AS pain making me want to end my life

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This topic contains 14 replies, has 10 voices, and was last updated by  Si78 2 weeks, 1 day ago.

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  • #45749

    Jo
    Participant

    Hiya,

    I’ve not come seeking attention I genuinely want to know if anyone has overcome the pain of AS and what it took to do it?

    I’m on 30/500 Cocodamol, Naproxen, Estiloxib, tramadol (for night time) and Oramorph (for emergencies), Omeprazole, and 40mg Citalopram.

    I hate being on all these meds, but without I cannot even attempt to live a normal life. I do my physio and go swimming and walking daily. despite this, I have gained weight from lack of excersise and that makes the AS worse, which makes exercise harder. It’s an evil circle.

    I am terrified of being in a wheelchair (No disrespect to those who are but I’m only 30 and an not ready to give up my independence). I have a 3 year old son who I struggle to play with and desperately want more children, which I would have to come off my meds to have.

    Life just seems pointless and I feel like I am a burden to my partner, family, friends, and work colleagues.

    I can’t sleep with the pain so I’m making stupid mistakes at work, I’m afraid of losing my job.

    I feel like I can’t go on like this, but I don’t want to die. I just want my pain-free life back.

    Thanks for reading. Much love xxx

    #45752

    Claire
    Participant

    Hi jo

    I’m so sorry to hear you’re struggling.
    I have no experience AS but just wanted to reach out to you. I’ve just stumbled across this forum as I am having a flare up of my chronic pain (I have ME) and am feeling really low this morning.
    I can totally relate to the feeling of making stupid mistakes at work! This drives me mad! But when you’re putting so much energy into managing and blocking out the pain, there’s sometimes not a lot of room for work stuff!
    Be kind to yourself today and prioritise yourself(that’s what I’m planning) and just keep swimming.

    Claire

    #45753

    Jan Sadler
    Keymaster

    Hi Jo

    I’m glad you’ve found our PainSupport website and forum. It really helps you not to feel so alone.

    There are lots of methods of reducing pain explained in our pain relief section in the main menu. We also have available many free downloads of useful exercises and tips. Plus, of course books and CDs/downloads specifically for pain relief.

    I don’t have AS (Ankylosing Spondylitis) myself but know how painful it can be.

    I hope some other members soon join in this thread to welcome you even if they don’t have AS.

    As soon as you start taking care of your pain – that sounds odd, I know – you will find you are better able to cope with all the things you want to do. You could try the Pacing and Breathing pages on our website to start with.

    By the way, don’t dismiss a wheelchair entirely, you can use one like I do, I just hop in it If I need to and walk most of the time. It saves aggravating the pain.

    Keep in touch!

    Jan at PainSupport

    Here’s the Pacing page:

    Pacing

    I found this link you may also like to investigate which is a site purely for AS:
    https://www.shapeyourasfuture.co.uk/

    #45755

    lc
    Participant

    Hi Jo, welcome to this great site, sorry to hear your struggling,I don’t have AS but do suffer nerve damage /pain constantly and arthritis after fractured /dislocated pelvis and 2 spinal ops. so do understand your pain and have felt like you do in the past being in constant pain does cause depression which a lot of us on this site have and do suffer, Jan has said most of what i would have said and it does work, I have done CBT 1 to 1 and followed with a mindfulness course it is these two things that have kept me going to change the way i think and feel about what is going on, and be able to cope and deal with it all.
    If you have not done this you could talk to your GP and tell them how you feel and ask if they could refer you to CBT and mindfulness it these two things that have been a life saver for me ,just got to keep an open mind about it all. you could enter things in the search forum box and it will come up with all other posts about what you have entered. Take Care for now and best wishes. Lee

    #45757

    Jo
    Participant

    Thank you all so much for your kind words!

    It’s so nice to feel supported and less alone.

    I’ve tried meditation and mindfulness to some minor success, but I’ll try the looking at the pain relief section as suggested.

    I’m already doing CBT for PTSD following a severely abusive relationship and I’m loath to add this to my therapists ever-ever-increasing list of my issues, but maybe I should tell her.

    I’ve got a GP appointment tomorrow morning and I’m going to be brutally honest with her. I don’t want to get signed off work but as I think I’m on the max meds I can be on for now I don’t know what else she will offer me.

    It’s the middle of the night when the pain is at its worst when I get those dark thoughts. There just seems no other way to escape the pain.

    Thank you again for your kind words xxx

    #45761

    Raphael
    Participant

    Medical cannabis is legalised from 1 Nov 2018.

    There may be some hope for you here, but the Medical Cannabis must be prescribed by a Specialist. Get yourself booked in at your pain clinic for November. This is hot off the press.
    Read the very simple legislation here:
    https://www.pharmaceutical-journal.com//news-and-analysis/news/medical-cannabis-will-be-available-on-prescription-from-1-november-2018-uk-government-announces/20205591.fullarticle?firstPass=false
    So it must be a specialist! Just getting it from someone will still be illegal!

