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

Posted , 9 users are following.

rosie50281
rosie50281

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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  • fred92666
    fred92666 rosie50281

    Posted

    I had a Medtronic stim put in!! Everytjme turned on got burning pain and it would swell so bad I couldn't move!! Complained to Doctor for eight weeks only to have him say your body is trying to reject it!! On the right week it exploded and j ended up in hospital for a week while they treated infection or burn as I think it was!! Three years later and my doc does mri and says you have another bulging disc but nothing we should do and that there is no scar from burn on mri!! Now they have me in crippling pain and also now really depressed!! Now they want to put in new nevro hf10 stim!! I have no choice and I mean no choice but to put in!! The pain controls my entire life of wich I have no life due to pain!! Can't have a sex life!! Can't go to movie theater or b-day party without leaving early from the crippling pain!! Do you of someone you know have or ears of someone with this problem!! If new stim don't help my life is not going to be worth living!!! I am in that much pain!! And now depression on top of that!!
    • Laura3333
      Laura3333 fred92666

      Posted

      I feel so sorry for you. I have had awful back and leg problems for so long, I can't imagine what it would be like to feel normal.

      I have just had to learn to live with it because there is no other option, I don't go anywhere for any length of time, and even then suffer afterwards.

      If somehow you can accept the fact that you have to make the best of your life, restricted as it is, the depression will ease off.

      All the exclamation marks in your post show the anger and despair.

      Try the other stimulator, it may help enough to let you do some gentle excersices which will loosen your muscles, and also strengthen them.

      Good luck.

    • fred92666
      fred92666

      Posted

      I live in the U.S. Rosie!! And I have tried everything!! Already had two spine Stimson!! The pain I felt everytjme I turned on the second one felt exactly and as painful as the first one got infected!! The Doctor wouldn't listen to me!! On the eight week it finally swelled so bad that it burst!! It was a bad infection!! That infection at the stage it was in could have killed me in hours!! Maybe a day...ten days...etc!! How can your doctor not see it for what it was!! It swelled up so big I couldn't use my legs,arms and all other motions due to the pain level!!see it!! I called pretty much every day to complain!! And know I'm. In so much pain and on so many meds it's silly!! The mri shows no burn scar!! Or he not seeing of reading it right!! Just so happens this doctor works on contract with medtronics as well!! I tales st want an explanation of what caused the infection! And to not put in the new hf10 nevro system I get no relief! So I HAVE to try this one!! I have nothing to lose anymore! But I would be lieing if I didn't say I'm worried(scared) a lot!!
    • fred92666
      fred92666 Laura3333

      Posted

      Thank you!! It's just good to hear some kind of compassion!! Other people just don't understand!! I pretty much can't go over for dinner and drinks!! Or go to a concert or sporting event!! Thanks for understanding and the words of kindness and compassion !! It helps!
    • Laura3333
      Laura3333 fred92666

      Posted

      Oh I understand Fred, I really do.

      I'm despairing too at the moment as my daughter has the same problem, and is going for an MRI tomorrow.

      She just twisted awkwardly, and hasn't been out of the house for 12 weeks, in so much pain, having lived with a mother who has tried everything under the sun, she is so worried that nothing can be done, and her life isn't worth living, can't go out, no partner, no friends nearby, and I am recovering from surgery so can't give her any help apart from listening and trying to reassure.

      Back pain is so common, but it wrecks your life, and is invisible, it's the pain that is the unrelenting awfulness.

      When my kids were young we used to go to relatives at Christmas and after dinner I'd lie upstairs on the bed on my own, while the others were downstairs enjoying the day. I realised then, that if I was going to be liveable with, I just had to smile and pretend the pain wasn't taking over my life.

      God knows how my husband has coped all these years, our way if for him to continue with his hobbies with friends and for me to set up an online business from home. it takes my mind off things, and I can do most things flat on my back using my iPad. I find any kind of distraction helps.

      Just watched all five seasons of Game of Thrones back to back, while my business was on hold.

      I hope your new stimulator helps you to disguise at least some of the pain.

      Life's not fair at times is it sad

    • fred92666
      fred92666 Laura3333

      Posted

      Thank you!! I wish your daughter good luck!! Hopefully it's not heretatery!! I'll say a prayer for her!!
    • rosie50281
      rosie50281 fred92666

      Posted

      Wow! I have not been anywhere near through what you have, which also makes me feel bad in the people including yourself have gone through a lot more than what I am now, even to go as far as soldiers losing limbs and friends, I feel so bad because here I am moaning about what I have got when in fact I should be lucky I have not gone through similar to yourself.

