How do live and deal with this unbelievable pain

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Hello I had osetoarthris for 3 years now and was only diagnosed early last year, I'm soon to be 36 and this is just unbearable I have never experienced anything like this, I used to enjoy life and now I dread each and every day, so I have it in my hands, feet, ankles, chest, elbows and back and also have a deformity in my left hip that gives me excruciating pain every day to the point I can barely walk, i can't take any NSAIDS due to a very rare condition of familial adenomatous polyposis, so anything that causes intestinal bleeding or any gastro problems I can't take as I have had a total collectomy, also I am woken several times a night I wake up because of the immense pain throughout my body, even as bad as not being able to bend my fingers, the only painkillers I can take is Codeine Phosphate 30mg, which don't do much and sometimes give me migraines and have asked the doctors for stronger dosage and explained why I can't have any others and explained the pain I am in and still won't change their minds, so how does everyone deal with this pain as it's only getting worse I can't use my hands no more or walk, nothing !! But this pain is unimaginable!!

Comments

  • Sharon_K
    Sharon_K Member Posts: 460
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    Hi Emmajm84

    welcome to the forums, I am sorry you are having such a difficult time right now with your pain. I think we can all related to those times when it is totally out of control. You obviously have added difficulties of not being able to use certain medications which makes life a lot more difficult. I am sorry to hear your doctors don't seem to be hearing you right now.

    It might be an idea to keep a bit of a pain diary to help to explain things more clearly in terms of the extent to which it is affecting your life. We also have a great section on the website about managing pain here which gives a good over view.

    you might also find either a heat pad or ice wraped in a tea towel can help to bring the pain levels down. Quite a few people use wax baths to help with their hand pain but I am sure our menbers will be able to give you some other brilliant ideas. The important thing to remeber is that you are not alone, come and chat here any time and let us know how you are getting on

    Best Wishes

    Sharon

  • Airwave!
    Airwave! Member Posts: 2,466
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    Pain is the factor we all share on this forum. There’s a lot of information on here on the forum or directly from the VA website, try the helpline? Ask your GP for a referral to the Pain clinic.


    its a grin, honest.

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
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    I take minimum pain relief in terms of quantity, keep myself distracted from it, exercise suitably and accept it as a fact of life. The pain began in 1997, fifteen years or so later the arthritis was so widespread (and had become two kinds) there was nothing that didn't hurt so life became easier. DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Mikey
    Mikey Member Posts: 1
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    Hi....I’m a 58 year old male , I had a road traffic accident while at work in January 2015 , I was a fully fit and mentally stable fun outgoing person , had a new fantastic job as a gas engineer , 6 months after my accident everything when completely chaotic, I had memory issues, my right leg and then my left leg had become arthritic...6 months after an accident ?.....having several x rays , then c scans over the next years up to 2017 my legs became unbearable with pain , suffering with extreme osteoarthritis...bone on bone , all within a short period of time , I have to wear leg braces so I can walk ...I suffer intense pain 24/7 ....I’m still trying to come to terms with such a life change .....I live alone ...sometimes this life with arthritis is unbearable....how can a person’s live change so drastically....I’ve seen lots of specialists ....but nothing can be done they tell me .

  • chrisb
    chrisb Moderator Posts: 691
    edited 25. Apr 2020, 11:12
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    Hi @Mikey

    Welcome to the forum.

    Sounds like you've had a really rough time since your accident. No doubt your life has changed dramatically posing both physical and mental challenges.

    If you haven't already done so it may be worth your while following the 'Managing your pain' link referred to earlier by Sharon in this dialogue.

    Please also see Airwave's suggestion to ask your GP for a referral to a Pain Clinic.

    If at any time you feel that talking to our helpline would be beneficial then they can be contacted on 0800 5200 520, or email helpline@versusarthritis.org (Mon - Fri 9:00am – 6:00pm).

    Best wishes

    ChrisB (Moderator)

    Need more help - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • Babs55
    Babs55 Member Posts: 6
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    Hi Mikey, such a short time for that huge change you describe. I too was very active, my work was physically demanding then I too had an accident which has now resulted in bone on bone extreme OA. in both knees. I walk only just, with extreme pain. They dont tell you how this effects you mentally and emotionally. How difficult it is going from being active to immobile. Ive no answers for you. Just to let you know, reading your story really related to mine and at least you can know your not alone in your pain.
  • Jules70
    Jules70 Member Posts: 65
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    Hi Mikey

    welcome to the forums 😊

    I have Oesteoarthiritis in both my knees and struggle with walking long distances and going up down stairs .

    Im on A waiting list for knee replacement but because of 🦠it is on hold at moment .😥

    I had sudden onset of symptoms with no symptoms whatsoever up until 22 months ago started with bad pain out of blue .

    ive had to give up my job for now ,as I’m unable to manage with pain my mobility severely affected until i get my surgery .

    I am 50 years Of age, up until 22 months ago was fit and well and worked full time in care sector .

    I understand how you feel, as I have am going through similar thingS.have good days bad days and if I over do things I pay for it the next day .

