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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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#51 | ||
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Ouch vivid, not surprised you are struggling at the moment. That leg looks very painful
![]() It can stop spreading, yes. You can find what's known as remission, where symptoms ease off for a period of time, from months to years. I hope you can get there. I'm sorry the pain is so awful and relentless, it truly is the worst part of this disease and affects every single thing you do or think. Gets even the most positive of us down massively. I'm going to suggest a couple of things, not as any kind of answer to the pain, or instead of the meds (sadly), but just to try on top of what you're doing, to help you cope with the things CRPS is throwing at you. One thing that's helped my pain levels and overall sanity is doing meditation and deep breathing exercises. I know it sounds a bit pointless when you're in so much pain, but they have helped me and I think are part of the reason I am out of my wheelchair and off crutches, at least for now. I use the Mindfulness ones, especially the Body Scan - you can find them on YouTube. If it's any help, I was a HUGE skeptic about this kind of thing! In fact I sat at the back of the pain management class initially and thought it was a ridiculous idea... Stick with it, as it really does help. When you are in pain, your body as a whole is under stress. When that pain is round the clock, you are in stress mode all the time. It's really bad for us in lots of ways, and affects many body systems. The first time I tried meditation, I was astonished at just how tense I was, how much I was holding everything tightly strung against the pain. Relaxing out some of the tightness each day has made me feel more in control and helps me cope with the pain better. I can't take much in the way of painkillers due to stomach issues and because I have to concentrate so much for my job, but I still feel more positive now than I did when I was on higher doses of meds. If you struggle to find the time for a meditation session, then do deep breathing exercises. A long, slow breath in through your nose, deep into your lungs (imagine trying to draw the air into your feet), hold for a couple of seconds, and then a slow exhalation through your mouth, silently counting to five. Repeat a few times. These exercises have saved me from some of the panic moments when you think you might just go mad from it all, and also some of the frustrations when things go wrong or you just can't do what you want to. As far as the painkillers and digestive stuff goes, I hear you loud and clear. It's horrible that something you are taking to ease one horrible symptom just goes and gives you other stuff to deal with as well...so unfair. When I was on them, I drank prune juice 3 times a day (a small glass), and that really helped with some of the more unpleasant digestive problems. I tried OTC ones but didn't get on with them at all. Prune juice is all natural, and good for you too. Health food shops will have it. I hope it's a little help. If nothing else, just know that you're not alone and that we do understand those feelings. I hope you have a better day today and that your leg is a bit easier. Hang in there. Bram ![]()
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CRPS started in left knee after op in Aug. 2011 Spread to entire left leg and foot, left arm, right foot. Coeliac since 2007. Patella femoral arthritis both knees. Keep smiling! . |
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"Thanks for this!" says: | vividDC (01-06-2014) |
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