      I feel I am sinking into a similar state in which this pain controls everything, I cannot plan things for definite as I never know until that day and time that I can even get out of the house never mind drive/travel to wherever or sit and watch a meal. At the moment the only thing I can eat is cereal and I still have to push myself to eat that. I do not feel I want to go out as so much effort has to be made to get out and stay out and stay smiling when I hurt. I do not look for a partner as I feel I cannot engage in anything sexual nor feel I am attractive or that anyone would want me as I am. I feel a burden to people. My mum is more mobile than me!

      It has been getting me down for a while but this makes me fight to find just a little tiny bit of hope, if I stop fighting for it and give up hope than I give in to it and I will not let back pain beat me. I will find something to ease the pain a bit so I can live a better life.

      I really hope that the new stim helps for you, it sounds as if you may be losing the hope but please do not give in no matter what, there are new things being trialled every day so never give up that hope. That is what is keeping you alive n making you strive. 😊 x

  • Laura3333
    Laura3333 rosie50281

    Posted

    If you are in the uk, and can find a pain clinic consultant, who works for the NHS and also privately, go and see him privately, just for a consultation, you"ll get in a lot sooner, and his secretary will ask if you have private medical insurance.

    Once they have seen you and established you need NHS treatment, he has to see you within a certain time, not sure what it is, but it usually speeds up the process a lot.

    I was going to suggest a spinal stimulator also as I know several people it has helped and the other poster Fred must have been so unlucky for his body to reject the machine.

    I had a trial, but they couldn't get the levels in my spine right.

    I'm also on the same drugs a you, and find that adjusting the Gabapentin helps with the nerve pain in my legs, but not the back pain.

    It's a really awful thing to live with, I've had over thirty years of a non life after having a fusion and a decompression which didn't help.

    Please don't see chiropractors, discs cannot go back in, they don't slip, they rupture or bulge, and it's not possible to put one back in.

    If they were pressing on your spinal cord you would have had surgery by now, it'd more likely they are pressing on nerves exiting the cord.

    Have you tried a tens, it might be worth a go.

    Diazepam also relaxes the muscles and helps with pain spasms.

    I found the best thing for me was excersices in water, and short swims,it took a few sessions to loosen me up, and I felt worse before I felt better.

    Heat also helps, an electric heat wrap that fastens with Velcro around the painful area.

    • rosie50281
      rosie50281 Laura3333

      Posted

      Hiya

      I have thought about seeing a private consultant but the costs are huge as he would need xrays and mri which would be hundreds but maybe if I requested the notes from the NHS he/she could use those instead. I shall look into this further.

      Also I would try my best to stay away from surgery, only because i have heard the horror stories of it but at the same time I am willing to try anything at this moment in time. But still that would take months of planning, I need something to help now.

      I have upped my gabapentin to 3 tablets 4 times a day so I am on 3.2 grams a day so my gp won't up them anymore. My next step in medication as the gp says is morphine which I am trying to stay away from as last time I was on it I dropped to 8 stone, which because I am 5ft 9 and normally 11 to 12 stone was a big drop but I just could not keep anything including liquids apart from sipping water.

      The mri showed the 'prolapsed' discs were pressing on nerves which is causing all my leg problems. So I believe that it is the nerves and not the spinal column although I get the impression that the liquid/gel from inside my disc is moving more towards the spinal column, the cp said that because the discs are touching the spinal column it is causing all the twitches, numbness, tightness in my back and legs and that all they are doing is getting tighter and tighter which in turn is making the discs worse until eventually they go all together and they cannot reverse the damage. Which my gp and rheumatology have said to me 'do not think this will go away, this IS going to get worse and no treatment will make it completely go away, the damage is done and we can only assist in easing the pain and keeping you comfortable' which scares me to death. So I am not looking to completely be pain free and I realise that this is it long term but I get my hopes up and believe that something has to be out there to help I am 28 years old with a 12 year old daughter, I cannot run on the beach with her, I cannot have a proper snow ball fight and I believe she should not have to see me like this day in day out. I took her to a little mix concert and could not drive home because I had been sat for 3 hours, I couldn't even get up and do a dance with her. This scares me.

      I have the tens machine on but I do not feel any results only that I feel more tense, the pain clinic nurse told me to have the tens machine on only at bad times for 3 hours off for an hour then back on for 3 hours. Which i do stick to it on my worst days and somehow I get through it.

      I have a lavender wheat bag which I use on the not so bad days or when I take the tens off on bad days, I also alternate hot and cold.

      I do have diazepam but with the amitryptyline they told me not to take it as I hadon't a twitch that meant I spilt 5 coffees over myself in a month so I cannot take them both together anymore and I find that the amitryptyline helps more than diazepam. But maybe worth a swap round.

