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<blockquote data-quote="Marguerite" data-source="post: 354601" data-attributes="member: 1991"><p>Heather, others have said that getting the pain under control should be the main priority, because the fatigue will improve once you do this. </p><p></p><p>I endorse that, from my own experience. At the moment husband's pain is not well controlled and he's not functioning as well as he should. He said to tell you - it's affecting his sleep badly, and he is aware of this.</p><p></p><p>It's good you're finally seeing the pain specialist. Now, considering how brain-fogged you are (and whether it's primarily from the pain or not, doesn't matter - you are foggy) then you need to begin planning NOW for that first pain specialist appointment.</p><p></p><p>So to make it easy, I'll put this as a to do list for you.</p><p></p><p>1) Take a copy of your medication list and use a highlighter pen to indicate what you currently take, and what you only take now and then.</p><p></p><p>2) Make a list of the problem symptoms, in order of how much they impair you. Put the worst at the top.</p><p></p><p>3) Have a separate list of allergies and sensitivities, including what happens with each one. For example you mentioned Medrol is on your allergy list because it causes you to dissociate - but tat isn't an allergy reaction, not strictly. If you call it that, it confuses the doctor and can lead to dangerous misunderstandings. If you're going to talk doctor-speak to doctors, you HAVE to get it right. Otherwise - you have to define your own terms and be consistent. So the best way to handle this - make that list, and after each medication that is a problem for you, list what it does to make it a problem.</p><p></p><p>4) If you can, write a summarised medical history. Try to keep it to less than a page.</p><p></p><p>Take all of these as copies you can leave with the doctor.</p><p></p><p>Now to your expectations and attitude to health care - I'm probably already preaching to the converted, but I need to emphasise - don't expect instant miracles from any doctor. YOU have to be the person in charge of your own health care, the doctors are your employees. Highly skilled employees, but nevertheless - they are there to help you in your need to be in charge of your own health management. You make the decisions, based on their expert advice.</p><p>Some patients are constantly searching for the "magic bullet" which can cure their problems. But such things don't really exist. The best you can get, is something that can reduce some of the problem. But underneath it all, YOU have to find better ways or alternative ways to do what you need to do, in simply living your life. Don't put your life on hold while you wait to get well; instead, live your life to the best of your ability, DESPITE the pain. At the moment I agree, that seems untenable. I'm not saying get out there and kick up your heels. Just get out there and do what you can, and let go the rest. The day ill come when you can do more. In between there will be days when you have to do less. But it's OK. You're not alone. As long as you LIVE, and don't let yourself stagnate.</p><p></p><p>If we get a cold, we go to bed and rest (at least a little). But after a certain point when you have a chronic illness or chronic pain, we have to get up off that bed and take back control of our lives again. Resting is no longer doing a darn thing to help.</p><p></p><p>This next phase of learning to cope is emotionally painful, as well as physically challenging. But there are easier ways of doing the same tasks and you will learn these, you will find your own mind will help you find cute tricks around the problems.</p><p></p><p>To give you a hand for now, to help tide you over until your appointment with the pain specialist, I have some tips for you.</p><p></p><p>1) If opening packets is a problem, have a pair of kitchen scissors handy. I gave up tearing packets open long ago. We also have various jar openers (including those non-slip matting things). There are lots of fun and lovely gadgets to help. Even putting an elastic band around the lid of a jar, or using washing up gloves, can help you open jars.</p><p></p><p>2) Pain is your current HUGE problem, so try my holiday hot pack. We were taught this trick by a doctor I saw after a fall while we were on holiday.</p><p>To make your holiday hot pack, first get a hand towel. Wet it thoroughly. Wring it out. Fold it neatly so it is the right size and shape. Then put it inside a plastic shopping bag (the crinkly kind of plastic, not the more expensive plastic - you want the freezer bag kind) and microwave the lot until it's hot. Apply it where you need it. As it cools, microwave it again. I find it takes less than a minute to get the whole thing hot enough the first time. Less time on reheat.</p><p>Do not underestimate the benefit you can get from heat.</p><p></p><p>3) Pillows can help a lot when trying to get comfortable in bed. I've got a number of gadgets that help - small cushions filled with mini-beads (like mini bean bags) which are flexible and soft, make great padding. I tuck one under my arm at the moment, because if my arm falls too close to my side then my arm begins to ache abominably and it wakes me up. I also have a couple of soft toy rabbits (very cute) which I bought for Easter a few years ago. They are a convenient wedge shape and although it LOOKs like I'm cuddling a toy bunny, I'm actually using more as cushions.</p><p>And finally, I have a partly inflated ball from the physiotherapist, like a mini basketball, partly deflated. I actually put that under my right shoulderblade, it helps me lie partly on my left side, since my right side is too painful.</p><p>OK, this is what I worked out for me. Other tricks -lie on your side by put a pillow behind your back, another one in front of you (so your arm that is on top doesn't fall across you at too steep an angle, and lead to nerve tingling) and also another pillow between your knees (works for hip pain). Somewhere I also have a full-length body pillow.</p><p></p><p>My head goes on a down pillow which my neurologist suggested I get. It's not that great, but it helps to a certain extent.</p><p></p><p>YOu will have your own tricks that help you, your own places to put pillows. But it really can help you get sleep a bit more efficiently.</p><p></p><p>it's not a cure. But anything that can improve your condition, even a little, or for only a short while, has to be a bonus.</p><p></p><p>As for actual pain pills - I graduated to morphine in 1996, I think it was. But I don't recommend you jump in the deep end with it. I was started on too high a dose, I realise now. If the pain pills sedate you or you feel -high' then chances are, you're taking more than you need. I aim to always have a little bit of pain tapping me on the shoulder, so I can maintain an awareness of where the problems are. But the full amount of pain - I don't function. The morphine helps a lot, plus a certain amount of paracetamol. If only I could take anti-inflammatories! They helped a lot, before my stomach began violently rejecting them.