What will I be like today?!

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Damned69
Damned69 Member Posts: 55
in Living with arthritis

Being scientifically minded, I like the orderly idea that A follows B. In every other pathology I've had, that's how it worked - there's a set of rules and a natural progression, you knew what to expect and what to do next with a little experience.

Hip OA isn't like that!! If there is a set of rules, it's so highly sophisticated and complicated that they're impossible to learn! You just don't know what you'll get today.

There are SOME certainties:

  1. It's going to hurt! 2. If you move like you're able-bodied, it's going to hurt A LOT. 3. The more you work that hip, the pain will gradually increase and the longer it will take to stop hurting again. 4. If you sit properly for long enough, you won't get any pain but 5. Sit for too long and it hurts more when you move than if you had sat less. 6. The optimum experience comes from moving gently for short periods frequently (which is fine if you don't have a job or responsibilities!)

All fine and dandy. But how much pain you're going to get by doing how much moving, and WHERE exactly it's going to hurt is like British weather. I have found no way of moving guaranteed to minimise the pain. Nothing works for long and some things that worked yesterday don't work today.

Some days when you wake up, you just KNOW it's going to be bad all day - it's complaining right from the off. Others start OK and get worse, sometimes it starts bad and gets better to a point then gets worse again, and just occasionally you feel able-bodied - for about a minute. It's like living with a demon who's definitely going to thump you, but when and how hard is anyone's guess.

Nights are no better. Some nights I sleep OK, others I'm kept awake most of the night. I'm exploring drug options for this one.

I'm having to live now more than ever with uncertainty, and to mentally adapt quickly. If you're not going to go mad, or suicidal, acceptance, adaptability, focus, and knowing pain-management techniques are crucial. Oh and help when you aren't coping.

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  • stickywicket
    stickywicket Member Posts: 27,710
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    Actually, if you like order in your diseases I think you're in luck. OA is a much more orderly beast than RA or any other inflammatory form of arthritis. The latter can flare on a whim at any time and, when it's having a serious bite, will not be pacified by exercises (though ROM ones are still essential) or rest (though the fatigue makes this impossible to avoid). What it craves are more or stronger DMARDS and it wants them now.

    OA, in my view, behaves fairly predictably. If we overdo things it kicks off in a massive tantrum, but rest and exercises will sort it out. Not permanently, obviously. But they will get it back to tolerable or, as an old friend would say 'moderately grotty'. Defining 'overdoing things' is, of course, the tricky bit. We have to get to know our triggers and avoid them as far as possible. If 'possible' is impossible we know what to expect and can prepare for payback. Sometimes payback is oh-so-worth it. Others it's just an added pain. But one which will ease.

    i think it's not a geat idea to quantify pain ie activity (a) will cause pain level (6) as that just makes us concentrate on pain. We find out soon enough, and quite effortlessly, what hurts most and longest and what is best avoided.

    Re your last paragraph, neither OA nor RA has sent me suicidal or mad (though my family would all hoot at the last bit) but I do strongly agree with the rest of the paragraph.

    Versus Arthritis has some good tips here  https://www.versusarthritis.org/about-arthritis/conditions/osteoarthritis-oa-of-the-hip/ 

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Damned69
    Damned69 Member Posts: 55
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    Thank you for a well-thought-out reply. I've no fundamental disagreements with it, just some extra comment.

    Obviously I can only comment from the limitations of my own experience, and describe that experience relative to my own previous experiences. There are of course experiences beyond mine. If you state rheumatoid is worse than osteo, I'm not in a position to argue!

    Being scientifically-minded, I like using the clinician's pain scale to quantify how bad I'm feeling, and relate that to what I was doing, to inform my efforts to keep it as low as possible! When I was a therapist I used a similar scale called SUDS (subjective units of distress) to assess phobias and trauma to initially assess the problem and then subsequent progress and success in the treatment. This does not mean that I am continually focused on pain, but rather my activities. In fact, people undergoing pain management therapy can then see for themselves by using the pain scale that the therapy is working. For example, under hypnosis I was often able to reduce the experience of pain up at around 8 to around 3, by the clients own assessment.

    I will in subsequent articles, be discussing pain management itself, and use pain scales so people can see for themselves that it works. For newbies, the trick is to get them to value the pain retrospectively - "what was your pain level when you were doing that?" People who get the hang of pain management can see their pain reduce actually in the moment.

    I must add that subsequent to onset and diagnosed, my own pain management skills COMPLETELY COLLAPSED! This I attribute to being taken completely by surprise, firstly by having no idea what was going on, then by the bombshell of a life-changing diagnosis and its implications. It's only now, as the initial shock and surprise is subsiding, that I am re-learning those skills.

  • stickywicket
    stickywicket Member Posts: 27,710
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    I don't think it'd be fair to say RA and inflammatory forms of arthritis are 'worse' than OA because it's all so subjective but I do find it more predictable.

    I know nothing about the SUDS scale but I do hate the pain scale for the same reason. Some stoics would admit only to a '3' while a leg was hanging off whereas others find any pain intolerable and would start at '7'. I've never found it conveyed anything useful but I'll be interested in your defence of it.

    Versus Arthritis has a very comprehenive and useful page on pain management which you might find helpful. https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Damned69
    Damned69 Member Posts: 55
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    You are quite right that a pain scale is subjective - a 3 to one person is indeed a 7 to someone else. It doesn't give you any reliable information about pathology - my knee was regularly scoring an 8 when there was nothing wrong with it - the pain was being referred from the hip.

    What it does do is allow therapist/clinician and patient/client to quantify the level of discomfort and any noticeable improvement after treatment. This is the principal objective of an incurable/chronic condition - to make the client comfortable enough for them to live life. So within this limited context it is useful. There is however another factor. If you are associating the pain scale itself with pain, it becomes completely useless, a bit like someone who is anxious about having their blood pressure taken will elevate their blood pressure! If the association cannot be broken, you need to assess pain another way.

    I will definitely check out the link for nuggets I may not yet know of.

  • Henrietta
    Henrietta Member Posts: 44
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    Damned69, I felt no one and I mean no one could possibly understand what it's like until I read your decriptive masterpiece which I concur with 100% and also your attempts at hobbling on another thread. Well done for being able to express the sheer randomness of the whole thing.

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