Frustrated and dont know what to do !!

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This topic contains 21 replies, has 7 voices, and was last updated by  lc 5 months ago.

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  • #46210

    frankie
    Participant

    Hi everyone,
    fantastic forum and as i hate to say it, its good to read stories where people are just like myself, and by reading some stories my problems are no where near as bad as others. As a man i’m now feeling like a bit of a wimp. 🙂 So hats off to you guys.

    Anyway I’ll compress my story as much as I can.
    Im Frankie 44 from Scotland and have had back problems since I was 30 where my lower back went into spasm and it floored me for a couple of weeks and then back at work. My last back episode before this one was in 2013 with a few niggles but soldiered on.

    This time its different. In August 2018 bottom of my back went into spasm when I bent down and thought a couple of weeks and i would be fine but i was wrong. Couldnt walk sit or sleep and lost just over a stone in weight in 2 weeks.

    After 3 weeks I went to an osteopath and had 3 sessions and was back at work the next week. Stupidly though that was too quick (work in construction) and my neck and middle of back started to get sore to the point i cant even sit on a chair or drive without being in agony. Also get sharp pains in bottom of back and both knees ever since.

    Has a bad episode one evening and i had to goto A&E as my right arm started to tremor and my full back kept going into spasm. I was prescribed naproxen. Took it for 3 weeks but didnt help any pain and then out of the blue i went into a deep depression with bad thoughts and just crying all the time. Dr took me off that and gave me diazepam and tramadol for 1 week and it helped although he wont prescribe me any more due to its addictiveness which is fair enough.

    He then gave me Amitriptyline and started on 10mg then upto 25mg but thats not helping. I got a telephone consultation to see if he could give anything for the pain to allow me to get back to work and he said theres not much else he can do for me and then said that in his opinion I should think about retiring !!!…..I’m 44 and dont know many people who can retire at that age. Cant believe he said that knowing that I had hit rock bottom the week before.

    Im self employed, not worked since November so not had a penny coming in and no sick pay either. I had asked the Dr if he could refer me for an MRI but he says this is pointless and refused. I asked if he would give me a referral and I would pay myself and he again said it would achieve nothing.

    Ive done the NHS physio and they have signed me off because the exercises were not helping. Been to pain group therapy meetings and started Bowen Therapy 3 weeks ago so will give that a chance.

    My GP has basically given up on me and i honestly feel that he has let me down given the fact that before this injury i had not been at a doctor in 18 years.

    Financially I need to get back to work and have searched for places who do private MRI screening and thought I had won a watch where The Edinburgh Clinic was doing a full body scan for £799 but it was an old offer. I contacted them anyway but they need a GP referral.

    Has anyone else had a private MRI that they could recommend ?

    Looks like I didnt manage to keep it short and sweet.

    Thanks to anyone who has taken the time to read my moan 🙂

    Frankie

    #46211

    nikki
    Participant

    Hi Frankie,

    Sounds to me like you need to see a different doctor, each one that I have seen about my problem seems to have a different opinion as to what is wrong with me. I don’t understand why your doctor won’t prescribe things for you. I have been on tramadol and gabapentine for 2 years and oramorph for over a year and a half.

    I have been getting nowhere with the NHS and quite frankly have lost all faith in them. I went to the upright MRI centre in Leeds and I travelled to another of their clinics in London. In Leeds they scan your body whilst you are sitting which I think is better than those that are done lying down. I know you would have to travel,so did I but it is worth it if you can find out what is wrong with you.

    I did a self referral which you can get off their website and I think I paid £500-£550. You are entitled to a scan on the NHS after being in pain for 6 weeks though.

    Hope this helps, take care of yourself
    Nikki

    #46212

    frankie
    Participant

    Hi Nikki

    thanks for your reply. Yes Im going to change GP. The scans here are £1000 Plus so wouldnt mind travelling as funds are low.

    I think possibly that he wants to see how the Amitriptyline is working before giving any pain killers but I should really push to get some as over the counter painkillers dont touch it and im struggling every day.

    Im the type of person who just goes with It and i think he picked up on that.

    Frankie

    #46213

    nikki
    Participant

    I’ve been in pain with my back for 2 and a half years and one thing I’ve learnt is that there is no point in going through pain if there is a way to ease it. My medication doesn’t take all the pain away, but it does help enough to get me through the day.

