At A Loss

13 years ago aged 23 i bent wrongly around a doorway and felt a pop and my spine drop slightly at the same time falling to my knees. After a arguement about calling a ambulance because i didnt want to make a fuss they were called. At the time they said it was probally muscles , so me being stubborn really didnt want to waste anytime & slowly left as they said if i can make it to a phone i can go. All night i was in tears and the next day i had no choice to go to the doctor who swiftly sent me back to the hospital, where i spent the next 5 days on my back L5 /S1 had herniated in fabulous style. I spent a year or so struggling with it and it really wasnt to bad , then 8 years ago i went to open a door and was on th floor again , i knew what had happened but struggled to my feet as not to make a fuss, I wasnt in the best of relationships it was quite abusive physically and emotionally . Anyway i didnt see a doctor for 3 years , i slowly went from standing to not being able to stand what so ever and dragging my left leg. I eventually got to a doctor who did a scan and said L5/S1 had gone again in remarkable fashion and recommended a disectomy and fusion but gave me 6 months to think it over. Inbetween this time i got out of the relationship ,had a breakdown and moved away for a short time. I had a couple of buldging discs also just under my ribs.

I came home after the 6 months feeling refreshed to a certain extent , i went to the pain clinic to find out the 6 months had passed and the new surgeon thought it was to much of a risk to do the operation and tried me on various pills instead. I ended up on 125mg of fentanyl which near on knocked me out for 6 weeks. With 4 teenagers this was not a life i wanted to lead nor for my new partner. I tried gaberpentin but with severe insomnia taking 4 tablets over the day really just wasnt working for me. The pain clinic have now just said you have chronic pain theres nothing we can do and see the pain psychiatrist every 8 weeks. I remain on 75mg of fentanyl which to be honest doesnt work on me anymore , ive been on it for nearly 5 years now. I hurt completly from my waist down & own my left leg , i have no reflex in my left ankle either. Ive just been told theres nothing anyone can do and live with it.

I really want to live my life , im 36 yrs old & confined to the house and piling on weight. I never complain to the doctors or even go anymore to say how painful it is , or the lack of sleep that i get to the point if i dont sleep i throw up the following day, as im pretty sure ill have the response theres no more we can do.... what do i do??? do i really have to sit here for the rest of my life and deal with it , i do go out when i can even if its for a short walk , even if i get stuck out , which happens quite often and end up on the floor but i dont want to be in either.

any suggestions would be great

9 Replies

  • Hello Lozmart. Everyone on here suffers from chronic pain. Some days many of us seem to feel better than others. There is lots of info and ideas on here about coping with pain, everyone is different. I suggest you have a trawl through the questions section where you will find all that expertise. I always suggest that all health checks/scans are completed first before you start looking at alternative therapies which many here find so helpful, from tens units, acupuncture, massage and relaxation techniques. Keep your appointments with psychology - always keep an open mind. Your previous relationship will have had an effect on your response to pain. Good luck.

  • Good idea to have a look through all the entries here for ideas but I agree with you! You shouldn't have to sit there for the rest of your life! itmight involve a trip back to the doctor to get some kind of plan together to help you rehabilitate yourself to get more mobile as there will be some pain you can get rid off with help. Someone on here has access to mctimoney chiropractice thru his GP practice or acupuncture and physio. You don't mention whether you've had any rehab? Certainly see the psych coz it is important to talk. Don't give up, there is a lot you can try. Best wishes.

  • Hi there, your story is not dissimilar to many people on this site so we can provide alot of empathy. But to be honest I would google a top spinal surgeon, ask to see him and discuss surgery. I can't believe they won't do the surgery. That's like having a broken leg and not fixing it! Surgical techniques are improving all the time its worth asking. Good luck x

  • Hi and welcome. I am like you and also find it very hard to accept that this is my lot in life, nothing can be done and an operation is too risky. I have, without trying to spell all the medical terms! chronic arthritis in the spine. I have been using a walker to get about locally and after going shopping yesterday, only took my stick with me, big lesson learnt. I am now unable to rely on a stick anymore, I wanted to sit down in the middle of the road and cry. All I can say is you have to keep trying to find something that works for you. Also changes have to be made in the way you live your life. Do everything you can to ease the pain and make life easier to live your day to day life. You can ask for a referral to an occupational therapist who will assess you in your home and they organise any aids that you need and are delivered. They are free and yours as long as you need them. I have also found my chemist is brilliant at giving advice and helping with your medication. Good luck Ann

  • Hi

    One has to differentiate between Medical treatment and patient management. Pain is not always cured by one glorious treatment. It can involve much work looking at ways to reduce your pain bit by bit over a long period of time. Management involves studying yourself with what ever tools you can find.

