Spine and hip pain new diagnosis spondylitis and inflammatory arthropathy

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This topic contains 62 replies, has 8 voices, and was last updated by  kev76 4 weeks ago.

Viewing 15 posts - 46 through 60 (of 63 total)
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  • #46814

    Lc
    Participant

    Hi Kevin, I find heat and then put Tens machine on, then do some meditation for about 40 mins ,then after that go and do something to distract my mind from it like family tree as I can do that lying down or read, or do some colouring ect anything that keeps you focused and concentration on rather than keep thinking how much pain I’m in. then tomorrow is another day and hope it’s a better one. if not, do it all again just mix things up a bit, so I don’t feel to much like a robot. managed to have a swim today which was great while in there. but feeling it a bit now so off to have a lie down and read my book Fire and Blood its about 300 years before the game of thrones. getting quite stuck into it the last week or so. Hope your pain settles soon. take care and best wishes . Lee

    #46815

    mouse81
    Participant

    Hi Kevin you need to see a rheumatologist to be given the injections I went to one hospital for years they never did a thing so o sort a second opinion at another hospital had another scan and I was granted the biological therapy which are the injections have a read about humira mine is a biosimilar AMGEVITA but they said they will change it if it doesn’t work lots of people say theses are life changing drugs so please don’t give up change hospital or ask docs to send you good luck mouse81

    #46816

    kev76
    Participant

    Hi Lee,I read your blog it was really interesting and your art work is amazing.I have got a tens machine but it doesn’t really work to well for me.Thanks again for your lovely advice I really appreciate it.I hope u feel better soon.Take care Kevin.

    #46817

    kev76
    Participant

    Hi mouse81,I am due to se the rheumatologist on the 4 June I will mention to them then I have had many injections Over the years I just don’t no what they were called.It would be nice to find a injection that works well so I can come of all this medication.Thank you for your advice take care Kevin

    #46818

    Lc
    Participant

    Hi Kevin, Thank you for that. when Helen gets the other one up you’ll see more of what I do. The Tens doesn’t take my pain away or make it better but masks the pain so my brain gets the buzzing and helps me focus away from pain rather than just pain . well its not for every one, we are all different otherwise it would be a boring world to live in.
    mouse81 is your injections a bit like using your own body blood ect mixed with another chemical to help you battle and help with pain with AS? as you mentioned bio something in an earlier post as I had something like that a number of years ago. but it wasn’t really working for me. Hope they have come a lot further since and it works well for you to lower pain levels.please keep us informed to whether it works for you. anyway take care and best wishes. Lee

    #46819

    kev76
    Participant

    Hi Lee,I will let u no how I get on I have the pain clinic then the rheumatologist appointment only a few days after.Take care Kevin.

    #47048

    kev76
    Participant

    Hi All,I don’t really no where to start it has been a while since I was on the forum.I am going through an extremely difficult time with my pain as I’m having yet another flare up where I can’t even stand up to make things worse my medication isn’t touching the pain.I have never felt so low I have tried a few things to take my mind of the pain but nothing seems to work.If anyone has any advice it would be much appreciated.Hope everyone is ok on the forum.Kevin

    #47049

    Lc
    Participant

    Hi Kevin, Sorry to hear your still struggling. It is one of those cases like me, that you need to pace your activities to stop flare ups ,but sometimes flare ups can happen spontaneously without really knowing what caused it. even I find pacing a struggle sometimes and over do things. which causes a flare up but also changes in weather from hot to damp and wet.
    Firstly go back to GP or pain clinic for a review to get your pain under control if the current meds are not working for you. and for mental health, if you have not already done so get referred or self refer for CBT and mindfulness course but defiantly CBT as this should help you mentally to cope. you should be able to find your local surgery that does this and give them a ring,or GP to refer you. it certainly got me out of that deep black hole. but you do need a lot of resilience, and perseverance to try and help yourself as well as CBT and mindfulness is no quick fix, but you need to want to change from where you are at moment. dont try it yourself online unless absolutely committed but it is easier with a therapist to guide and point in the right direction you with your specific needs.
    Did you manage to get a new place to live to make it easier with your wheelchair?
    I kept advising HelenH about CBT/ Mindfulness. I t took Helen a while before she took my advice and wishes she had done it earlier,but know understands exactly what I was talking about. but we all have to do things at our own pace. Hope you get your pain under some control soon. Take care and best wishes. Lee

    #47060

    kev76
    Participant

    Hi Lee,Hope u are well.All I can say about my pain is I don’t really get any good days anymore I seem to be always in pain I do pace myself but nothing seems to work.I still use patches and various other medications including depositories nothing is working I have got the local MP on side and I’m fighting for CBD oil I will let u no how that goes.I am having counselling at the moment as I really am in a dark place.I still haven’t been moved as I was assessed wrong and put in the wrong band however this is now sorted and I am now bidding for a new property.Take care Kevin