    Unfortunately people will pick up on the way you are and you will always be left to struggle. I’ve found that you have to be a bit forceful in order for get what you need.

    #46215

    AnnieD
    Participant

    Hi Frankie – welcome to this site and I completely understand how you feel about your GP – mine has been the same. Seriously this site has been a lifesaver and it’s great to know you’re far from alone. Oh wow I did Bowen therapy too, but the therapist was too far away for me to keep going.

    Is it worth going to an Urgent Care Centre and advise you couldn’t get a GP appointment, as I’ve had scans via this route, as I had vertigo so bad I went for some meds as I couldn’t get a GP appointment, and got a CT scan, as most centres are attached to a hospital.

    Have a look at these if helpful –
    https://www.nhslothian.scot.nhs.uk/YourRights/FOI/RequestAndResponseRegister/2018/2586.pdf

    https://www.spirehealthcare.com/spire-edinburgh-hospitals-murrayfield-and-shawfair-park/treatments/a-z/mri-scan-magnetic-resonance-imaging-scan/

    Yes, I’ve had a private mri in London, but with being a private patient I didn’t need GP approval, but my results were sent to the GP, and my experience is I got the wrong area MRI’d due to this is the only area the medical team ever referred to. Plus a patient may have severe back pain and an MRI scan that shows a relatively normal-looking spine, or conversely may have no back pain but the MRI scan reveals a lot of anatomical problems.

    What I learned far too late in the day is that if you have back/pelvic pain – you really need to be doing exercises which strengthen your core, as the pain weakens your muscles. Lee on this site is pretty knowledgeable here!! So I sit on this special cushion which is actually the equivalent of sitting on an exercise ball, and it exercises your core muscles without you even knowing it and I can sit and walk for far longer than 30 minutes without ending up in agony and unable to walk. Obviously what works for one person doesn’t work for another.

    I’m sure others will also have additional comments to help you too here…

    best wishes & take care AnnieD

    #46217

    lc
    Participant

    Hi Frankie, Welcome to this site, Tramodol is is an opoid which is ok for pain, but I have found that most opoids will not take away nerve pain. amitriptyline , gabapentin, lyrica pregabline and such like, can be used for nerve pain and most are pretty effective,for those that can tolerate the side effects, if any. naproxen is a anti inflamatory so ok for things that are inflamed like arthritis, ect.
    some GP’s do get a bit confused sometimes as when people say i have back pain it can be your back but sometimes it can be SI joint that is problematic, Fistly I would get a second opinion to your ailments. as this could be a prolapsed disc if your getting nerve pain in buttocks /down one side in your leg, but if it radiates around top of pelvis /feels like its to one side of lower back near your coccyx and radiates to front of groin then this could be SIjoint , but saying this it could all be just be muscle spasms, which can be just as painful, secondly you just got to try and relax by meditation or relaxation methods, try hot and cold compresses and gentle stretching exercises/core strengthening and soon as it hurts stop, then try again later,or a gentle swimming is good to get your muscles stretched and working ,or even a walk or cycling, if you can manage this, just take it slow and easy and build it up slowly. If you do get to see a different GP or Go bact to the original one and tell him/her that you are still struggling and the meds are not that effective to get me back to work, and you would like further advice /tests to find out what is exactly going on with you, so whatever it is that is causing you this pain, can be treated correctly with medication /physio ect. Long term pain will eventually cause you to get depressed, so I found that CBT and mindfulness helped me with this. I had to pack up work at 30 years old after fractured/dislocated pelvis and 2 spinal ops in one year, now with SIJ problems and arthritis, nerve pain/damage, been like this for over 20 years. wether you go to a differnt Dr or stay with original you need a proper diagnosis/ tests to what is causing you this pain so that you can get effective treatment to it. Let us know how you get on, and I hope you find what is causing your pain and get the right treatment soon, sometimes you just got to be a nuisance with GP’s and keep complaining to them so they give you the right treatment and not keep fobbing you off. take care and best wishes, Lee

    #46219

    Helen H
    Participant

    HI Frankie
    just to say ‘welcome’ and I can really empathise. Many Drs are just out of their depth with patients presenting with pain…but there are good GP’s too, and I am afraid I agree that it is worth trying another GP. A good GP will want to help you to get back your mobility etc.

