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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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#21 | |||
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LOL - "iHugs"
![]() ![]() I pretty much agree with everything here - music, family, animals, tv, and lidoderm patches when I get really focused pain in a small area. I guess, as I think about it, I would summarize it as "love and beauty" things... Here's something that I don't think I saw yet - flowers. Since I moved from California to Arizona (a place I've always hated, unfortunately, but it couldn't be helped), I've discovered that I need flowers. They just comfort me with their beauty. Also, an ocean "sleep sound" is really helpful to me at night. And it can't be just ANY ocean sound - I looked and looked for the right one - it had to not have too much of a change in volume, or it would jerk me awake just when I was nodding off with a WHOOSH of the waves coming in. I like the "Naturespace" app, and the "Cumulous Aquae" ocean sound - ONLY that one. The other ocean sounds are just too disruptive. It gently rocks me to sleep, and when I can't sleep, it still soothes me and reminds me of the home I love. I miss my dog SO much ![]() Music is also very important to me. I play the harp, when I can. It's really a lovely instrument; I love how you embrace it and hold it next to your heart as you play and feel the music in your body. A good movie or tv show is a wonderful distraction, as are books late at night when I can't sleep. And family is such a blessing, although since we moved here, we're having so many family issues, sadly. The kids and I get along great, but we moved very close to a lot of my husband's family, and unfortunately ... well, it's usually not so good to move really close to either family, and it's really hurt our family ![]() Anyway, good thread! and interesting that we have similar things that help. |
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#22 | |||
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![]() Great idea on the Ocean sounds - I hadn't even thought of that! I will give it a try. Sorry about your dog, I can't imagine how painful that must have been but, I am so glad you were able to comfort him! The Harp.. wow we have a musical group here! I have always love the beauty of harpist it does look very calming and the sound.. just magical. Family.. we love how annoying they can be at times! I do hope those dynamics work themselves out. When you used your Lidoderm patches did you place them on the nerve root above the affected site? At least for me they worked much better when I found the nerve root or the location of the nerve path closest to the surface of the skin for better absorption (always higher up the nerve path so the meds flow down the nerve path). But, as with everything else it doesn't always work for everyone. I also use medicated compound cream in the 12 hours that the patches aren't on and I do think the combo makes them both more effective. I do hope the counseling is positive for both you and your daughter, let us know how it goes if you don't mind sharing. Have a terrific evening and thanks for joining in on the conversation ![]() |
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#23 | |||
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Nature
![]() This is me and my very sweet, sweet husband enjoying the Pacific Northwest and each other. ![]() |
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#24 | ||
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I use heat packs frequently. They do help with the pain a bit. My husband is terrific at spotting when I need one. He often gets one for me before I've even thought of it myself. Warm baths and light massage also help me.
I find it also helps me to focus on physiotherapy. It doesn't decrease the pain but I can see slow improvement in function and that keeps me feeling positive. It is still early days for me. Reading helps, of course, but I now find it difficult to manage the kindle on the bus and train; they are always crowded and I don't always get a seat. So, I like to listen to podcasts when commuting. I take the bus and train to/from work which, as I'm sure you all can imagine, is a bit challenging. All the movement is unpleasant and, since I am in London, I am constantly trying not to get bumped while I'm traveling. The podcasts really help to take my mind off the pain. My dog is a great comfort to me. She is so sweet and funny and beyond adorable. She loves to curl up next to me and take a nap. There is just no therapy like her furry, warm little body next to me, snoring softly. She is also really careful when I use my CRPSy hand to stroke her. That is favourite physiotherapy. ![]() |
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"Thanks for this!" says: | RSD ME (10-03-2013) |
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#25 | ||
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![]() ![]() Reading....yes, I have literally just started reading a series of books that always bring my pain down quite a lot when I read them. Two series of five books - ten in total, so I'll be zoning out for at least a couple of weeks!! They are the David Eddings books, first series 'The Belgariad' and second 'The Mallorean' - the first book is called 'Pawn of Phrophecy' and that's the one I've started. It's a fantasy series, but so well written and rich with fantastic characters, I can be lost in these books and love every minute. I also love Rosamunde Pilcher's novels, they are a little old-fashioned but like a cosy blanket, and just make me feel good. Literature and music - where would we be without the arts?! ![]() 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: | RSD ME (10-03-2013) |
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#26 | |||
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One time I was putting on my makeup at the bathroom sink and for some reason there was a penny on the counter, and it fell off onto my foot ... I collapsed on the floor in agony, curled up in the fetal position for a good 5 to 10 minutes. I know RSD - but mine never spread, and it went into spontaneous remission when I tore my shoulder ligaments and had shoulder surgery. The foot just went back to normal. I was going to get a spinal block for the RSD, but then the doctor retired, and before I found another, I tore my shoulder, and then the foot just snapped back to normal. However, I deal with the RSD monster with my daughter, who got a stress fracture in her foot, which started healing normally, and then one day ... ![]() I also deal with another monster with me - CFS (chronic fatigue syndrome) and Fibro. CFS is horrible, too, but the pain isn't anywhere close to RSD. But the fatigue is much, much worse, and like RSD, it's an invisible disease. And people may not understand RSD, but they LAUGH at CFS. "I'm tired after a long day, too!" they say, laughing. They don't understand - on the BEST days, I have trouble even walking around the block - it's like a Himalayan expedition. On the bad days, I stumble around and walk into walls; that is, when I can even make it out of bed. I've had this monster for 30 years now. And I used to be so strong and athletic ![]() And when you're with a group of new people and they want to walk somewhere - "I'm sorry, but I have a health problem and I can't walk far; you guys go ahead, and I'll just sit here and wait for you to come back." The stares, the looks over their shoulders as they walk away. Or the field trips - everywhere you go, you look desperately for the chairs, for the ledges to lean on. And then once we were in a room with nothing - NOTHING - and I finally had to just sit on the floor in the middle of a tour group with all the parents and the kids stealing glances at me, as I tried to smile and whisper to those around me "I'm sorry, but I have a health problem and it's either sit down or faint!" That, of course, on the few field trips that I was even able to go on; most of them I had to turn down right away because they were too long. I have a good deal of pain - I'm typically at a 4 or 5. It's nothing like RSD, though, and my heart goes out to you all. But I know RSD, and I deal with it with my daughter, and I just feel that this board is where I fit best, because I want to stay up with the trends and I have a lot in common with you all, and a lot of the same issues. So for me, as far as Lidoderm, I just put the Lidoderm patch on when I happen to have a very localized pain spot, which doesn't happen very often. But when it does, the patch is a godsend. |
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"Thanks for this!" says: | RSD ME (10-03-2013) |
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#27 | |||
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![]() I love how my harp just nestles on my shoulder ... I'll have to see if I can think of a good name. Quote:
![]() Anyone a Dr. Who fan? I'm looking forward to the new Doctor; I just didn't really click with Matt Smith (although how can anyone follow David Tennant?), although I like Clara. Wasn't wild about Amy. |
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