    The body is an engineering system with loads of different feedback loops. Some more important than others.

    Buddhist Mindfulness is a useful technique and it takes time to learn. You cannot learn it from books. You need to find groups of people who practice it with instruction from a Buddhist monk. The monk is useful in that it shows you what can be achieved rather than listen to a psychologist making claims about what can be achieved.

    You have to study your sleep regime. Are you getting enough sleep. In myself, not enough sleep means more tense muscles and less ability to reduce the muscular stress on the areas that need reduced muscular stress.

    You have to study how you move. Alexander Technique is good for this. Alexander Technique helps with developing sensitivity to body balance and muscle tension. It enables you to spot the warning signs of incorrect muscular usage and enables you to act on the warning signs in a better way.

    T'ai Chi can also be helpful if you can find a teacher who understands it.

    I also have treatment from a McTimony Chiropractor. What is the difference between mainstream chiropractic and McTimony. McTimony Chiropractic is very very gentle. I get my McTimony Chiropractic on the NHS.

  • It's horrible being told that there's nothing that can be done. But remember that the pain clinic have said there's nothing THEY can do, and that doesn't mean that there isn't anything that can be done at all ever by going down different avenues.

    I've found that there is no single thing that helps my pain, it's a combination of medication, injections, heat packs, physio, exercise and reading as much as I can on pain. Being well-armed with knowledge is part of the battle in dealing with this. It is easy for some of us to say this, another matter to pick yourself up and get on with it, and if you've been through a really awful time like you have it can feel like climbing a mountain to try and get back on top of the pain. I have been in that place and it takes time to get started on it but please don't give up.

    To be told you "just have to live with it" is, in my opinion, a big insult to anyone with chronic pain because we are living with it. I think it's great that you're getting out for walks, no matter how hard it is. This will certainly be helping you and by doing this you are getting some control over the problem.

  • Thankyou for your responses everyone , i shall look into some of the things mentioned & hopefully get my pain under control x

  • Hi. I think you are a very brave person to have come through all that you 1-ish!

    I wish these medical people who say "Nothing can be done, just live with it" could be made to have a week actually feeling the pain. Then they would change their tune!! I agree with all the sensible suggestions made on here and hope you get some relief from somewhere. Good luck to you :-)

  • it may also be worth trying another pain unit, he first one i went to basically put me in the too hard basket, the one good thing they did for me was to refer me to another pain unit for their assessment adn the second unit has been great- i was annoyed, angry and very frustrated at having to start fromscratch with the whole assessment pocess again but i soon realized that the 2 clinics worked quite differently- i have been a patient therre for over 17 yrs now and i certainly have ups and downs but they have supported me through that and taught me ways to try to live with pain (thats one thing your pain clinic should have down rather than just send you off to try to igure out how to survive they should have helped in that process!)

    in my case i was assessed as a potential candidate for either a sppinal nerve stimulator or and implanted pump that gives pain meds direct to the spinal fluid. in my case the latter was deemed to be the best and where i had been on massive doses of morphine and other meds with little help, with the pump. very small doses of meds make a substantial difference because the meds go direct to the nerves and also do not get metabolized by the liver before getting to do the job required like oral meds do.- the pump has made life manageable!

    lastly, remember too that knowledge is growing all the time about how to help chronic pain so even the pain unit you saw before may have more to offer you now than they did before so i would never give up on the idea of getting help- if nothing else OT's and phsios should be able to help you cope better- OT's can advise on energy conservation, also gadgets and aides that can make life simpler- they are a wealth of knowledge

    i really hope you can get some more help as i feel your letter could have been something i wrote at the same age- i'm 51 now and even though my pain issues were made worse when i fell and fractured my spine a few yrs back and i was also dianosed with MS- both issues on top of my original problems, life is managable and the pain is sually controlled with just the occasional bumpy patch- you just need the right team to help you!

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