    I agree with Nikki’s advice. My experience of getting scans etc is that you only get what you fight for. It shouldn’t be that way, but it is. I waited nearly a year for a referral to a pain clinic- I phoned them in tears and pain, and BINGO an appointment was miraculously available!

    It must be so tough not being able to work, and frustrating too. Presumably you have been paying NI contributions so might be entitled to apply for some cash in the short term.( Citizen’s Advice are really good at knowing the benefits system) Don’t think about retiring at the moment- that may/may not become necessary. Amiltriptyline helps me sleep, but it can take a while to get the right dose.

    I wish I had more answers, but just wanted to say I understand!

    Take care
    Helen

    #46220

    PaulT_99
    Participant

    Welcome to the forum Frankie.

    Its sounds like you really have been through the wars. I too am in construction and know how tough it can be out on site. Although thankfully i dont do the manual work anymore. (You may have to consider the same).

    First of all, you are allowed a 2nd opinion on the NHS. So go back to your GP and ask for a 2nd Opinion. They have to allow that by law. You can then go somewhere else and hopefully get better healthcare.
    The route cause of your back spasms has to be found one way or another.

    re The drugs you have been given. Tramadol is only for medium pain. Ive never found it that good for nerve pain, and in addition it makes you feel bad / sick.

    I would recommend “Tapentadol”, its a new drug thats only been out a few years and is specifically designed for Nerve based pain. The tablets are tiny so easy to take and its very fast acting. Typically within 20mins. The bonus is that it doesnt really have any side effects apart making you a little dozy if you take 2 tablets.
    Alot of GP’s my own included has not even heard of it, so you might need to push for it. It does exist and is promoted by St. Thomas Pain Clinic in London. Which is the UK’s leading pain clinic.

    In the meantime, even if you get the pain under control with say Tapentadol. You MUST take care of your back. So be very careful in everything you do. There is clearly something mechanically wrong given the issues you have detailed above.

    Best of luck mate, and were all here to chat if you need us.

    #46221

    PaulT_99
    Participant

    Hi and Welcome to the forum Frankie.

    Its sounds like you really have been through the wars. I too am in construction and know how tough it can be out on site. Although thankfully i dont do the manual work anymore. (You may have to consider the same).

    First of all, you are allowed a 2nd opinion on the NHS. So go back to your GP and ask for a 2nd Opinion. They have to allow that by law. You can then go somewhere else and hopefully get better healthcare.
    The route cause of your back spasms has to be found one way or another.

    re The drugs you have been given. Tramadol is only for medium pain. Ive never found it that good for nerve pain, and in addition it makes you feel bad / sick.

    I would recommend “Tapentadol”, its a new drug thats only been out a few years and is specifically designed for Nerve based pain. The tablets are tiny so easy to take and its very fast acting. Typically within 20mins. The bonus is that it doesnt really have any side effects apart making you a little dozy if you take 2 tablets.
    Alot of GP’s my own included has not even heard of it, so you might need to push for it. It does exist and is promoted by St. Thomas Pain Clinic in London. Which is the UK’s leading pain clinic.

    In the meantime, even if you get the pain under control with say Tapentadol. You MUST take care of your back. So be very careful in everything you do. There is clearly something mechanically wrong given the issues you have detailed above.

    Best of luck mate, and were all here to chat if you need us.

    #46222

    frankie
    Participant

    Thanks everyone for replying and very grateful of all advice given which gives me thought. I am going to make another appointment for pain relief and push for it more as well as trying to get an mri done privately instead of waiting as it hopefully gives me answers and the next direction to take.

    Lots of positive attitude on here which I like.

    Frankie

    #46224

    lc
    Participant

    Hi Frankie, forgot to say, That osteopaths are mainly all about that clicking and crunch sound they make and in my experience unless you find a really good one, which a few and far between, and personally I would steer clear of them as they can sometimes cause more damage than good. I understand how hard it is and how you feel with empathy as I was an electrician and mechanical engineer, also if you go private for a scan basically they are just after you cash and as posted above they can get the scan wrong . personally I would go the NHS root . I know its longer, but you should get the right diagnosis in the end. if you go private do your research first. but in the end the choice is yours, please keep us informed of how you get on ,In the mean time take it steady, take care and best wishes , Lee

    #46250

    frankie
    Participant

    UPDATE:
    Made appointment at GP as i have new pain now. Have horrible pain in both legs going down to my left ankle and i have around 5 sores on my back that just came and never had that before so probably unrelated.

