Can't take much more

Hi guys first post here ,

I'm riddled with pain from a recent 3 level adcf spine surgery , also been recently diagnosed with inflammatory poly arthritis which is in my knees wrists hips and all fingers and also spine as well as the spine pain from op, I'm on gabapentin codeine oramorph paracetomla and a anti inflammatory , it's been like this for two years I also lost my mum 1 year ago who I was caring for in this condition. I have no friends I don't work as too much pain my family have only two brothers who don't understand they just say things will get better. I had terrible time I. Spine surgery and my heart stopped in theatre , I'm really struggling with the pain I can't even make a cup of tea without agonising pain in spine and joints. I'm only 44 and I feel like giving up I have nothing to look forward to just more years like this. I seen a rheumatologist once he gave me injection in him that was in January now I have been chasing up another appointment to see him which is now in august. I cry every day I don't sleep I have battles with Sep and pop always having to film out forms . I have no partner and no money problems and a big mortgage I never have any good day and I've stopped laughing and smiling which is so sad

23 Replies

  • This is the beauty of these groups, always someone to lend an ear and give advise. Pain is horrible! I would maybe suggest speaking to your doctor and see if there is any local groups you could go to. I would also say that you sound very low in mood xx

  • So sorry to hear of all you have been through and are still suffering.

    It seems to me that you could do with someone to care for / help you at the moment like you cared for your Mum. But it's not going to happen is it? I remember being in this situation. I cared for my Mum for years. I had no one to care for me though. I had a really bad time about a year after she died also. Not surgery, but ill and just not knowing what I had. I recall losing my DLA because I wasn't well enough to fill out forms and had no one to help me. This was before I was diagnosed with an Underactive Thyroid. Things aren't as bad for me now. Still have ill heath and pain. Excess weight was a big problem. Because of the undiagnosed, untreated Hypothyroidism I had gained 5 stone. Two years ago I lost a stone in a few days when I caught a gastric bug. Allthough it took a while to recover it is so helpful to be that stone lighter now.

    You have recently had one traumatic event after another without any family support or carers or friends to help. I think you are very brave.

    You are still in the early days of grieving, following the loss of your Precious Mum. You have multiple medical conditions and chronic severe pain. You've had spine surgery during which you suffered Cardiac Arrest. You need time to rest now and to recover. Your physical pain is massive and stress from bad, unhelpful attitudes of others (who should know better) is a stress you could do without just now.

    Please don't give up. You can get through this.

    Just remind yourself that you are Precious. And need time to recover. Everything seems just too much just now, I know.

    I hope you can manage to get your pain under control and get some rest.

    I believe that you will smile again one day and laugh.

    Just concentrate on you, letting go of any negative thoughts of others who don't understand and don't care.

    You are beautiful and brave and I admire you.

    God Bless




  • Thanks guys reading the replies you have left on my post is more important to me than you know, just to see a couple of people whom I don't know from Adam go out of their way to spend time to write back has lifted my spirit a little. It is so hard to get through this it's like walking through thick wet black tar , I am so desperate and lonely and sad so tired and weak from so much stress it never ends , relentless piercing pain with every move I make , constant worry for my mind my thoughts racing and chasing each other ,chaotic agonising life that I can't see I will ever be free from. I miss my mum intensely it physically hurts me in my heart and to talk to her would help me so much through what I am going through instead silence and I stand and weep her headstone al I have left of my precious mum . My god this life is so cruel to one person so much pain and stress it's unbearable. Love to you who cared enough to reply to my lost soul xxxx

  • Hello again J. Do you know, my internet was on the blink this morning and it's only now I'm seeing your reply.

    You have actually had two bereavements as you have suffered both the loss of your lovely Mum AND your occupation, as you cared for her. Whilst you were so busy caring for her, you had some distraction from your own pain. You were probably so exhausted (I was) that you slept a bit better than you are able to sleep now.

    You and your Mum's relationship sounds a bit like mine. We were so very close, -mum and daughter, but more like sisters sometimes. Very close, best friends. And towards the end she became more like my dependant child, so vulnerable and in need of me. She died 16 years ago. But thinking of you and your Mum and remembering mine has almost brought a tear to my eye!

    Your Mum was so blessed to have you.

    You are bound to miss her. You were so very close.

    If you ever want to talk about her, share a funny story, or tell me a bit of what she was like - then please reply or send private message anytime. I will always get back to you.