</p><p></p><p>Hang in there. It's nasty, but it does stabilise and you do learn ways to manage it better. </p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 354601, member: 1991"] Heather, others have said that getting the pain under control should be the main priority, because the fatigue will improve once you do this. I endorse that, from my own experience. At the moment husband's pain is not well controlled and he's not functioning as well as he should. He said to tell you - it's affecting his sleep badly, and he is aware of this. It's good you're finally seeing the pain specialist. Now, considering how brain-fogged you are (and whether it's primarily from the pain or not, doesn't matter - you are foggy) then you need to begin planning NOW for that first pain specialist appointment. So to make it easy, I'll put this as a to do list for you. 1) Take a copy of your medication list and use a highlighter pen to indicate what you currently take, and what you only take now and then. 2) Make a list of the problem symptoms, in order of how much they impair you. Put the worst at the top. 3) Have a separate list of allergies and sensitivities, including what happens with each one. For example you mentioned Medrol is on your allergy list because it causes you to dissociate - but tat isn't an allergy reaction, not strictly. If you call it that, it confuses the doctor and can lead to dangerous misunderstandings. If you're going to talk doctor-speak to doctors, you HAVE to get it right. Otherwise - you have to define your own terms and be consistent. So the best way to handle this - make that list, and after each medication that is a problem for you, list what it does to make it a problem. 4) If you can, write a summarised medical history. Try to keep it to less than a page. Take all of these as copies you can leave with the doctor. Now to your expectations and attitude to health care - I'm probably already preaching to the converted, but I need to emphasise - don't expect instant miracles from any doctor. YOU have to be the person in charge of your own health care, the doctors are your employees. Highly skilled employees, but nevertheless - they are there to help you in your need to be in charge of your own health management. You make the decisions, based on their expert advice. Some patients are constantly searching for the "magic bullet" which can cure their problems. But such things don't really exist. The best you can get, is something that can reduce some of the problem. But underneath it all, YOU have to find better ways or alternative ways to do what you need to do, in simply living your life. Don't put your life on hold while you wait to get well; instead, live your life to the best of your ability, DESPITE the pain. At the moment I agree, that seems untenable. I'm not saying get out there and kick up your heels. Just get out there and do what you can, and let go the rest. The day ill come when you can do more. In between there will be days when you have to do less. But it's OK. You're not alone. As long as you LIVE, and don't let yourself stagnate. If we get a cold, we go to bed and rest (at least a little). But after a certain point when you have a chronic illness or chronic pain, we have to get up off that bed and take back control of our lives again. Resting is no longer doing a darn thing to help. This next phase of learning to cope is emotionally painful, as well as physically challenging. But there are easier ways of doing the same tasks and you will learn these, you will find your own mind will help you find cute tricks around the problems. To give you a hand for now, to help tide you over until your appointment with the pain specialist, I have some tips for you. 1) If opening packets is a problem, have a pair of kitchen scissors handy. I gave up tearing packets open long ago. We also have various jar openers (including those non-slip matting things). There are lots of fun and lovely gadgets to help. Even putting an elastic band around the lid of a jar, or using washing up gloves, can help you open jars. 2) Pain is your current HUGE problem, so try my holiday hot pack. We were taught this trick by a doctor I saw after a fall while we were on holiday. To make your holiday hot pack, first get a hand towel. Wet it thoroughly. Wring it out. Fold it neatly so it is the right size and shape. Then put it inside a plastic shopping bag (the crinkly kind of plastic, not the more expensive plastic - you want the freezer bag kind) and microwave the lot until it's hot. Apply it where you need it. As it cools, microwave it again. I find it takes less than a minute to get the whole thing hot enough the first time. Less time on reheat. Do not underestimate the benefit you can get from heat. 3) Pillows can help a lot when trying to get comfortable in bed. I've got a number of gadgets that help - small cushions filled with mini-beads (like mini bean bags) which are flexible and soft, make great padding. I tuck one under my arm at the moment, because if my arm falls too close to my side then my arm begins to ache abominably and it wakes me up. I also have a couple of soft toy rabbits (very cute) which I bought for Easter a few years ago. They are a convenient wedge shape and although it LOOKs like I'm cuddling a toy bunny, I'm actually using more as cushions. And finally, I have a partly inflated ball from the physiotherapist, like a mini basketball, partly deflated. I actually put that under my right shoulderblade, it helps me lie partly on my left side, since my right side is too painful. OK, this is what I worked out for me. Other tricks -lie on your side by put a pillow behind your back, another one in front of you (so your arm that is on top doesn't fall across you at too steep an angle, and lead to nerve tingling) and also another pillow between your knees (works for hip pain). Somewhere I also have a full-length body pillow. My head goes on a down pillow which my neurologist suggested I get. It's not that great, but it helps to a certain extent. YOu will have your own tricks that help you, your own places to put pillows. But it really can help you get sleep a bit more efficiently. it's not a cure. But anything that can improve your condition, even a little, or for only a short while, has to be a bonus. As for actual pain pills - I graduated to morphine in 1996, I think it was. But I don't recommend you jump in the deep end with it. I was started on too high a dose, I realise now. If the pain pills sedate you or you feel -high' then chances are, you're taking more than you need. I aim to always have a little bit of pain tapping me on the shoulder, so I can maintain an awareness of where the problems are. But the full amount of pain - I don't function. The morphine helps a lot, plus a certain amount of paracetamol. If only I could take anti-inflammatories! They helped a lot, before my stomach began violently rejecting them. Hang in there. It's nasty, but it does stabilise and you do learn ways to manage it better. Marg [/QUOTE]
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