12 months on....no joy

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Severe back pain and living a normal life

Posted 11 months ago

Hi please read this. I know its a long one - I just need a bit of help/advice xxx

I am 39, 2 children at home and sick from work. Ive had back problems since I was 21, its gradually got worse - short story - had an MRI scan when I was about 34 told I had DDD but was told that this was normal and nothing would be done. Ive since moved area and the pain and symptoms have got much worse. From October until now I have increased my medication to 2 x 10mg of zomorph, 150mg of Venloflaxine (anxiety and depression) 2×300mg of gabapentin 3 times a day 1x500mg of naproxen twice a day, 2x30mg of dihydrocodeine 4 times a day, at bedtime 35mg of Amytriptaline at bedtime. I still have pain had an MRI scan and an xray. The xray showed osteoarthritis in L5/S1 and MRI scan showed a bulge with slight pressing on my nerves.

I've had a PIP assessment and have been awarded standard rate. Even though I cant walk very fast and I'm constantly in pain. But because I will do it and wont get people to always go for me this is deemed as me being able to do it!!!

I have been off work since April - i tried to stay in work as long as I could but the pain got too bad and i wasnt taking the dihydrocodeine as they make me drowsy and I had already started getting my words muddled - not great when you work in a call centre!!! I get sick pay of £320 a month.

Roday I had an appointment with the orthopaedic specialists and he was running over an hour behind - I was in there for 15 minutes. He asked me my age, if i lived in a house/bungalow, who i lived with, if i work and how long I've been off sick. He did the normal raise this push my hand etc... then said he wont operate and will see me in 3 months. I asked how i was in so much pain even with the medication - which makes me unable to run my household. He then asked what I was taking - surely this is all in my notes. So I told him and he said well the disc bulge is slightly different as you were lay down. He has said he will get in touch with the xray dept who will do a steriod injection. But this can take 8 weeks - Iknow I may sound really negative but i came away feeling like he never gave me the time to find out how i live etc..... i asked what I'm supposed to do about work etc but he said that he'd write a letter to my GP and I would get a copy. I said that I just wanted to get back to normal life or at least get rid of all this pain he brushed me off by saying we'll see what the injection does I don't want to put you under the knife.

I really dont know what to do, I feel like I'm in limbo at least another 2 months off work??

I have no support network, my boyfriend lives 15 miles away and mum and dad live in turkey.

So, this was me nearly 12 months ago.....

2 injections later and I'm still the same. Not on all the medication as it didnt really work anyway. I have a new job - less stressful and no threat of being sacked due to hitting sickness target, but longer hours.

I take dyhydracodeine in work when i need to. Naproxen twice a day amytriptaline when i cant sleep and now have restless leg syndrome - which is horrendous and has got progressively worse. I need to go see the consultant again and see a physiotherapist but tbh it doesnt help. I try to keep moving but still cant do simple tasks and feel drained at the end of every day. The depression is getting slowly worse. I just want to be back to normal. I am in constant pain all day every day and the tablets - if taken properly at the weekebd totally wipe me out. I get standard pip which pays for a cleaner and my ironing to be done. And my son is still a great help.

Even though i am back at work i am in more pain but i was getting less and less money and bills were mounting up so i have to be in pain but the bills get paid...... what do i do?

Thanks

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10 Replies

  • Posted

    Get referred to a pain clinic ask about neuromodulation I u get passed the 1st stage that's the pain Doctor. U will have to stay in hospital accommodation for the 2 Week assessment 4 day 3 days. It will be hard for u has u got young kids. If u are successful u will have a operation. They put a disc in powered by a battery it breaks up the pain signals. I am due to have the assessment in October. I have established caudal equine I Was left in full compression. I suffer severe nevere damage. I have been left disabled I have a colostomy and a urostmoystoma wee bag. I at to have my bladder removed a few months later I have had 7 major operation. I because of the hospital mistakes. The paid damages. I have server pain every day. Worse the the bad backs in the past. As I have been told the urgent surgery I had was to relieve the compression. Not the pain. I have one of the worst cauda equine syndrome . I the world. The money was a very large amount but I had a good job a good life style. Now I have been left like this. My last mri scan showed I had disc bulging in 5 places I have osteoarthritis. My whole back is a wreck. The pain I live with it don't take much only progabline 300 twice a day highest dose oxycontine 30mg twice a day in the evening 125 mg notripiline pass night tablet tramzone. Plus one other. So I under stand ur life. I am 58 my life changed when I was 50. Don't give in

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    • Posted

      Jeez Keith - makes my issues look like a breeze

      I will keep fighting I'm 41 in Aug and shouldnt be like this at my age. Luckily i dont suffer with any bowel issues but im findinf i have a few accidents every few months bladder wise.