    I usually try pace myself now ,not do too much have Rest in between chores .

  • celtic
    celtic Member Posts: 32
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    Hi may I share this with you all, I suffer with OA in the ankle right knee both hips ,left shoulder, left hand and a little in the right hand, about 12 months or so I started to use Hemp Gel and so far have relief in my ankle, knee and shoulder and a little in the hips and left hand, I know it will not cure OA but it has helped me.It is expensive £18, a tub and I use 2 tubs a month but I think it is worth every penny. My daughter tried it but because it didn't work within a week she stopped even though she knows about the relief I have had from it. If you decide to try it give it a month and see how it is for you, it may not be suitable for you, but I will try anything to get relief.

  • jaja
    jaja Member Posts: 135
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    Hi

    just a thought... About your pain relief... And I know nothing about your medical condition... But have you considered NSAIDs through a suppository??

    i know from experience that these do not often effect the gut given by this route and are more effective as pain relief ...

    Very expensive so doctors avoid suggesting them

    JaJa

  • Clees1953
    Clees1953 Member Posts: 3
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    Hello,

    I have had osteoarthritis for over 32 years, I believe As the result of having hypermobile joints. I wasn't aware of this until my surgeon saw my feet were pointed down when I was in bed. My knees used to bend backwards till I had bilateral total knee replacements at the age of 56. I have also had two major reconstructive surgeries to my spine. My children have grown up with me like this, so it is just normal to them. I take cocodamol, amitriptyline, alendronic acid and calcium. I have reached a stage where the only joints not hurting me are my hips and my left elbow. I try to live a normal life but I can't walk, bend, lift, kneel or squat and I have reached the point where I think I would rather be dead than live like this. I am in so much pain. I have never reached out to a forum like this before😓

    Christine

  • Annj
    Annj Member Posts: 59
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    Hi Christine,

    Welcome to the forum, good to have you with us and well done for taking the step to reach out. I'm sure you will find our forum members knowledgeable and understanding. It's a good place to ask questions or just vent about how you're feeling among others who share similar experiences.

    It sounds as though you've had a long time living with this and assimilating it into your life, but it's terribly difficult to deal with if you can recognise that your condition is steadily worsening. I am sorry to hear that you are feeling so desperate at the moment. Have you been able to talk with anyone professional about the mental toll your physical health is taking on you? Sadly, the NHS aren't particularly good at providing much in the way of talking therapies, above and beyond a short course of sessions. But if you haven't already accessed the limited provision that's available it might provide some help in dealing with how you are feeling. If private counselling sessions are an option for you they may be worth the investment. We do have a telephone helpline at Versus Arthritis, if you feel that talking with someone may help. It's free to call and available Mon-Fri 9am-8pm

    I'm assuming as you've had such a long history of arthritis and surgeries that you will have already been referred to your local pain clinic at some point, but if you feel that things have significantly worsened for you it may be worth asking to be referred.

    With best wishes,

    Ann

  • Clees1953
    Clees1953 Member Posts: 3
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    Hello Ann,

    Thank you for your reply. Yes, I have been through all the usual routes and the woman from the pain clinic made me want to give her a slap. She only wanted to talk about pain 'perception' as a psychological phenomenon. Given that I told her that I am a psychologist myself, I felt this to be very patronising. I have ruled out further surgery to my spine, as I think the limited benefit and longer recovery time, given my age of 67 would not be worth it. My knee replacements have been very good, but I am in so much pain with my back, hands and feet that I really don't want to move, even though I know that I must. I had a brush with stage 3 breast cancer five years ago and recovered from a very aggressive tumour far more easily than this constant pain. I will try the helpline, thank you. I can't really talk to my children, as they just see it all as 'normal' for me. I do sometimes wish that the cancer had carried me off, which I recognise as being very unhelpful, but I am so very tired of it all.

    many thanks

    Christine

  • YvonneH
    YvonneH Member Posts: 1,076
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    Hi Christine,

    It's not unhelpful at all, it's a sign of how you feel. Are the circumstances of the lockdown affecting how you feel too? Lots of people are feeling either that they wish they could have time on their own rather then all stuck together in the house or they are lonely, both of which are sad.

    You have a wealth of information on managing pain, coping with children and having a long term condition and probably many other things I can't imagine. Would it help you at all to look around the forum and see if there were any fellow members you could offer hints and tips or advice to? You can take a look at Val's café or the chit chat zone for cheery conversation on any subject you care to name - if it's not there we can always start one.

    I find it inspiring that you have managed to come here and join us to share what life is really like for you. Thank you for doing that (((((()))))) virtual hugs, very gentle ones

    Yvonne x

  • Trish9556
    Trish9556 Member Posts: 549
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    Hot Hands are very good for hand pain - quite cheap in the shops but if you google them there are some very good offers around including full boxes as you see in shops for a fiver when I last purchased them but otherwise microwave heat packs/teddy bears etc but the packs do last for around 12 hours so in my opinion the best option

    stay safe, Trish