    All the best
    Raphael

    #45763

    lc
    Participant

    Hi Jo, if your already doing CBT then great, while your there add all your problems on the table to your therapist thats what I done, and it was broken down to 4 different issues that was dealt with separately one was ptsd that i was dealing with but not the same reason as you.
    mindfulness is a way of life and not a quick fix. also needs to be practised regular. I was on citalopram for depression and after 2 years on it, i asked to come off of it, I was ready, but the only thing I can take for nerve pain is Amitriptyline it also helps me get a good nights sleep. and use a Tens machine when i need to but what works for one doesn’t always work for another so individually its all trial and error for what combination of things work for you.
    Take care and best wishes be kind to yourself . Lee

    #45769

    Lorna5
    Participant

    Pain makes us all really low at times especially when others don’t understand, I don’t suffer with AS but do understand what you are saying I don’t know what I would have done without the support from this forum at times keep doing all the positive things you are doing remember to take care of yourself and know there is always support here
    Lorna

    #45784

    Jo
    Participant

    Thank you all for your support.

    I’ve been to the docs. She’s told me to take the Tramadol during the day as well as night but has signed me off work for the week to make sure I’m not overly drowsy on it. She’s taken more bloods and has contacted my Reumatologist for an urgent appointment.

    I’m seeing my therapist tomorrow and I’m going to tell her everything.

    I was up at 3am last night in agony again. Tramadol only seems to work for a short time. I get restless legs when I’m tired too so I feel like I’m being tortured. I’ll tell you whatever you want to know! Just stop hurting me! I’d be a rubbish spy…

    My doctor told me to focus on the present and stop worrying about the future, but I’m finding that incredibly hard. I feel like I don’t have a future.

    I am enjoying the rest at home though. Almost wish I didn’t have to go back to work but I don’t want to give up.

    I’d give anything to be able to stand up and do the washing up without experiencing complete agony.

    #45785

    lc
    Participant

    Hi Jo, glad your on the right track so far. and glad to hear your going to tell your therapist every thing just lay all the cards on the table of whats bothering you, and upsetting you, don’t be ashamed to brake down either,that’s the good thing about mindfulness it’s about living in the here and now, not worrying about past or future. with your restless legs if it isn’t nerve pain and just cramps and legs jumping, then quinine tablets is good for that. great your enjoying the time at home, do something that makes you happy and enjoy it. think about what makes you happy and something you can focus your mind on rather than thinking about what is happening to you right now. live in the moment of these things that you enjoy.
    Take care and best wishes. Lee

    #45842

    sjb
    Participant

    Hi jo.
    I just wanted to reach out to you as someone who understands living with pain.
    I don’t have AS but I do suffer with chronic pain due to a fracture on my lower spine which causes pain in my back hips and right down my right leg (sciatica) and am having spinal surgery in a couple of weeks.
    It’s good to tell your therapist everything, lay it all on the table and work through it all. This site is a good source of support also. One thing I’ve learnt is how strong people are on these forums and it helps that there is genuine understanding.
    Like yourself the thought of having to use a wheelchair and losing my independence scared me and took a lot of getting used to. but I had no choice so Like Jan above, I now have a wheelchair that I use to get out and about but I have my crutches with me to alternated and do as much as I can without over doing it.
    Not being able to work is hard but you need to do what’s right for you, and your little one, listen to your body.
    I hope you find relief and wish you all the best.
    Sarah

    #45956

    InPainAgain
    Participant

    Hi jo, sorry I do not know what AS is like but I do know what chronic severe pain is like.
    The problem with telling SOME GPs that pain makes you want to kill yourself and possibly crying in front of them because you can’t take it no more, is they start to see it as a mental health condition,they did with me anyway. I recommend researching amytriptaline which is a TCA anti depressant that works on nerve damage, or nortriptaline which is the same thing kind of but less sedative. Best wishes,I know it sucks being in pain.

    #45957

    Raphael
    Participant

    (Do not eat my bird)
    Anyone with a chronic pain problem will be likely to have episodes of depression and anxiety. These may go on for ages. Most treatment is a combination of analgesics with antidepressants and/or anxiolytics.

    Do what you can to reduce these once you improve, but do so very slowly. Ignore what other people say to you. Find your pace but move slowly. People can say some very cruel things to you. Keep a simple pain dairy to quantify your mood changes and drug chart.

    Hopefully CBD & THC will start to be used in due course, but doctors are not yet ready for the changes and stocks of suitable mixtures are not yet ready. They have to be prescribed by a hospital consultant. There is a course available for those interested! They have to overcome their biases.

    Remember you are on a long path and hang in. Not everyone is going to be helped, but the compounds do work.

    Best wishes
    Raphael

    #45960

    Hope
    Participant

    You can legally buy CBD . Just make sure it’s had the
    part that makes you high taken out .

    #46223

    Si78
    Participant

    Hi I suffer from AS and am sorry to hear you are having such a bad time. I have been prescribed adulimumab this really helps me. Sorry if this has already been mentioned in the thread.

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