Back pain getting worse, already on high level painkillers, who do I turn to next?

Posted , 9 users are following.

10 years ago I slipped on a stone floor and had a horse rear up whilst riding and fell back landing on me. Since I have had further falls from horses and trees and further injuries. 8 years ago after pestering I was sent for an mri scan which revealed prolapsed discs 4 in total. I have seen professionals on and off for the last 10 years as it is gradually getting worse. The last 18 months are really bad and getting worse day by day. I have had a recent mri which shows the discs that were prolapsed before have got worse. I have been for 2 6 week blocks of physio which only seems to make it worse, I have been to hydrotherapy which does not alter it really, I am on dihydrocodeine, amitryptyline, gabapentin, naproxen, paracetamol, omeprazole.I have been referred to the pain clinic for further treatment to help ease the pain, which I have to wait 3 months for the consultant appointment, bearing in mind I have just waited 6 months to see the nurse. They are hoping that they can give me injections. I have recently paid to see a chiropractor which has said (I never told him what the mri showed to see if he came up with the same) that 4 of my discs have slipped out of place and are now pressing on my spinal cord 3 in the lower one in the upper back (which requires the discs that mri showed) we had 2 sessions which left me unable to walk 30 minutes afterwards, he has now said that he is not willing to do any more sessions as the discs had moved back in place after the 1st session and had possibly moved further than before the 1st time, he says he does not feel it is safe to do any further manipulation and I should contact the pain clinic asap to get pain relief and a plan of treatment. I have rang them and they say I have to wait until the app in 3 months.

Where can I go? Or what can I do to get a little pain relief? I'm not asking to be pain free just a little bit eased. I need another plan as I cannot cope like this for 3 months. If anyone can help even teeny bit I would be grateful of any advice 😀

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  • Posted

    You will get helpful replies for sure!

    Coming regularly to here the Forums we learn and we become able to give some help now and then.

    Hope you will get the answer you need.

    I am sure you will.

    Keep your hope always alive!

    Take care🌺

  • Posted

    Have you talked to a orthopedic doctor about surgery.
    • Posted

      I was told 4 years ago that I pass all the entries for surgery apart from my age, they are not willing to operate at such a young age, if this has changed or not I am unsure and awaiting consultant app.
  • Posted

    Oh dear Rosie you are in bad state. I don't know what to say to you. I have 3 and I have been told that its dangerous to operate. I am waiting for the pain clinc

    Months go by mistakes are made and feel like going to a & e cricket I knows what to do myself by now.

    You are on a lot of meds what does yr doctor say? Take it from me sometimes an operation is offered and you are worse than before I am only a small dose of lyrics I could take more than I do but I don't want to go around like a zombie if I think I was you I would start again with meds. Do they not affect you?

    They all seem to say exercise. The NHS recommend exercise. If you find their page.one of the deasd easy exercises is. Lie on your back with knees up. A and then bring your knees to your chest. If you went to yo yoga its more of less the same exercises. Stretching your back. When I go to Valencia often I sit on the park wall and put my head down to my knees - its all about stretching your back although itg doesn't take me much further I admit but its just a relief.

  • Posted

    Dear Rosie, you need to go a neurologist,besides pain killers are other options, but you need to do a research . Hope you find a relief to your pain.
  • Posted

    I am absolutely stunned at the tales of dispair & what in my eyes are horrendous treatment plans.  My heart goes out to you all as a fellow sufferer, but I also feel extremely angry at the way some of you have been treated.  I'm probably going to sound arrogant to some of you, but honestly, I don't mean to.  So here goes:

    Take ownership, of your bodies, your feelings and your pain.  Don't allow doctors or specialists to tell you how you are feeling.  They are there to work on your symptoms not the symptoms they think you should have.  Self empowerment is a wonderful thing and can help you mentally.

    Aim Higher, don't let the receptionists dictate when you should see your specialists or pain clinics.  There are rules and regulations as to how long you should wait, if you think you are waiting to long hit your search engine and see what the maximum waiting times are as set by your health authority, then cross reference it with the government targets.  You'll be surprised at what the differences can be.  Even if they are similar, getting in touch with the hospital directors office and putting your case forward can reap rewards.

    Don't be afraid to let it be known (in a respectful manner) that if they make an error you will take it further.  Hospitals react to the phrases "I'm going to the BMA about this" or "I'm going to take advice from PALs".  It doesn't matter what you think of these organisations it's how the hospital views them that counts.

    That's my rant out of the way!!!