      I find pilates really helps me and I have found great relief if I do it on good days it helps me stretch and relax the muscles more. I cannot go swimming as I still have chilblains so need to wait for the ulcers to heal up first.

      I seem in such a hole that I am getting deeper and deeper and cannot see a way out 😔 I know I will get through each day but it is a fight.

      Thankyou for your reply there are a few points that I can try in there 😊

    • fred92666
      fred92666 rosie50281

      Posted

      It's sad that it can control all our lives like that!! And people who don't suffer really don't get it!! I have four adult children and five grandchildren so far and it takes all I have to be able to go to there birthday party's and try and hold a fake face for as long as I can!! I can usually last an hour and then need two days to recover!! I used to be very active!! I can't even go fishing anymore!!! My doctor has also recommended a morphine pump as well!! And I told him no way!! Maybe when I'm in my seventies and bed ridden!! This makes life so hard and the depression and stress do a job on you as well!!
    • Laura3333
      Laura3333 rosie50281

      Posted

      God knows where your chiropractor trained, but he is totally wrong, he can't see what is going on, and it's not going to get tighter, it's the nerves that are being pressed on, that's why Gabapentin helps, it works on your brain chemistry, Could you get your GP to prescribe morphine patches and anti sickness drugs? Morphine makes me sick as well,and being sick makes your back worse.

      What I meant when I said go privately, that is just for the consultation, any X-rays tests etc would be done on the NHS.

      If you start by finding your nearest private hospital, search for the pain clinic consultant, or ring them up and ask who does it.

      Then find out which NHS hospital they work from.

      You should be able to get your GP to do a private refferal.

      I've done this and although I'm now covered by Bupa, you should get seen faster, just for the consultation, and then they will speed up a hospital appointment.

      Having had over thirty years of not being able to go on holiday or even out for the day to take my children out, I know exactly how you feel.

      But I've spent too many years trying to find a magic cure, and after lots of painful procedures, have decided for my own sanity, I've got to just accept the fact I'm never going to be pain free, rather than putting myself through more pain.

      It's hard to do this, but if you can get your head round the fact that you've been told you won't get better, maybe you can somehow stop putting yourself through the wringer.

      Yes you're scared, but do the things you can do, Pilates etc, don't try and push yourself too hard, it will make you have a worse day, accept your limitations.

      Don't get deeper in the hole, stay at the same level! :-)

    • rosie50281
      rosie50281 fred92666

      Posted

      It is sad and it gets to me most in that it does not just affect me life but everyone around me too. I hate it how it is becoming to define me asmile a person. But I tell you something it won't win, I fight until the end.
    • fred92666
      fred92666 Laura3333

      Posted

      I'm just hoping that this new nevro fh10 will be different!! I know I'll never be pain free but if I could get 20-25% and could cut down on pain meds I would be very happy!! But I don't want to get excited because I have already done that been there scenario !! But I will never give up!!
    • fred92666
      fred92666 rosie50281

      Posted

      I hear you!! But I guess we have to keep trying at all costs!!! And pray that soon they will create the right machine!! My family is what makes me fight!! They are my world and I will ,have and will again suffer to be at family events!! Even if just an hour or half hour!! They will know you were there!!
    • Laura3333
      Laura3333 fred92666

      Posted

      I hope so for your sake.

      Do they just put two electrodes next to your spine, it's a few years since I had my trial, and they put four in, never got as far as the stimulator being implanted, because the canal was too narrow to get the top two in the right position, I had a fusion which was at the wrong level, they didn't have mri's then, so basically went on disco gram and symptoms.

      I wish I was brave enough to try it again with my current pain specialist, but after lots of different injections, which didn't do anything, and in between, two knee replacements, and now have arthritis in my spine, I don't think I have the mental strength or energy to go through anything else.

      Also just had two more surgeries for "lady problems" and need to get over those.

    • rosie50281
      rosie50281 Laura3333

      Posted

      Yeah I keep doing the pilates and I think I've found the right balance n how far to push myself.

      I see, sorry I misunderstood, I will Google it and search for some now.

      I will keep going, we haven't a choice have we. But I have come to the conclusion that chiropractor is a load of crap. So off to find a new lead haha. I am determined to get some of my life back. I've gone from mucking 40 horses out, riding for 2 hours and teaching for 3 hours so I will get back to enjoying a toddle out for half hr. 😊

      Hope you recover well. 😉

    • iellen32
      iellen32 Laura3333

      Posted

      Good word, Suzy, based on your experience and your common sense.

      There is a moment people arrive to the same conclusion as you!

      Procedures after procedures and no cure ....

      Take care.🌺

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