      I work but feel like a wreck at the end of the day and all i want to do at the weekend is rest

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  • Posted

    Hi

    Well it sounds like you need a second opinion did you know that you can go to any hospital in the UK so if you find one that has a better reputation you can get your gp to send you there to see a consultant, I have had back pain for the last 15+ yrs and had all the usual physio, acupuncture , mri, X-Ray etc with no avail and put on morphine patches the pain over the last 2 yrs got worse so had 2 x cortisone injections no help then I had 2 x epidural blocks which helped a little, then had 2 x nerve deviations on the left side with a little relief but still constant pain my meds are 40mg morphine twice a day, 150 pregabalin in the morning and 200 pregabalin at night with anti depressants as a nerve blocker and muscle relaxant 400mg nurofen twice a day, I then saw a different consultant who got me to have a spect scan which showed up my problem so surgery was booked for a sacroilic facet fusion on the left side, I am currently 15 weeks post surgery and doing ok except no need to learn how to walk better as before I was dragging my leg and limping so lots of physio and exercise so now I just cross my fingers that I can get back to work and cope better with everyday life I know my pain will never be gone but 60 percent is better than none. I like you have had to copy and carry on with life whilst being in constant pain and having ppl not understand what your going through

    So chin up and keep pushing them or ask your gp to refer you to a different hospital, where do you currently live ?? As there are some good hospitals in Surrey

    Wish you all the best

    Kathy

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  • Posted

    Hi sandy, I too am struggling. I did have surgery 8 weeks ago because I was nearly completely immobile, Ide only walk to go to the toilet and didbt always make it. I'm 25 so understabd being annoyed that I shouldn't be feeling this so young. The pain is coming back now, and so hoping it's a blip. My husband works full time, I am at home with 3 young children ages 3-7! I'm screaming for help, but I'm getting nowhere, we've had to pay for my youngest to go to playgroup 3 mornings a week which is leaving a hole in our pocket. I hope you get some answers, keep pressing them
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    • Posted

      Awww hun i feel for you. I had back problems from 21 after my first but its just got worse and worse.

      Hope it is a blip and it only gets better from now xxx

      The consultant just refuses to perform surgery even thoufh i have had a dianosis of herniated disc for 8 years 😢

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    • Posted

      Unfortunately it is always a last resort because it doesn't always work and it is invasive with a lot of risks involved.

      I started having problems after my first too, I was 18 when it started. It's hard isn't it being in so much pain and generally people don't understand or even believe that you're in the amount of pain you say you're in.

      I'm hoping to find help somewhere, anywhere.

      Stay strong, if you believe surgery is your last and only option then request another consultant. Also look into prolatherapy, it's meant to be amazing but my condition was too bad for it to be effective enough for me.

      Have you tried a private consultant? They can refer you for NHS treatment and they can just discuss treatment options and history with you.

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  • Posted

    Hi. I am 44 and could have wrote your post almost word for word! I have now been like this for 2 half years. I long for the day I can walk the 5 minute walk to take the kids to the park, sit or stand for 20 minutes watching them and then do the 5 minute walk home. Not a lot to ask but it's not happening right now. I 100% understand where you are coming from and sympathise for you.

    I'm not sure if you can find a post I made and have had lots of replies to it. The reason being, I have picked up some really helpful ideas and things I want to try that I never knew about. I thought I had exhausted everything but maybe not! It's worth a read :-)

    Here's hoping for a good day when I wake in the morning as I just never know which level I'm going to be at.

    Please try and keep your chin up and keep on this site it's helped my mental state no end. So thanks to everyone for that.

    Take care and good luck.

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  • Posted

    Hi Sandie-pants.  I was in the same situation as you a year ago, in so much pain, walking with a stick having to stop start and sit down all the time, yet that didn't ease the pain either.  I use to go to work take too many tablets for the pain and go home to lay on my bed and rock myself stupid to get rid of the pain.  Luckily I had a great consultant and after so many injections and nerve blocks had a L4,L5,S1 fusion and decompression.  My pain was terrible in my back but I also had terrible pain down my legs and my toes were numb.  My consultant did tell me that if I just had the back pain they would not operate.  I had my operation September 2015 and now 9 months later I have no back pain (unless I over do it).  He initially told me that he would only be able to get rid of 40% of the back pain, I still went for the operation as I thought this was better than the 100% constant pain I was in!  I have a different chair in work whereby there I sit on it like its backwards and this is a great help as there is no weight bearing on my thighs.  My one leg still gets pain and terrible restless leg in the night but this is nothing compared to the pain I was in.  Get a second opinion and sometimes you have to be straight with the consultant and tell them what you want.  Tell them you've had enough of living this way in total pain day and night.  Hope you find some relief x
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    • Posted

      Thanks for your reply.

      I'm off to see my doctor tonight as i really need this sorting. I love my job but the pain is getting unbearable and sleeping all the time when I'm home is not really any kind of quality of life. Especially for my lads.

      Fingers crossed i get somewhere. Physiotherapy is having to be cancelled due to my level of pain but i really do try to carry on as much as i can. Like i say fingers crossed. Hopefully your painfree life will continue xxx

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  • Posted

    Hi

    So sympathise with you, i have been in constant pain since nov, i had mri & it shows hiernated disc & arthritis of my lower back. I have sciatica pretty much constantly. I had epidural steriod injection on Saturday but had no relief infact its worse now!

    I also have almost constant indigestion & feeling of nausea, is this something you get too??

    Would appreciate any advice/tips x

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