    I've had a Medtronic Stim since 1989 with one upgrade on the way, when I had mine done there was just a 10 minute chat and some thinking time to make sure I was suitable, that was it.  However, prior to that I had a TENs machine, which after a little fiddling around managed to block some of the pain so the stim was the next natural step.  The thing with a Stim is that it's not there to cure you it's there to help you cope and it's main function is to give you something other than the pain to concentrate on and the brain will recognise an electrical signal above other signals.  I change my settings regularly and I also turn it off regularly as I believe that the brain gets used of the signals and by doing this it keeps it fresh.  Mine is also very directional, I can change my body position to give me either a weaker or stronger signal and I use that to my advantage although, when I get it wrong it can be quite comical!!!!  On the whole, I feel the Stim does help in line with the correct medication.  Which brings me to you Rosie.... What the exclaim Flipping heck is your GP doing??  When you get to the Pain Clinic the very first thing I'd do is ask for a drugs review.  I can't see how your GP can monitor your symptoms with that cocktail, I won't pull my punches here.... You are going to have problems coming off some of those.  For instance, amitryptyline (I have history with this drug) is an old adictive treatment for depression and does not have a good press, mixed with something like Gabapentin (a drug I use now) isn't a good mix.  I'm no doctor, but take into account my condition and this is my drug regime on a daily basis - 70mg Oxicodine slow release twice a day 600mg Gabapentin three times a day - That's it!  I have some 5mg Oxicodine normal release for break through pain and Diazapam if I'm having problems sleeping, nowhere near the quantity of your script.  Out of interest sake, has your GP said anything about "Drug Rotation"?  How long have you been on this script?

    Finally Physio & Chriopractors, my wife has a friend who is a retired sports chriopractor and he vehemently refused to treat me as he said it was too dangerous and my Physio has only taught me about posture and the ways of getting out of bed and chairs.  The only 'treatment' she did was acupuncture which did work, but in a limited fashion.

    In conclusion, I don't think any harm would come to those of you who don't have Stims if you spent £25 on a TENs machine and see if it helps, but check with your doctors first.  The other thing is Push Push Push, you may have a good relationships with your teams but you mustn't let them off the hook.  Empower yourselves.

    • Posted

      So let me ask you this!! You put a stim in and ever time you put it on the old incision spot swells uncontrollably giving a severe burning pain!! You call your doctor daily to complain! If you put on and seeks you could no longer stand or sit due to the pain caused by the swelling!! Finally after eight weeks it swells so bad it bursts and you end up in er!! Then transferred to top hospital for a week to get rid of infection!! After removal of stim your pain level has went up by 1000%!! You try another stim wich makes it feel like the first one is still there!! You have removed and get mri only to be told nothing more surgicly can be done!! Want to try hf10 nevro new stim!! I agree but want answers on first stim but no doctor will give!! I almost died from this infection!! They have me on 3-60 mg OxyContin a day-2-15 mg oxycodone pills every two hours for total of 12 per day 4-350mg soma's per day!! And I still suffer no matter what I do!! What do you think happened?? I say it was burning me every time I turned it on!! But there are no burns on my spinal cord so where and what did it burn? And if not a burn what was it?? They all seem more concerned with protecting the first doctor(ass) who did it!! I'm so confused and depressed now that it's not funny!! Any suggestions???
    • Posted

      Hiya Popeye,

      Thankyou for your reply.

      I have thought about being stricter with the Dr's and being more demanding from them. The thing what makes me put off the idea is that the last time I did in 2008, I went and sat/stood/paced in the waiting room for 2 days and said to them I would wait for a cancellation there as their excuse over the phone was that they only know about cancellations when the appointment time comes so they cannot possibly ring me and me get there in time. To cut a long story short I was told I was discharged from the pain clinic due to me waiting there for 2 days. In that time however I was never rude or disrespectful to staff or patients. So this time I have chosen to obey them. Although the PALS may work this time.

      As for the cocktail I am on, I have asked if I can take a simple tablet to give me the same relief but all they say is if I want to lower the amount of painkillers I take I have to move onto the fentanyl slow release patches, which is what made me sick last time, and I don't want to be on any stronger drugs, they reduced my amitryptyline as I had a twitch but told me to up my gabapentin. I hate the side effects and every time anyone asks me what I hope to achieve my answer is to lower the amount of drugs I am taking and find an alternative solution that has less side effects. I am sure if I jumped up and down I would rattle like a pill bottle.

      I do have the tens on and yes it does make my brain concentrate on something else but when I am having a bad day it just adds to the pain but I think that is mainly because on bad days my muscles in my back have spasms almost like cramp so I think this is why tens is not helping much but the pain clinic nurse told me to use it on the same burst and just up the level. So I will try different bursts too and see if that helps.