    GP was a locum and very nice but i got the feeling that she had heard this all before and i dont think she took me seriously. I wish i was kidding !! Said that all the Amitriptyline was doing was making me feel tired in the mornings and struggling to get up.

    I know that these doctors dont have a magical cure, but i need pain relief so i can get back to work and investigation into whats happening with my neck and back. Im not taking co-codamol anymore because its not touching the pain.

    Ive done the chronic back clinic, the physio, the talks but im going backwards now. Even walking upstairs i feel like an old man.

    I found it strange that with the new added pain she never done any examinations on me. I pushed for further investigations to be done like MRI but fobbed me off. She eventually agreed to write a referral for a specialist to see if he thinks i need an mri scan but as i need an urgent assessment im going to pay private even although im skint not having worked for 4 months. She also changed my medication to Gabapentin.

    I can also see my relationship with my wife being affected. Im the kind of guy who actually loves working and i hate seeing my wife having to do extra shifts at work while im feeling useless not earning a penny.

    Im probably a bit of a moaner and not good with pain and i know im a pain to live with.

    The conversations not there anymore between us and im now on my 4th night sleeping downstairs just to give her some time. I thought i would have got the ‘WHEN YOU COMING BACK TO BED ‘ 😉 but im actually fine where i am at the moment.

    When i look at her i can see that shes not happy. Love her to bits and i know she feels the same, but i know we are drifting apart.

    Anyway, Im back at work on monday on the tools because i just cant sit about or walk the dog etc… Im not physically fit but Im pushing my stubborn backside into it. Well that and the fact im skint !

    Im now at the ‘I dont really care anymore’ stage

    Other than that im great !

    #46251

    Fred
    Spectator

    Hello Frankie

    I’m sorry to hear about all the issues you are dealing with but I might have an alternative I don’t know if you might have tried yet. A lot of my friends have been using CBD oils to deal with their pain and discomfort. I don’t know if it will work in your situation but it wouldn’t hurt to try.

    You could pick up a bottle at any of the cbd websites and give it a try. If it helps please send me a reply I would like to know if it could make a difference for you.

    • This reply was modified 5 months, 1 week ago by  Jan Sadler. Reason: Removed link
    #46253

    lc
    Participant

    Hi Frankie, You have to be persistent with GPs and be a pest, before they actually do something constructive sometimes, nice to here your trying a different drug , so thats a plus. It does cause a rift and troubles with partners, I,m afraid that is the start of it, what your going through ,the only thing I would suggest is what I done, sit your partner down, and have a good talk, about how you feel and your struggling with pain, put all your cards on the table,tell her you love her, and hate seeing her and her reactions to something which is not her fault and it is not yours either. I,m afraid it is a test of your relationship and see how strong it really is ,I’m Lucky we pulled through all my troubles and have an understanding and caring wife. But sorry to say some don’t make it, and they split. life has a funny way(NOT) of testing yourself and relationships.We have all gone through this on this site. so others can on both sides give what they went through, but at the end of the day all very similar., Keep fighting the GP’s and I hope that things will start to move in the right direction in time. also Think about your long term health and sanity and don’t mess yourself up at work to a point you collapse. as this is what I done and now no longer can work. take care and best wishes. Lee

    #46254

    Helen H
    Participant

    Hi Frankie-

    There is a reason ‘In sickness and in health’ is in the traditional marriage vows- pain really puts a huge strain on any relationship. Your wife is probably as scared and worried as you are. Pain makes a lot of us grumpy and unreasonable at times- and it can be hard not to take frustrations out on your nearest and dearest.

    Both my husband and I both live with constant chronic pain. He had had it for a while when we first met, and I really found it hard to understand. Now I have pain too, so, you could say I can see both sides!

    Make the first move to say sorry things are so tough and you really appreciate how hard she is working, try to put yourself in her shoes. Keep communicating and listening.

    I know that is tough but dig deep- it is not easy to find that special person and they are worth fighting for.

    Take care, Helen

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