    Remember, though, whilst still in the early days of your grief you had a serious operation. That in itself , without the added complication of cardiac arrest in theatre, is a very traumatic ordeal to go through and will take some considerable time to recover from. All we can do sometimes is take things day by day, hour by hour even.

    I am 63 now so was a few years older than you when mum died. You lost her so young. So sorry for your loss. I too had lost my job to ill health and still wasn't diagnosed when mum died.

    I hope your pain eases a little more with each new day.

    Keep in touch.


    Mary x 🐥

  • How do you mange to go to the toilet after taking all those pain killers, after having L4/L5 spinal reduction the put me on high codine pain killers and could not go to the toilet for over a week and I was not eating very much and when I did manage to go on the toilet it tore my rectum and forced my piles out of my bum, stopped taking the pain killers and after 10 weeks my bum is something nearly that I can wipe without excuciating pain,

    Good luck in finding a cure for your problems.

  • Hi rick1945.

    I would like to pass a law which enforces all Doctors who prescribe painkillers ESPECIALLY cocodamol and morphine to presribe a stool softener - ie - Lactulose medicine at the same time. They know codeine and morphine cause constipation. The best thing to do now if you don't want to see GP (which you should really) is to take Lactulose every day. Drink lots of water or diluted drinks if you don't like water. - Decaf tea / coffee, squash. You could also take a Fybogel every evening adding a little fresh orange juice to stop them from going thick before you can drink them.

    Use Germaloids cream (if you haven't already). I think that's about the best one.

    Keep taking the Lactulose and Fybogels for at least a week. Then take one or the other, every day after you get regular bowel movements again. If you don't eat a lot of fresh fruit try to increase to 3 pieces starting with a Banana each morning if you like them.

    Sorry if giving advice you didn't ask for and don't need. Please forgive me.


  • Hi Mary-intussuception,

    I take the Lactulose, and the Fybogel and over the counter Cafig and laxative pills, I also eat plenty of fruit and drink plenty of water ( in hospital all they said was ' you must drink plenty of water' ) I was like a bloody fish,

    But I think along with the trapped sciatic nerves I think they have trapped some nerves that control my lower bowels,I have to see my GP later this week and will tell him what I think they have wrong and see what he say's.


  • Why are you taking over the counter laxatives?

    Laxatives can cause all sorts of problems including dehydration. Dehydration is bad for general health and constipaton. Bowels need water to function.

    Also laxatives can move stomach and small intestine contents too quickly and therefore essential nutrients could be at risk of being lost before being absorbed.

    Over the counter laxatives are only intended as a 'one' off use in otherwise healthy people. Should never be used as a regular treatment for constipation caused by codeine etc.

    Lactulose and Fybogel can be increased.

  • No, what I was trying to say is I am taking all of these laxatives and things are still not moving properly, this is why I think the surgery on my spine has damaged nerves that control my lower bowels, I drink enough liquids and water to sink the Titanic in, that keeps me running to the toilet all night peeing, proving I am drinking enough, plus all the fruit I am eating,

    Before the operation I used to have a small ( nearly ripe ) orange every night, this single little orange was the best laxative I have ever had to keep me regular, now all this other prescribed hardly works making me think damaged spinal nerves in the operation I had done.

  • If they are not working then do you think it might be a good idea to cut down on them?

    Have you ever been refered to a Colorectal Specialist for the bowel dysfunction? Maybe you need investigations to see if you have any bowel /rectal conditions / hernias?

    You may need Barium Enema xrays or a Defecating Proctogram or both. I suppose you have had lots of blood tests?

    I have numerous bowel conditions which have caused Obstructive Defecation. I don't use any laxatives or stool softener or Fybogels. When muscles are weak, best to do without them if you can get bowels going again and keep them moving daily.

    Stress and anxiety can also stop bowel functioning. Pain causes stress etc. Vicious circle. I rest after getting up in the morning and relax. Have water , banana and decaf tea. Few hours later I have porridge. Try to eat root veg, well cooked at lunch time and peas. Very little meat. Also , when I eat two more prices of fruit each day and remember to drink water and decaf tea this helps to keep me ok.

    Have you ever considered making a self- referal to the Continence Adviser /Nurse? Might be worth a try.

    Hope you get some improvement on the pain issue and bodily functions soon.



    Does your Neurologist or Orthopaedic Surgeon or whoever did your surgery know about this?

  • No,

    This has only started since I had the spinal reduction done, regular as clock work before, so it's got to be down to the operation, the same as my trapped sciatic nerves.

  • So isn't this why you need to tell someone?