      My gp does seem pretty useless at the minute and he knocks me down when I go and ask if there is something else I can do and he just answers with take more tablets. I feel like a dog chasing it's tail sometimes.

      My new hope is I have found a consultant that works at Sheffield hallam shire and private so I have requested a call back from them to discuss a consultation.

      Thanks all, and hope you are all having relatively low pain day. 😉

    • Posted

      Rosie can I ask if anyone has mentioned the new hf10 nevro system to you at all?? That's what they are trying to convince me to try and after two failed Medtronic stims I am pretty scared about this especially after what the first stim did to me!! They can't even give me an answer on what caused the swelling and infection!! Never mind the fact the pain I feel all day 24/7 is crippling me!!
    • Posted

      Hiya Fred,

      Nope, not at all, I have never heard of the stim before erecting comments on here 😔

    • Posted

      It just got approved by the fda over here!! It's that new!! They say you feel no tingling or electric current at all!! I am praying that it works!! The way I am right now I don't know if I'll be able to walk my daughter down the aisle or even do father /daughter dance at her spelt ember wedding!! The reasons I'm willing to try it is for that reason!! I'm worried about more pain wich I will not be able to handle!! As is now I live one day at a time!! And as you know that's not pleasant!!i wish it would just go away!! Or they could just numb it so I no longer feel it!!
    • Posted

      We're in the UK Fred, so it might not be available over here yet. It sounds brilliant, if you can't even feel it working.

      I hope you decide to go for it, though I can understand your fear after what happened with the Medtronic.

      You'll find the strength somehow with plenty of rest beforehand to walk your daughter down th aisle, you've gone through so much, bless you.x.

    • Posted

      I just finished the test for the Nevro. It was great. I'm due to have the permanent implanted in about 3 weeks.   Good luck!
    • Posted

      Hi Rosie, sorry it's taken so long to get back to you been a bit busy. Buy discharging you because you were waiting around for 2 days and not for any medical Barry reason they actually broken the role of ethics and the law they aren't allowed to do this.. if it were me in your shoes I would report them to the BMA write a letter to the department manager saying that you were intending to take further advice from PALS.

      If you can I would approach your rather pompous doctor and ask him to see if he could refer you to the Nottingham Queen's Medical Centre pain clinic. The specialist you need is Basu, he and his team are the only ones I trust me with my back and my legs his team includes specialist nurses that you can contact leave a message and they will get back to you. They will also set you up with a consultant pharmacist who will sort your tablet resume out in ways that you would have never thought. This is much cheaper than going Private and once you get into the regime of seeing in a couple of times a year you will manage all you will learn to manage.

      Once again I hope this helps you I feel for you try and have as many pain managed days as you can.

    • Posted

      Hi Marie04822, can I just ask if you live in UK? I've been reading all these comments on stims and I've never even heard of them! Thanks, Linda
    • Posted

      Hi Linda,

      Me neither, I never knew they existed. Lol, shows how far behind the UK is.

    • Posted

      I had a spinal stimulator trial over 20 years ago, and I'm in the uk.

      I was only the pain clinics that did them, but they were around, :-)

    • Posted

      Hi Linda, stims or Spinal Cord Stimulators have been in the UK since the mid 80's. In it's most basic form it's a posh TEN's machine sending an electrical signal around targeted areas of the body hopefully giving some pain relief.

      My first stim was implanted in 1989 and upgraded in 2000. From my point of view I haven't had any major problems with it except for 1 connector needing to be replaced. I haven't had issues with operation sites giving me pain and I definitely haven't had any problems with the stim 'blowing up'. In fact, this site is the only place I've heard of happening, which is slightly worrying. Especially when you take into account that I've been going to official bi-annual check ups since the early 90's, you'd think that I'd have come across it before.

      Best way of finding out about a Stim is to get a referral to a Pain Clinic.... However, this is where I've come across huge variations between different clinics which has led me to believe that it's extremely worthwhile researching where the best clinics are. From personal experience I can vouch for the fact that it's definitely worth travelling to get the best one. I travel 50 miles to Nottingham Queens Medical Centre, which is known as one of the best in the country along with Leeds. It's the only way you'll get an informed and unbiased opinion about if a stim is for you.

      Hope this helps

    • Posted

      No!  I live in the US.  My understanding is the Nevro is fairly new and you do not have any "vibration" with it. I know when I had the test and did not feel anything uncomfortable. It helped my pain by50-70%. Stems have been around for several years tho.  Marie
    • Posted

      Hi Popeye,

      thank you for your reply, you have given me something to think about.

      linda

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