chronic pain .....How do you cope? I'm running out of fake smiles to hide behind. & all out of fight. hope. trust in the medical profession!

Broken Neck c4 c5 vertebrae and crushed spinal cord . peripheral nerve damage . in curable chronic pain. a whole load more symptoms the list is too long and bores me. hard enough having to relay them to medical persons and live with them every day . one step at a time....... im not good at this sort of thing and its the first time I've tried to talk to any one about it. SO here goes .... My story ......I was landscape gardener and brick layer ,felt unwell at work , got home ,lost a day and night, saw my Gp. asked was it normal to have electric shocks running down me arms for a trapped nerve ?, next day fell while trying to stand up spilt my chin up into my mouth so off to gp again. .sent me to hospital for x-ray and stitches. was x-rayed was told there's a mass at the top of yr. spine I'm afraid its arthritis. I politely asked him to go away and diagnose me with some thing else as I work outside for a living and wasn't happy with his diagnosis id of perfurd slight bruising or something may be . saw gp again due to lack of sensation in my arms went to hospital . 15 days later after being treated like some experiment having the same tests repeated numerous times but given no answers . my blood pressure became dangerously low and I was at last I was given a mri . . the same nurse that had treated me like I was a time wasting faker came running towards me and grabbed me to try and lie me down for some reason ............ it didn't go well....... another assault charge! some time later after id calmed down from people pulling me about without explanation this chap arrived (un be known to me was my surgeon and the man that despite the odds saved my life!. ) he spoke to me and explained that my spinal cord was trapped in a dangerous position and it could be fatal surgery was necessary immediately and the nearest neuro hospital was set up and waiting for me he couldn't believe how id gone so long and was still able to walk (shuffle any way ) . I was given poor odds . and here I am. I was given donor vertebrae mine were made into a pulp to help set the bones donated my spinal cord was relieved but suffered permanent damage a cage was put round it all and bolted together . when I woke I was told id have to go to rehab to learn to balance and walk ............... I joked and said I didn't need to learn how id been doing it just fine up until now and being the stubborn witch I am tried to get up.......... after the anesthetic wore off I tried again and indeed was up right and shuffling towards the door .........escape! yes I did I had to get home for the one thing that makes me fight every day ... my egg I hatched nearly 20 years ago ... My Misty Bird (African Grey Parrot) I'm her pet human . ......... I tend to joke about my health and put a face on it for others. this is my attempt at trying to say how I really feel under the fake smile and to be fair I do have more teeth than a comb! and am quite good at it! so here's hoping to talk to others that have to live with chronic pain and maybe learn a few things that might help . thank you for taking the time to have read this. Littlemissfrosty x

11 Replies

  • Hi frosty. Welcome to the Community. A lot us that hang around here live with chronic pain. I treasure mine as I have had it so long I wouldn't know how to live without it. You may not have forgotten how to walk but I gave up on that a long time ago. I let my staff do that for me ;-)

    Too much pain too sleep tonight. How about you? How does one cope rather depends upon which part of your new life you are referring to. Hopefully your pain issues are being address via your GP. Nothing will make the pain disappear. The term pain killer is a misnomer. You should be able to arrive at a point where your pain is tolerable. This may take some time and a lot of practice. Your Medication may need the help of a referral to the Pain Clinic at your local hospital. In addition you may find a Tens machine will help. You may be able to borrow one from hospital or GP for a short time but it will give you time to assess its helpfulness.

    Distraction or meditation may help. I use audio books to provide a distraction. They run all night so as to have a constant other than the pain.

    How one copes with the massive change in your life takes a huge effort and generally is a long process.

    Regards Rib

  • Another sleepless night for me again only had one or two good nights the past 2 weeks I've had nothing apart from physio which made things worse I'm on painkillers 9 months I've been taking them plus I had a divorce to put up with my ex wife also wants a financial order from me I've already lost my house too her I'm not working cause of my problems I dunno where it's going to end had enough of putting on a brave face etc I read the posts on here everyday and sometimes I cry with what other people have to live with then I think about the children in a war zone and count myself lucky I'm not them.

    Welcome along great forum this so many nice people all in it together

    Take care

  • I ditched the NHS and went along the alternative route. Chiro, Bowen, Craniotherapy, massage, aromatherapy, sports physio, counselling, hydrotherapy, Chinese, Accupuncture, pilates, yoga, meditation, mindfulness and a few more. They have all helped in their own way. All therapists I've come accross are very experienced in pain management, pain pathways etc. I've learnt so much about my body, how and why it behaves the way it does, what to do when to help it.

    I've used painkillers twice in 14 years, both for about 8 weeks. I don't see thevpoint in takung them if they don't work effectively. All they do is build up your resistance to them and you need more and more in the long run. It does make life complicated if you ever need an operation.

    It's not been easy. Many of the early treatments made me alot worse before I got better, but the long term benefit is what to focus on. A general rule is that it takes the same length of time to stabalise the body (muscles working properly, no compensation, triggers under control) as the length of time you've had your injury.

    I had my injury for 8 years (the root of the pain was discovered 2 years after this). I'm on maintenance treatments now. I get a massage when my body doesn't relax with my stretches. I do daily exercises and walking. I do a full meditation once a week and several small ones throughout the week. I talk to my pain and give it permission to fire off when I'm going to do something (like my recent camping).

    I also made my environment safe for me - kitchen, bathroom mainly but also a high bed and decent chair to sit in.

