Hello

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zenon
zenon Member Posts: 5
edited 28. Nov 2023, 14:05 in Living with arthritis
Hi,

After 3 years of being told I had knee OA, a savvy consultant in the local NHS determined it is in fact Hip arthritis. Unfortunately I have reached a stage where I will need two arm sticks.
Longer term I am not sure what treatment will apply, but a hip replacement is likely.
My main problem at the moment is pain from ankle to hip. The pain killers have limited effect.
I have a major issue with sleeping, with aching chronic pain and very painful short term spasms of stabbing pain starting in my ankle and shooting up to my thigh, feels like nerve related. frequently takes me 3 or more hours to get to sleep.
I would appreciate any advice on how to cope with this or reduce its effects.

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi zenon
    Welcome to the forum, sorry you are in such a lot of pain,I still remember the pain I had before I had 2 knee replacements and a hip replacement after that no pain after 6 weeks it was bliss,you have yet to get there and diagnosis and results can be slow, I went to a pain Clinic at my surgery where they give ways of controlling the pain to a level that you as an individual can bear , you could ask at your surgery if they have one it might work it did for me until I had my surgery. Everyone on the forum understands about pain as we all have various forms of Arthritis. The most popular forums are Living with Arthritis and Chit Chat.
    Hope all goes well Christine
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, I have OA in both hips, both knees, both ankles, my wrists and one shoulder plus another kind of arthritis in my toes, knees, elbows and hands. I began aged 37 and am now 60. I was refused new knees when I was 52 on the grounds of youth. :lol:

    How to cope with pain? Well, over the years I have worked out what is best for me. I take a small but regular dose of pain relief, not because it does much but it does dull the outer, sharper edges of the pain allowing me to get on with stuff. I have 30/500 cocodamol and am currently taking ten tablets over a 48 hour period. This gives me room to increase when things are aggravated. Mental diversion and stimulation is key for me, if I focus on the pain it hurts more, if I don't it doesn't.

    Good quality sleep is a thing of the past but I do what I can to make it a more pleasant experience. I take two cocos about an hour before I settle, I have invested in a good quality mattress, 100% linen bedding, duvets and pillows and, for many years, have slept with a pillow between my legs: I am a side sleeper so the pillow both cushions the painful joints against each other plus keeps my upper hip in a better position. Pain breaks through every 90 minutes or so but I have found ways to bore myself back to sleep.

    I have used walking aids for years, primarily to ensure I walked better and to ease the strain on my damaged joints thus slowing the spread to other areas. You seem surprised that OA in the hip is the root of your knee trouble but I'm not: once one joint is affected we unconciously change the way we stand and move to reduce the pain in that area, thus throwing other joints out of kilter. I can and do walk unaided for short distances, sometimes carrying weights, to stimulate all body muscles but never when in town. I find my seated rollator ideal for that as I can walk better and further, carry shopping and have a rest when needed. People can also see I am compromised and more often than not move out of the way. I work with a personal trainer too on muscle resistance and strengthening and joint ROM exercises, which develop the work I have done in the past with physios. Exercise is daily and comes in many guises.

    Hope this helps. Good luck and let us know how you get on. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi Zenon.

    Just to add a little to this thread. Our website has a good selection of information on managing pain which can be found by searching. There is also a specific section “managing your pain” which can be found here:

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

    Best wishes
    Brynmor
  • zenon
    zenon Member Posts: 5
    edited 30. Nov -1, 00:00
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    dreamdaisy wrote:
    Hello, I have OA in both hips, both knees, both ankles, my wrists and one shoulder plus another kind of arthritis in my toes, knees, elbows and hands. I began aged 37 and am now 60. I was refused new knees when I was 52 on the grounds of youth. :lol:

    How to cope with pain? Well, over the years I have worked out what is best for me. I take a small but regular dose of pain relief, not because it does much but it does dull the outer, sharper edges of the pain allowing me to get on with stuff. I have 30/500 cocodamol and am currently taking ten tablets over a 48 hour period. This gives me room to increase when things are aggravated. Mental diversion and stimulation is key for me, if I focus on the pain it hurts more, if I don't it doesn't.

    Good quality sleep is a thing of the past but I do what I can to make it a more pleasant experience. I take two cocos about an hour before I settle, I have invested in a good quality mattress, 100% linen bedding, duvets and pillows and, for many years, have slept with a pillow between my legs: I am a side sleeper so the pillow both cushions the painful joints against each other plus keeps my upper hip in a better position. Pain breaks through every 90 minutes or so but I have found ways to bore myself back to sleep.