    #47062

    Lc
    Participant

    Hi Kevin, Oh Dear thats not good, I am in constant pain every day but it does vary from manageable to aaahhhh. It is good that you have things moving with your house situation even if it is slow. If nothing yo are taking seems to work I would defiantly go back to Pain clinic to get review for you pain relief. as this is not helping what so ever.
    I tried counselling it did help a bit but didn’t sort out all my problems, it is CBT you need,( Cognitive behavioural therapy) for living with pain as it changes the way you think about it and to cope and deal with difficult times,from outside situations and stresses, as dealing with outside difficulties as well as dealing with pain is putting you through this difficult time. I have been there in a really dark place and suicidal thoughts, which are really strong, and no-one understands it unless you been there, which is why you need the correct help. it was only because I am very resilient and wanted to be better and kept fighting on that helped me pull through also with the right people and help around me. no-one knows what your thinking unless you tell them as just by looking at you they think your ok, which still frustrates me even today by saying things like oh you well. aagghh. LOL.It took me about 6 yrs from start to be how I am today, but only know seems like 5 minutes as know it all seems a haze that i went through like just a bad dream. Keep strong and fighting Kevin and you will get to better days. and keep in touch regular with this site as we all know what it is like and most of us have been through this ourselves at some stage, so we do understand. you are not alone in this Ok and you can pull through it all. you are a lot stronger than you think. take care for now and best wishes. Lee

    #47063

    kev76
    Participant

    Hello Lee,Thanks again for your kind message I have been in touch with the pain clinic but they said they cannot offer me anymore injections as I have had so many in the past according to the pain team there isn’t anything they can offer me for my pain so they have referred me on to the community pain team not quite sure what they will offer.I will look properly tonight for the cbt what u recommended to me I just hope this works in some way.
    Take care Kevin

    #47064

    Lc
    Participant

    Hi Kevin, Sounds like they are pushing you round in circles as the community pain team offer things for people living with chronic pain like pain support ,pain action, pain clinics/management and things like the pain society, also support groups. and talking to your Gp /pain clinic on how you can manage your own pain, things like what I have already told /advise you like CBT/ mindfulness and other alternative therapies.so if you have not already tried something they have not already offered, then tell them what you would like to try like CBT/ Mindfulness and could be linked to a support group like what your already doing on this site. sounds like your pain clinic doesn’t know what else to do for you, so your just going round in the system. but some of the stuff does help and works some what, its finding what methods and meds work for you best.
    take care and best wishes Kevin I wish you well. Lee

    #47140

    kev76
    Participant

    Hi Lee,I hope u are doing ok.I wanted to thank you again for all your lovely advice in the past it meant and means a lot to me I now no what u were saying I now realise that I never totally accepted that this is now how I am on a positive I now listen to everything on this app mindfulness is brilliant and I have started to meditate and I am now having regular counselling which I am finding really helpful.I finally have had my housing band changed to a band A so should be moving somewhere more suitable soon.
    All the best
    Kevin

    #47142

    Lc
    Participant

    Hi Kevin, I appreciate your gratitude and thanks, It means a lot to me,This is what this site is about trying to help others get through difficult times as we all have them at times. Sometimes it takes a while to totally accept that this how I am and just take the rough with the smooth. I posted the other day about a Good book I just read.Have you read the post and if you get the chance to read the book do so, I think you’ll appreciate it. anyone suffering or dealing with depression and pain of all kinds I think is a must read. It is brutally honest which is a must I think that we have to be honest with ourselves and take the facts that this is how we are. and no pill or magic wand is going to change it. and once you have total acceptance of yourself and how you are, life does become a tad easier despite living with pain.
    Glad to hear your sorting out your housing situation. and hope you get somewhere soon that is going to make life a bit easier for you.
    I’m doing Ok ,SIJoint playing up a bit just recently don’t know whats worse back or si joint pain seems about the same but its the nerve pain from them that overrides everything . take care and best wishes also keep in touch. Lee

    #47162

    lizzielynx
    Participant

    Hi Kevin.
    we sound like we have experienced the same my injury related to me being crushed under a library shelving stack leaving me with damaged discs and sciatic nerve had to be restricted which was and is a horrendous thing to deal with. I often just feel bereft at what my life could have been and having to try and recentre myself. I had s spinal fusion after my accident and unfortunately it had snapped so I am currently having to come to terms with more operations. sending you hugs Kevin your never alone. xx

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