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 - 16 through 30 (of 51 total)
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  • #46644

    kev76
    Participant

    Hi Lee,That’s good to hear that u think I am on the right track.The problem I have is my pain is the whole spine and also my left hip.Could u possibly recommend any decent electric wheel chairs that would be comfortable for me?Many thanks Kevin.

    #46645

    kev76
    Participant

    Hi Lee,I did message u back but I’m unsure if u received my message as I can’t se it.I asked u if u could possibly recommend a electric wheel chair for me the trouble I have is my pain is in my whole spine and also in my left hip so the wheel chair needs to be comfortable for me.Take care Kevin.

    #46646

    lc
    Participant

    Hi Kevin, when you have the wheelchair assessment they will talk to you about your problems and will advise you on the best chair for you, personally, for me they gave me a voucher so I could pick one of my choice rather than a NHS one which is heavy, but gave me the info of size of seating ect and other aspects, like as it was self propelled, i needed quick release wheels it had to be lightweight and foldable ect. ect. and on seating they gave me a pressure relief cushion seat and padded back cushion. there are lots of things you need to think about, which the assessor will talk to you about, so in your case I would ask about pressure relief seating and back support. also whether your going to use it away so need to think about if your going to get it in a car if thats a case . the assessor will take all your needs and ask you questions so he/she will be the best person to advise you on the best to suit you personally. is that Ok so I would start to think about what you want to use it for whether indoor/outdoor or both and your comfort while in it and long distance use and things like that. let us know how you get on .take care and best wishes. Lee

    #46647

    kev76
    Participant

    Hi Lee,That all sounds great I would want to use it indoors and outdoors if possible I just don’t no what make model to go for?I spoke to a company on the phone called Live well and one of there models what folds up so u can not only use it indoors u can also put it into a car etc.They told me my only problem is that as I am 6 foot 3 tall I would be to tall for a lot of electric wheel chairs?I have someone coming on Monday to give me my wheel chair Assesment I just don’t really no where to start with it all or what I am intitled to?Many thanks again Kevin.

    #46648

    Helen H
    Participant

    HI Kev76
    there are really good gel covers you can get for the seating- I use one for my mobility scooter. My Occupational therapist sourced mine.

    I hope your assessment is really helpful. We all start from a point of knowing nothing re these mobility aids, but there are a lot of folk who can help you get something to suit you.

    Take care
    Helen

    #46649

    lc
    Participant

    Hi Kevin, that was the problem I thought, as i’m 6’2 so had to make sure I had the right width and length in the seat to get proper leg support. and a higher back . but the assessor measured me up, and asked me if i was using for just indoor /outdoor or both and advised me what to look for so I was comfortable. so i knew what to look for .I went to my local mobility centre and would advise you to go there. and they were really helpful in choosing the right chair for you and size, after I told them all my measurements as well. the wheel chair I have is a self propelled one excel G modular and is totally adjustable to fit any one. I am not sure about electric scooters but know they are all different to suit an individuals need.
    My advice is just wait til you have had the assessment,and ask questions on all your concerns and where you stand, they will advise you better on what type to get to suit your individual needs, they might even be able to provide you one,or provide a voucher like i had so i could choose. or point you in the right direction. see where your at after the assessment ,then if you have any concerns I will try to help . is that ok with you. good luck on monday , take care and best wishes. Lee

    #46650

    kev76
    Participant

    Hi Lee,Thanks again for your advice and input that sounds great.I just want this Assesment over with so I can get things in place to make things easier for me.I will let u no how the Assesment goes on Monday.All your advice is much appreciated.Take care Kevin

    #46651

    kev76
    Participant

    Hi Helen,Thanks for your reply I will look into the gel covers for seating and thank you for wishing me well with my Assesment on Monday.Take care Kevin.

    #46664

    kev76
    Participant

    Hi,Lee,I was wondering if u or anyone else have got any ideas to reduce my pain as I have had an extreme flare up and unable to stand up I’m crawling around my flat in agony and really stressed.This is the reason why I’m having the Assesment on Monday to get some sort of wheel chair as I now struggle to stand up due to the high levels of pain.Any advice from anyone would be appreciated.Take care Kevin.

