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 - 1 through 15 (of 51 total)
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  • #46627

    kev76
    Participant

    Hi my name is Kevin and I am new to the forum.I have been advised that it would be beneficial to me to talk to like minded people in similar situations to myself.I have had poor health now for about 7 to 8 years including poor mobility it started with herniated discs in my lower back with sciatica this pain was and still is living hell!Sadly the pain suddenly turned up also in my neck i have been seen by many doctors and consultants they diagnosed it as degenerate disc disease with osteoarthritis if this wasn’t enough over time I could feel the pain going up and down into the middle of my spine the pain now is constant and never ending.I really have deteriorated and now struggle to walk so I was seen recently by a orthopaedic spinal consultant who has now diagnosed me with ankylosing spondylitis and inflammatory arthropathy.It would be nice to hear from people who are suffering like myself.Kevin.

    #46628

    anniekat
    Participant

    Hi Kevin,

    You were given good advice about contacting people who also live day to day with chronic pain. On this forum we all understand just what you’re going through. It seems as if you’re on your own, but I can assure you that you’re not!

    I’ve had spinal pain for the past 20 years and it was such a relief to find this site. I soon found the help and support I was looking for.

    If I were you, I’d have a good look through all the good advice on how to cope and manage your pain elsewhere on the site.

    I’m sure that once the Bank Holiday is over, other people will turn up with good advice for you.

    All the best and be assured that you’re not on your own.

    Annie x

    #46629

    lc
    Participant

    Hi Kevin, Welcome to this site As Annie says your in the right place also to look at pain relief section in blue at top of page, I too suffer constant pain, lower back and pelvis with nerve pain /damage and arthritis also SIjoint problems for about 23 years now. we on this site do understand and empathize with you. the best thing is to keep moving as best you can, like i go swimming,and gentle stretching exercises, also try and keep your mind occupied and focused on something you enjoy doing . i do wood carving/leather work and draw and paint, as this can help you concentrate on something else rather than the pain your in. also with long term pain you can become depressed and found that CBT and mindfulness works for me. Take care and best wishes. LEE

    #46630

    kev76
    Participant

    Hi Annie thank you for your reply.I now finally have found other people who understand just what I am going through on a day to day basis.Is there anything u could tell me about the contact club please?All the best Kevin.

    #46631

    kev76
    Participant

    Hi Annie thanks for your reply.I now finally have found other people who understand just what I am going through on a day to day basis.Is there anything u could tell me about the contact club please?All the best Kevin.

    #46632

    kev76
    Participant

    Hi lee I think I might have sent you the same message I sent Annie by mistake I got confused with who I was sending to.Thank you for your lovely reply like I said to Annie it’s good to finally find other people who understands what I am going through.Im sorry to hear that u have been in pain for so long do u Mind me asking how have u coped with it for so long?Take care Kevin.

    #46633

    lc
    Participant

    Hi Kevin, there are lots of things that help me cope that is what i have already mentioned above and through CBT and mindfulness I finally came aware that it is total acceptance that this is how I am now and be kind to yourself when having really bad days in a non judgmental way as it is not your fault or any body elses .and do meditation and relaxation regular, but found you need to do something that gives you a purpose that you want to get up for. for me it is my art work, swimming, and also do my family tree, and do things that make me happy and enjoy doing, as and when I am able, I also use a Tens machine when nerve pain breaks through my regular meds. I have tried and gone the alternative root and take as least meds as i can as i do not like being zombified and just existing. and also this site where i can comment and talk to others has also been a bit of a life saver and realized I am not alone and can talk to people who understand and can truly know what your going through. what methods and medication work for one person may not work for you so its a bit of trial and error to what methods of medication and alternative medicine works for you. Hope this helps somewhat . take care and best wishes. Lee

    #46634

    lc
    Participant

    Hi Kevin, forgot to mention, that once you have totally excepted that this is how you are now and stopped having mental battles with yourself over how you are and what you once was and Pace yourself during the day you will find that over time it does get less hard and you may feel a big weight off your shoulders and things become a little easier mentally but rest assured it is a big hurdle to get over. but keep fighting on and it will happen. the main thing is you need plenty of resilience.also keep in touch with this site as we are all here to help each other.and truly understand what your going through. as over the years some of us have all been there at some point. take care and best wishes. Lee

    #46635

    kev76
    Participant

    Hi Lee,I’m glad u have mentioned that as I haven’t fully come to terms with things.Hopefully now I have found this site it will help me cope with things a lot better.Could u possibly recommend anything else on this site.Thanks Kevin.

