Spine and hip pain new diagnosis spondylitis and inflammatory arthropathy

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This topic contains 50 replies, has 7 voices, and was last updated by  kev76 2 months ago.

Viewing 15 posts - 31 through 45 (of 51 total)
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  • #46671

    lc
    Participant

    Hi Kevin, I do understand your predicament. some times you have to keep doing this before anyone actually does some thing to help. and I understand that it all depends what area your in and resources available. what I would do is, and have done in the past is go to local A+E and say that the pain meds are not working and you feel suicidal and feel like ending it, even if you don’t actually feel like it,play worse than you really are, sometimes that gets you to see a psychologist and then you can explain to them how it is and say it’s been going on for a long time now the uncontrolled pain and bad feelings, and ask that you need help now not 6 weeks later but now ,and desperately need help before you do something stupid. play it worse than it is, but your sounding desperate anyway. also keep ringing the pain clinic every day if you have to, and tell them the same.and it’s an emergency and need help. keep badgering them hopefully it will get things moving a bit quicker for you. that is my final suggestion to you for help. I totally understand and had to do this a few times myself before something was done, even try ringing the Samaritans so it’s all on your record. Hopefully that might work for you to get the e mediate help you need. let us now how you get on. also on monday with the OT assessment tell them how you are, and ask if they can help push things along quicker for you. the more you push for it, at all angles the better the picture of your case. Keep us updated of your progress. take care Kevin and best wishes. Lee

    #46672

    kev76
    Participant

    Hi Lee,Thank you for your advice I already speak to the Samaritans every week but I will start ringing the pain clinic every hour if that’s what it takes to been seen quicker.As for A+E I’ve been many times and sat in here for many hours each time but they never do anything.Tommorow is another day and I can assure u I will ring them all multiple times until I get a plan sorted.I don’t no if anything will become of it but I saw my local mp last week and told him everything about my health the dangerous levels of medication I take and what it is doing to my health and I mentioned that I wanted to try cbd oil.He has promised me that he will look into things for me and get back to me and also said that he would be happy to give me home visits due to my poor health.I will keep you updated with my assessment tomorrow.Take care Kevin.

    #46677

    kev76
    Participant

    Hi Lee,I had my assessment today the Ot said I’m going to have to move to another flat as my flat is to small for a electric wheel chair and they can’t put a ramp outside as there isn’t a enough room.Also I have managed to bring my appointment with the pain clinic forward which I am really happy about.My pain luckily has calmed down a lot and I don’t feel so stressed now.Take care Kevin.

    #46679

    lc
    Participant

    Hi Kevin, Glad to hear your pain is settling down a bit. about your flat If it,s council then ring them and ask for a transfer to a larger ,ground floor flat as you are disabled and need a chair and it is not suitable for one where you are at moment ,if the council start dragging there feet like it’s taking to long to sort, try getting your local MP involved to help push it for a quicker result and get your OT involved to tell the them your predicament with flat to.so you can get some of your independence back. also good news about pain clinic. flare ups of increased pain can be you done to much that day or something stupid like i have had a massive flare ups in past just washing my hands and turned a bit awkward to dry my hands or getting pint of milk out of fridge. mine usually settle between a week to a month. you just got to learn how to cope and keep yourself as comfortable as you can without beating yourself up over it.and most important try to do gentle stretching and keep moving as best you can so you don’t get stiff. and just go with the flow. Keep in touch with this site of your progress. take care and best wishes. Lee

    #46692

    kev76
    Participant

    Hi Lee,Good to hear from u again.About my new flat my support worker is sorting it all out for me so hopefully I won’t need to get the mp on board I just hope it all happens soon as I’m struggling on my crutches and need a electric wheelchair.I do try and do stretches but I’m always in so much pain it’s hard to do.Since joining this site it has started to make me think differently about my pain which can only be a positive thing.Take care Kevin.

    #46693

    lc
    Participant

    Hi Kevin, Good to hear your keeping on top of things, I think your well on the right track so far to getting yourself sorted, sometimes we all need confirmation that what we are doing is the right thing. you sound quite positive in your writing and already doing stuff to better yourself, and getting help with your flat. keep it up and things will work out alright in the end. keep in touch with how you get on with it all .Take care and best wishes. Lee

    #46755

    TJ
    Spectator

    Hi Kevin, feels like what I’m going through but can’t get any confirmed results!!! Here if you need a friend!
    tjblood08 x

    #46757

    kev76
    Participant

    Hi Tj,Thank you for your message I’m sorry that u also are suffering from pain!U said u couldn’t get any confirmed results?Are u under any consultants?Take care Kevin

    #46760

    kev76
    Participant

    Hi All,I am leaving this message as I am very frustrated yet again due to the level of pain that I am in!No matter what i do I can’t seem to relax because my pain is so intense!This is becoming so severe I can’t move on some days i have to just lay there and suffer.Sadly the pain has spread to other parts of my body which is why I am suffering more!Why is life so cruel!I hope everyone on this site is keeping well and it would be great To hear from someone.Kevin.

    #46808

    mouse81
    Participant

    Hi kev76 I want you to no your not on your own I also have been diagnosed with ankylosing spondylitis it’s took 13 years I was told like you it’s DDD and sciatica and today I have done my first injection myself with the help of my nurse I’m on a biological drug called AMGEVITA so fingers crossed it works if not they will change it over take care mouse81.

    #46809

    kev76
    Participant

    Hi mouse81,Thank you for messaging me I appreciate it.If u don’t mind me asking how did u manage to get your own injections and is it possible for me to request them I have had them many times in the past but only in hospital.The trouble I have is my medication just doesn’t really work.Take care Kevin

    #46810

    kev76
    Participant

    Hi Lee,Just thought I’d message u to se how u are getting on as I haven’t heard from u in a while.Just to let u no I have my pain clinic soon on the 31 may hopefully they can reduce my pain I live in hope.Take care Kevin.

    #46811

    kev76
    Participant

    Hi Tjblood08,I wanted to message u again after u messaged me I did message back but I didn’t hear back from u I hope u are doing ok and that u are not in to much pain.Take care Kevin.

    #46812

    lc
    Participant

    Hi Kevin, been a bit Up and down since Xmas really with flare ups seem to get over one and seem to get back to my old self, then it all flares up again ,not sure whether its the weather or me pushing it a bit to much, but a few times now just collapsed where legs just give way. this is what normally happens but its been a bit more frequent. so I’m taking it really slow now, so try not to let it happen again. need to listen to my own advice I give to others I think, HA HA LOL.
    Hope you are getting on ok and not long now for you appt. with pain clinic, lay all your cards on the table and I hope they can sort you out a bit better.what ever they offer you, just try it and give it all a go, this is the only way your going to know what works for you best. Good Luck at Pain Clinic,DId you read the first of two blogs that Helen and myself have done?. take care and best wishes. Lee

    #46813

    kev76
    Participant

    Hello Lee,I am very sorry to hear u haven’t been to good maybe u have over done things.Im really bad again it’s driving me mad I just can’t shake of the pain.As for the pain clinic I’m going to take what ever they offer as I’m getting desperate now.To be honest I didn’t se your blogs im going to have a look now.I really hope your pain eases soon.All the best Kevin.

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