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<blockquote data-quote="Marguerite" data-source="post: 433172" data-attributes="member: 1991"><p>Jena, get that pain under control. Major target. Next, see a pain clinic for management. Or some pain specialist somewhere. You need a regime that is safe as well as effective.</p><p></p><p>All drugs have problems. Anything that is going to have a therapeutic benefit also has a good chance of side effects. It's just the way it is. You have to find something you can tolerate, that works.</p><p></p><p>NSAIDS - if they work, that is great. Watch your blood clotting, though. They helped me a lot, then I developed sensitivity to them and can't take any of them now.</p><p></p><p>Opiates - not necessarily the big ogre you might think, although if your dose has you "feeling loopy" you're taking too much for your level of pain. You will find your dose has to creep up as you become tolerant, but at a certain point it should stabilise. Also, I'm currently cutting back on my doses a lot, after being on it for 15 years. I was on 140 mg and I'm now down to 50 mg, all since Christmas. I can go back up if I need to, but for now I'm managing.</p><p></p><p>Valium - useful, in small doses occasionally, for restless legs/crampy muscles. Don't overdo it, tolerance is an issue here too. And I find it does make me drowsy. I only ever take it at bedtime, and only then if my muscles are too twitchy to let me sleep.</p><p></p><p>Exercise - Janet is right, ease back, it could be causing the pain. Give yourself a couple of days off and observe your pain.</p><p></p><p>Another recommendation - keep a daily diary. Log your degree of disease on a scale of 1 to 10. I also log what I take and when. it comes in handy if a new symptom shows up that turns out to be medication-related. I only write a couple of lines per day (the list of medications can take up most of that). Any tests done also get logged. It means I can keep a record and not have to hold all that info in my head. Which doctor said what, when I had the relapse, what the symptoms were, how long it lasted. What I took, how I felt. All the info on paper, so I can let my brain get on with enjoying life.</p><p></p><p>And yes, you can enjoy life, even if you have a serious chronic illness. I saw my neurologist today and reminded him - I'm coming up for 27 years now. And I still don't have a satisfactory label for it. But in the early stages, things do look bleak. I remember saying that no way was I going to be able to live like this indefinitely, it was intolerable. Yet here I am, and I do get a lot out of life. I have carved out a niche for myself of sorts, and especially getting the pain under control is what brightened my outlook.</p><p></p><p>Hang in there, Jena. You adapt, you find ways to manage, and you learn. And over time, it does get easier to manage.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 433172, member: 1991"] Jena, get that pain under control. Major target. Next, see a pain clinic for management. Or some pain specialist somewhere. You need a regime that is safe as well as effective. All drugs have problems. Anything that is going to have a therapeutic benefit also has a good chance of side effects. It's just the way it is. You have to find something you can tolerate, that works. NSAIDS - if they work, that is great. Watch your blood clotting, though. They helped me a lot, then I developed sensitivity to them and can't take any of them now. Opiates - not necessarily the big ogre you might think, although if your dose has you "feeling loopy" you're taking too much for your level of pain. You will find your dose has to creep up as you become tolerant, but at a certain point it should stabilise. Also, I'm currently cutting back on my doses a lot, after being on it for 15 years. I was on 140 mg and I'm now down to 50 mg, all since Christmas. I can go back up if I need to, but for now I'm managing. Valium - useful, in small doses occasionally, for restless legs/crampy muscles. Don't overdo it, tolerance is an issue here too. And I find it does make me drowsy. I only ever take it at bedtime, and only then if my muscles are too twitchy to let me sleep. Exercise - Janet is right, ease back, it could be causing the pain. Give yourself a couple of days off and observe your pain. Another recommendation - keep a daily diary. Log your degree of disease on a scale of 1 to 10. I also log what I take and when. it comes in handy if a new symptom shows up that turns out to be medication-related. I only write a couple of lines per day (the list of medications can take up most of that). Any tests done also get logged. It means I can keep a record and not have to hold all that info in my head. Which doctor said what, when I had the relapse, what the symptoms were, how long it lasted. What I took, how I felt. All the info on paper, so I can let my brain get on with enjoying life. And yes, you can enjoy life, even if you have a serious chronic illness. I saw my neurologist today and reminded him - I'm coming up for 27 years now. And I still don't have a satisfactory label for it. But in the early stages, things do look bleak. I remember saying that no way was I going to be able to live like this indefinitely, it was intolerable. Yet here I am, and I do get a lot out of life. I have carved out a niche for myself of sorts, and especially getting the pain under control is what brightened my outlook. Hang in there, Jena. You adapt, you find ways to manage, and you learn. And over time, it does get easier to manage. Marg [/QUOTE]
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