink anything without being in agony. I am having a PEG fitted in order to try and ease the pain etc, and possibly get nutrition. I have EDS (Ehlers Danlos Syndrome) which causes so much pain around the body so get checked out for it! I get frustrated with dieticians as they don;t really understand the issue with not being able to eat, and talk to you like you don't know the calorific value of stuff - we do, we just can't consume the stuff! Like you, I am 43 and shop in the kid's section, as size ^ stuff is too big, I buy six 6 and shrink them in the wash in order to fit. I work in a school and wear lots of layers so I don;t look like I have an eating disorder! Take care and keep being your own advocate!!! (which is hard, I know) x

  • I recently had ALIF surgery after suffering for years and I felt 100% better the same day after waking up in the recovery room. I did everything to avoid surgery but not worked after time. Find yourself a great surgeon and do it you won't regret it. Right now I sore and the nerve's are a little unruly but it gets better everyday.

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