    Taking full control like this needs commitment, insight into your condition and it's problems, determination, belief in yourself that you can do it, support from friends and family is a bonus but not always there.

  • When was this op. Frosty? I ask because I believe even very serious injuries can heal and the nervous system, including the spinal cord, can improve in time. So how much time have you given yourself?

    Coming to terms with spinal cord injury and subsequent pain or/and disability, can take years. You can find a comparison in bereavement adjustment, with its six stages of shock, disbelief, bargaining, searching for the lost person (you), depression and finally, adjustment.

    I can identify with you a little, in that I had two injuries to my neck in swift succession, resulting in C3 slipping over C4. I am still playing catch with the surgeon about fusion and meanwhile I also have low back pain from ground down facet joints, discs and stenosis near the cauda equine. I have ceased to think of myself as living on a knife edge as things haven't deteriorated much over the past three years, except the pain has worsened and spread. I take only paracetamol and sometimes chewable aspirin. My body won't tolerate anything else and I'm now glad about that as most people on here will tell you nothing works for chronic pain and the side effects don't seem worth any slight relief.

    Did you have no rehab? You need to know how to exercise to keep your muscles going. Read what Zanna has to say and talk to your physio about what is appropriate for you. They say it's best to accept but I always live in hope and I'm grateful I can still do things, even though it all bloody hurts, my ears roar and I'm still dithering about surgery, the risks and the after effects. Good luck, you can make a life with this.


  • Please ask your Dr to check your vitamin D & B12 active & serum,folate,ferritin,iron,MMA,homocysteine.Vitamin deficiencies are not recognised or treated today.My hubby & I both have memory & hearing loss (tinnitus),numb feet (which caused us to fall )this is the result of nerve damage thanks to misdiagnosis.Thankfully our weekly b12 injections have made all the difference to our energy levels & mobility.Check or ""Diagnosing & Treating Vitamin B 12 deficiency" for vital facts.It does cause joint ,neck,back,knees,hand pain,electric shocks as nerves are being stripped of myelin sheath anywhere in body.Once b12 is above 1000 then there is a chance of repair.

  • Welcome to the site and a huge well done for talking about it. It's a good start. Have you ever done CBT? It may help you especially if you never talk about it. We are all here to help and listen which helps too x

  • Welcome to the site. Here you will find a huge mix of all sorts of people with all sorts of ailments. Best of all you will be supported, listened to and giving as much help as is possible. I learn something new here every day. I can have a rant, give support, share a joke, ( Must be having a good day for a change)

    I was going to liken the journey we are all on as similar to the bereavement process but see Calceolaria has explained it the way I would have.

    I am coming to realize that I have to deal with my situation. I cannot rely on anyone else. They just do not understand how the pain is and how it affects me. Until you go through it yourself you will never get it. I consider it a bonus now when someone helps in a way that really makes a difference and am grateful for it. I just don't expect it as my right because I am suffering. Also People close to you find it very hard to let go of the old person you were and accept that you now have limitations. Oh that I could get my old self back!

    It is not all doom and gloom. I have found lot,s of things that I get pleasure out of. Music is a good friend as is reading. Craftwork and the internet which keeps me in touch with friends and family all over the world. This I pace myself doing. Every half an hour get up, make tea, stretch and walk around a bit. It's all abut adapting.

    Hope things get better for you. Ann

  • Hi frosty

    It's so sad so many of us in so much pain & turmoil :(....for me I've decided I'm going to start growing cannibis :)

    I have a wod of spinal arthritic problem seized vertebra etc when I got the cancer diagnosis last year I thought great now I'm at the root of all my pain problems & can get! fool me, 13 surgeries later & now endless pain. It's the only thing that makes me not want to live...& then I look at my now 6 year old totally relying on me as her dad forgot all about the sickness part of his wedding vows...I have noticed for some weird reason people who have less burden do worse. I have met people with money, support etc who are having a worse time than the mind definitely plays a big role in coping & living with a broken body. I know how hard it is loosing 'everything' but at some point life does become about the simple things like smelling the roses...I have reiki every week as I can't have massage because of the cancer...I wouldn't cope without it...sending loads of love & sunshine to you all xx

  • So very sorry sweetheart!!! I know all to well what living with chronic pain is like. Have you tried going to a pain clinic? I was at my wits end and suffered for along time until I couldn't lay my head down on my pillow. Then tension in my shoulders, neck, and head were unrelaxable New word, ha ha. Anyway after no rest for most of a year I caved and went. Now I still have pain but it's mostly bearable. I take Opana ER twice a day. I hope this can help you with your suffering. I like you worked a physical job. It's depressing to no longer be able to do the things I had always done without thought. I'm glad you joined our group as it's very helpful and you get lots of information. Welcome sweetheart and I hope you get the help you need to find some relief from your suffering!!! Hang in there!!! xxx Mitzi

  • Hi there, and welcome. Sorry to hear that you are having a tough time. I have chronic pain and fatigue, and like others have started to query the long term use of prescribed drugs as the side effects as horrible!

    Personally my 2 miniature schnauzers help me keep smiling everyday. Pet therapy rules. I have found the headspace app and alternative therapies such as massage, reflexology, yoga and pilates much more helpful than anything offered to me on the nhs.

    Good luck. x

  • I get a lot of support from a spinal cord injury forum - There is a heap of good advice as well as support there,and really practical support as well,from folk who have been through the same.

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