    I have used walking aids for years, primarily to ensure I walked better and to ease the strain on my damaged joints thus slowing the spread to other areas. You seem surprised that OA in the hip is the root of your knee trouble but I'm not: once one joint is affected we unconciously change the way we stand and move to reduce the pain in that area, thus throwing other joints out of kilter. I can and do walk unaided for short distances, sometimes carrying weights, to stimulate all body muscles but never when in town. I find my seated rollator ideal for that as I can walk better and further, carry shopping and have a rest when needed. People can also see I am compromised and more often than not move out of the way. I work with a personal trainer too on muscle resistance and strengthening and joint ROM exercises, which develop the work I have done in the past with physios. Exercise is daily and comes in many guises.

    Hope this helps. Good luck and let us know how you get on. DD
    Thanks for your reply. My problem seems trivial compared to what you have to endure. I will try the pillow and take a look at how and when I take pain killers. As an aside I am 72, going on 73.

    Ken.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Anything that causes long-term, chronic pain is not trivial, I was hoping to show that I could understand and relate to your current circumstances. Arthritis is an equal-opportunities disease, it cares not for age, gender, class, religion etc.: the youngest person I have come across on here was eighteen months old. :shock:

    Of the ten million or so arthritics in the UK the majority have OA and I think its ubiquity can work against it. Thanks to my genetic inheritance I was always a candidate for my psoriatic arthritis but my OA diagnosis came as a shock, I had not realised one could do the double. It can be hard to alter one's mindset about using aids but my view has always been they help me do more, go further and ease the stress on my better joints.

    Pain dullers are useful but they are even more ineffective if the pain is allowed to get a hold. I find that two of my tablets every six to eight hours is enough for me to stay on top of it rather than it climbing all over me. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Hi zenon and welcome from me too. I can beat you just – I'm 73 going on 74 :lol:

    It's actually not at all unusual to feel pain in 'the wrong joint'. When one of my knee replacements packed in all the pain (and there was a lot of it :roll: ) was in the ankle below. The ankle specialist, to whom I was referred, got very excited about the x-rays. “Look at this” he said, showing me my ankle. It looked fine. “Now look at this” he said, showing my knee. It was way out of position. The outcome was a knee revision and a painfree ankle.

    I have found, over very many years of arthritis, that my two main weapons are distraction and exercise. If no-one has referred you to a physiotherapist then ask. We often don't feel like doing the exercises but, believe me, they really help to keep muscles strong, and strong muscles support weak joints so that they hurt less.

    I'm not a big believer in pain meds but I do take a couple of co-codamol going to bed as it saves me having to get up in the night to take them. If whatever pain relief you take isn't helping at night tell your GP. There are different types but I do think the less we take overall the better they work.

    One of my hip replacements is now completely shot but I'm a bit of a dangerous candidate to operate on. A tip given to me by my hip surgeon was to sleep either on my back or on the side of the bad hip. It's when the bad hip is 'on top' and so not anchored that it can get into dangerous positions. It works for me. I hope it will for you too.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • zenon
    zenon Member Posts: 5
    edited 30. Nov -1, 00:00
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    Hi zenon and welcome from me too. I can beat you just – I'm 73 going on 74 :lol:

    It's actually not at all unusual to feel pain in 'the wrong joint'. When one of my knee replacements packed in all the pain (and there was a lot of it :roll: ) was in the ankle below. The ankle specialist, to whom I was referred, got very excited about the x-rays. “Look at this” he said, showing me my ankle. It looked fine. “Now look at this” he said, showing my knee. It was way out of position. The outcome was a knee revision and a painfree ankle.

    I have found, over very many years of arthritis, that my two main weapons are distraction and exercise. If no-one has referred you to a physiotherapist then ask. We often don't feel like doing the exercises but, believe me, they really help to keep muscles strong, and strong muscles support weak joints so that they hurt less.

    I'm not a big believer in pain meds but I do take a couple of co-codamol going to bed as it saves me having to get up in the night to take them. If whatever pain relief you take isn't helping at night tell your GP. There are different types but I do think the less we take overall the better they work.

    One of my hip replacements is now completely shot but I'm a bit of a dangerous candidate to operate on. A tip given to me by my hip surgeon was to sleep either on my back or on the side of the bad hip. It's when the bad hip is 'on top' and so not anchored that it can get into dangerous positions. It works for me. I hope it will for you too.
    Thanks for your reply.
  • Jackie47
    Jackie47 Member Posts: 108
    edited 30. Nov -1, 00:00
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    Hi. For a while I thought it was my knee. Blooming painful and weak. During a routine chat with orthopaedics I mentioned it although not there for that. You’ve guessed it it’s the hip not the knee that needs replacing. I’ve already had the other side done so in April going to have this replaced. Was given naproxen but it made me giddy so stopped that. I have a very low tolerance to painkillers so it’s 8 paracetamol daily plus Fenbin gel I rub into the knee. Over time it’s working but I’m stuck indoors a lot unless going out in the car. Wishing you well.
    .