    #46665

    lc
    Participant

    Hi Kevin, Sorry to hear your having a rough time at moment, I found that changeable weather when cold and damp increases my pain levels.So what works for me is I have an electric heat pad which helps,and to keep warm, plus my Tens machine which can mask the pain some what and do relaxation and meditation or do something to distract and can focus your mind on rather than pain.when i have break through of extreme pain (mainly winter time or cold and wet weather),along with my medication, but sounds like your pain is not under proper control in the first place which you need to go back to GP or pain clinic is better, to get your pain under more control or get something a bit stronger for these times when it is worse.. as I have said before what works for one person might not work for another as we are all different to what methods work for us individually. it’s a case of trying different things that YOU find comfortable that lowers your pain some what. but as your condition is along the same lines as mine I found heat and try to relax because while your tensed up it can feel worse. I do feel for you as sometimes I have them days and it’s not nice place to be. Flare ups can be caused by any number of things like change in weather, over doing things without realizing it ,thats why pacing yourself is important and realize this can change from day to day and hour by hour. or try looking under pain relief in blue at top of this page. Tomorrow is a different day hope it’s a better one . take care and best wishes. Lee

    #46666

    kev76
    Participant

    Hi Lee,Thanks for getting back to me.I haven’t been this bad in a while I really am struggling even to move around I can’t even stand up I’m having to drag myself onto my chair.Regarding medication I already where 2 butrans patches that I replace every 7 days I’m using suppositories,Muscle relaxers,Amitriptyline and the list goes on.Nothing seems to work anymore!I do use a heat mat myself I also have a full length spinal hot water bottle but like I said nothing is working at all.Im exhausted and extremely down as u no when pain is this bad u do not no what to do with yourself.Best wishes Kevin.

    #46667

    lc
    Participant

    Hi Kevin, if it’s getting to much then last resort is ring for a ambulance or get someone to take you to a+e . and explain your situation and the meds your currently on seems not to be working at moment. then may be they might be able to help you get some relief. sorry that’s all i can suggest, but defiantly worth going to a pain clinic and get re valuated for pain meds. Hope it all settles soon, take care and best wishes. Lee

    #46668

    AnnieD
    Participant

    Hi Kevin – welcome to the forum! I see Lee’s already given you a lot of great advice!
    You might want to try ‘focus on the breath’ – it’s the simplest and only mindfulness exercise I do, but it seriously works, I remember whaling to my physio on the phone, and they couldn’t understand a word I was saying, they made me do this for 5 mins, and I was able to stop and calm myself down and feel more positive -https://ggia.berkeley.edu/practice/mindful_breathing
    Relaxing your body and calming your mind always helps decrease and help you cope with managing your pain, whether you’re flared-up or in need of ongoing pain management techniques.
    Plus you need to be kind to yourself and this can be easier said than done – I know! I agree a pain clinic will be really helpful, as it helped me understand a lot, and learn various techniques to help too.
    Remind yourself repeatedly that you are strong enough to pull through this and that such episodes are mostly short-lived. It’s learning to have more positive messages.
    I hope things calm down soon for you Kevin – best wishes & take care AnnieD

    #46669

    kev76
    Participant

    Hi,Lee I have called an ambulance many times over the years all they do is give me yet more morphine into my arm and then send me home again.I am waiting for another appointment with the pain clinic just don’t no when I have told them many times that I will take a cancellation but haven’t heard anything back.Why is life so cruel!Take care Kevin.

    #46670

    kev76
    Participant

    Hi AnnieD,Thank you so much for your kind words I appreciate it very much and I will try and focus on my breath.When I get these terrible flare ups I find it extremely difficult to relax and stay calm then I end up completely stressed and exhausted.I will try hard and take yours and lee’s great advice and se how I go.Take care Kevin.

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