    #46636

    lc
    Participant

    Hi Kevin, the links in blue at top of page try reading some of them like in resources link there is a part about relationships you may find helpful and ideas under the link pain relief, as living with pain can effect all areas of your life not just you but the way you handle your pain can effect relationships with others in many ways as I found out after doing CBT and a mindfulness course for which has for me changed the way i think and react to situations and how i react to others to, even though I am in pain. mindfulness is a way of life and by meditation, and relaxation can help and put things in perspective, well it has for me. but some find it difficult to focus on it and usually get stuck or seem to not progress ,it does require a lot of effort from you and persistence. I teamed up recently with another member on this forum called Helen she does blogs and has just completed a mindfulness course which she has completed and now fully understands what I have been trying to explain to her for some time. Helen is in the process of writing 2 blogs for which when completed will post. if you click on the search forum top right and write in the box breathworks mindfulness for health course then click search button , it will lead you to the post. or at the start and on the posts, page scroll down to the post and can read what has been going on. also there are links on that page about her experience of it. for which you may find helpful. living with pain can cause a lot of other problems and with other daily struggles on top can also lead to depression for which many on here have been through including myself I was in a very dark place, hence the counselling CBT and mindfulness also this site which has pulled me through. hope all this helps somewhat and if you need to, keep asking questions, I will or someone else will help to the best of our knowledge and experience. we all have different problems but end result is pain and the things you go through with pain is all similar. take care and best wishes. Lee

    #46637

    lc
    Participant

    Hi Kevin, you asked about the contact club, it is basically there to be a bit more personal friendship so you can browse members and personally email them. but I found that you can build a relationship over time with members just by posting on the forum.
    like myself and Helen was emailing each other so we can discuss the blog that Helen is doing before others get to see it.
    hope this helps , take care and best wishes. Lee

    #46638

    kev76
    Participant

    Hi Lee,Thanks again for all your lovely advice I do appreciate it.I am so happy to have found this site as I was and still am in a dark place.Its great that I have finally found other people who who totally understand what I am going through on a daily basis.I definitely will try some of the things that u have recommended to me like meditation and relaxation as I am permanently stressed with it all!I just hope in the future I can come to terms fully with things and that I can somehow get my pain under control.Many thanks Kevin.

    #46639

    lc
    Participant

    Hi Kevin, If you can manage to get to GP, or arrange a telephone call from GP you can ask them to refer you to do CBT and Mindfulness course as your struggling to cope mentally. which should be free, I think this will help you mentally if your still in a low mood and struggling mentally. the first couple of sessions with mindfulness i thought a bit hippy dippy and nearly left as this is just a stage to get you to focus your mind on stuff. but by week 3 it all started to come together and goes quite deep about how you feel and reactions to situations ect. as the weeks pass, but you do need commitment and perseverance and want to get better ,just go with an open mind. and by the end you will get it. but at the end of the day it’s all up to you to help yourself and want to be better, regardless of living with pain, which like me will be for the rest of my days. it also helped me accept that this is who i am now. there is no right or wrong in the way you think while meditating but it can make you aware of negative/positive thinking. you are in a small group with others with a person who teaches it and can give you guidance also help with any distressing thoughts. if you go the GP/NHS root, or like Helen done, pay for it online course as she could not manage to get to GP and done it at home on computer in her own time she still got guidance individually and help but you need to contact them. I think she paid about £55 for the whole course which you can refer back to any time.but just focuses on living with pain . while the NHS root it covers many angles of difficulties. being stressed and agitated/ tensed can and will cause you more pain than you really are in. I learnt that to be a fact. Like I say at the end of the day it’s up to you what you do.I hope you get your pain under better control soon. keep in touch ,take care and best wishes. Lee

    #46640

    kev76
    Participant

    Hello Lee,That all sounds great but the trouble I have is I can now hardly stand up due to the pain so I hardly leave my flat.I am actually waiting for a wheel chair Assesment so I can get back some of my independence then I could do the course no problem.My mobility is terrible now so even trying to do the simplest of things is very difficult for me.Hope fully once I have a wheel chair it will transform my life.Take care Kevin.

    #46642

    lc
    Participant

    Hi Kevin, yes I understand that, I struggled for about 3 years before i finally gave in and had OT assessment have different aids around the house, and now use a wheel chair when out , it has made it easier, i got a self propelled one as my pain is from lower back and down. and found it keeps me fitter than struggling on crutches and helps keep my pain lower than on crutches as well , so i can pace myself better and last longer on days out. gave me back some of my independence. you sound to me on the right track for helping yourself. which is great to hear. Good luck with the assessment, all the best wishes and take care, Lee

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