    You weren't warned that this could happen as a side effect of having the operation were you? So this has to be reported. As something's not right.

    This needs attention. And some resolution.

  • Yes told him about it two weeks ago as yesterday, he was not bothered.

  • You have made a goodmove by coming on to this forum. A trouble shared is a trouble halved. We all need each other. Do you have a neighbour who is helpful? Anything that can distract you from your pain, and rest your mind. Do you like reading? Do you have a garden, tell us about your circumstances and how you manage all the jobs around the house. Do keep in touch we want to help. Iris x

  • My lovely wife does her best for me, I do try and help when I can but after five minutes on my feet and I am in so much pain I have to lay down on the floor till it eases, I do read but lack concentration due to the pain, definitely cannot do anything in our garden and can only drive my car for about five minutes before I have to get out and stand for a while till the sciatic pain subsides a bit.

  • My goodness rick I never had such problems with going to toilet I do eat a very good diet I'm vegetarian and eat a lot of fruit and vegetables and lentil based diet maybe this helps? So with the jobs around the house I focus on one job a day and it takes me so long even having a shower for example takes me well over 45 mins and the getting dried and dressed so much longer ! Yes I read a lot and I sit in my garden and potter around . Both my neighbours are elderly but I do speak to them when they are out and about . I think it's such a horrible thing when no one can see your pain and how I have a metal cage in my back and the rheumatoid arthritis all these are invisible to the people out there even my doctor and specialists it gets me so angry because I know they are trained and specialist in their field but I don't know how they can ever learn about the individual pain someone is in it can't be taught and they seem to think I'm going mad or it's all in my head , early on in this journey before they did my scan a doctor actually said to me that pain can all be in the head , then they did my MRI scan and saw that 2 disc in my neck had prolapse and pressing on several nerves in my back causing numbness pins and needles down my arms which is still here even post op!! My fingers lock all the time and I have trigger fingers on several fingers this is just another thing I'm au against everyday! So today is my hoovering day and I will do this in stages throughout the day it will take me all day to hoover my small home . Thanks guys for replies xxx

  • We sound a right pair don't we,

    It's a shame we can't just plug a wire from us into these doctors and let them feel what we are feeling and then see what they would do about it.

  • You sound as if you are in terrible pain not only physically but mentally. When you are at rock bottom with everything there is only one way and that is up. I have been there. You have made the first step up by joining this group. Well done! A really bad spell led me to join very recently. I know it sounds harsh but you have to keep helping yourself for others to help you. Perhaps the friendly ear of a counsellor would help and as Ez82 suggests join some group with similar interests. Distraction is a good painkiller. There is a saying 'Laugh and the whole world laughs with you, cry, and you cry alone.' I try to remember this, not always successfully.

    Now it is time for you to climb up to the next step. Let us know how you get on. We all look forward to hearing from you.

  • Hi Rosa-Marylin,

    I know what you are saying but after 22 years of pain since my accident and then to be told now I am an old man that this spinal reduction op would make me a new man and get me back walking miles like I used to do only to end up in ten times as much pain as I had before the operation does make you want to not trust doctors any more or listen to other people saying it will be alright in a couple of weeks time, it's just the constant pain all day and night just wears you down.

  • Persistent pain can be and is all consuming and wearing. You do have to give any operation time but if you think your operation was not the success you were led to expect why not contact the patient group at the hospital where the op took place perhaps they could advise you how to proceed. Doing something postitive might help.

    I was in the same place as you 25 years ago after being thrown over a car as a pedestrian breaking both shoulders several parts of pelvis and Spurs of spine, after months of unbearable pain was referred to counsellor/psychologist who diagnosed that I hadn't grieved properly for my father which had led to depression and not being able to cope with pain. It wasn't a magic cure but did enable me to cope with the pain . I don't always cope - a few down days led me to join this group.

  • Hi,

    I have been back to the surgeon after 17 weeks since op and all he said was it is nothing to do with what we have done, I told him it was not there till you had done the op,

    He was not bothered one bit, all he said was, get your doctor to get you an appointment with your local pain clinic, local fifty mile round trip, as if us pensioners are made of money.

  • Hi would just like to say that I am thinking about you and sending love.

    Please get some help, perhaps a counsellor will be of great benefit too you. You are not alone we are all here anytime of the day or night if you need someone to talk too. Xx

  • I an sorry to hear you are in so much pain mate, keep chasing the buggers up, tell them you are Polish or Romanian, they would have you in hospital the next day spending £1000's on you.

    Good luck mate, hope you get sorted very soon.

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