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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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02-22-2009, 02:04 PM | #11 | |||
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Well im a member of the cant handle any vibrations at all club LOL.
I also cant use the car stereo on loud anymore, and MRI's are absolutely torturing devices Long trips in the car are extremely painful, especially if im not in my van. When I went out shopping for a car I would sit in the back seat, everyone thought I was nuts. But if the back seat wasnt comfortable, then the whole car was worthless to me cause I ride in the back a lot lol. I finally found a Toyota Sienna XLE, and love the ride! It is sound proof so no loud road noises, and it rides like a cloud. The back seats are the same as the front, and soooo comfortable. This last summer I took a trip on the train and worried about the vibrations. Well it wasnt bad at all, and I highly recommed that type of travel for those that are thinking of traveling this summer. You can even take your powerchair, it is really a nice way to go. You know what gets me more than vibrations is loud noises, especially loud whining children.....man that one just brings on the pain! So at family gatherings you will either find me right next to the BBQ grill, or locked away in my room, but hardly ever mixing with all the people. Went from the life of the party to the invisible man LOL!
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. Gone Squatchin |
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02-22-2009, 02:32 PM | #12 | |||
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Magnate
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That train ideal might be a good thing. I never thought of it to go back home.
I went to Ky. for 2 weeks this summer and flew down. Oh My GOD. I said I didn't want to ever fly again. The plane was so bumpy, I thought we were going down some of the Colorado roads, hitting all of the bumps. There was an army guy sitting next to me and we talked a lot or I most likely would have looked for a parachute. When we landed, it didn't seem like he slowed down to land. I thought he was trying to stop on a dime. I had a great time though back home. I actually got to go to my grade school reunion. There were people there up to 94 years old that had went to our little two room school house. The weather was perfect the whole time. BUT, I got a virus the 2nd week and started having breathing problems. Different weather I guess. I am planning on going back this year for my High School Reunion, the 40th. I will either ride a train or drive. Kids noises make me crazy too. I no longer let any other kids spend the night with the boys when they are here due to their hormones raging as teenagers. Ada |
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02-22-2009, 03:05 PM | #13 | ||
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Senior Member
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Hi,
Loud obnoxious voices and wailing children are awful for me. There is a therapist at my PT office that I want to clobber, he is always insanely loud and reminds of the prepubescent (sp?) boys in jr. high and high school that were always yelling back and forth to each other in the hallways to get everyone's attention. But the absolute worst are cars in the city honking their horns when they are right next to you as you are walking down the street! Talk about head spasms! This year for the first time I also discovered that I had trouble with refs' whistles during football and basketball games when they were on TV in our house (all too often!!!!). The sound goes right through my brain and really kills my head. I learned to just retreat to my room with a good book or my laptop because all I did was nag everyone else to turn the TV down and it wasn't fair. For some reason I still enjoy listening to my Ipod at work when it gets a little noisy in there and I need to concentrate. I don't blast it as high as I used to, though. I drive a Honda Civic and it's smooth enough for me, I am always comfortable. I'm only 5'3". My husband's SUV is OK if I'm driving, but not good if he drives - just too bumpy and swervy. Plus I have to put the seatbelt under my arm since it hurts too much to wear it over my shoulder. It's interesting to talk about all this stuff with you guys, I love discovering how much we all have in common. I may be one of the only RSDer's in RI, but at least when I come here I am no longer alone... Happy Sunday, Sandy |
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02-22-2009, 09:04 PM | #14 | |||
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Member
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the other thing i wanted to ask about is
when something is cold ie ice cold can of soda or anything else can you feel the coldness coming off the can or ice. it feels like to me that it radiated across the counter any one else have this ... i didnt explaine very well lol |
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02-23-2009, 09:37 PM | #15 | ||
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Member
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Hi Guys
I have the same problem with vibrations. The type of 4wd we bought depended on how bumpy the ride was. Our 4wd is pretty good, better than our last one, but still hell on earth for me. I have to hold my foot off the floor of the car, hovering in the air, it's that bad. But of course that's hard to do when you have an RSD affected hand and arm too. So what I do now (if I'm not driving, that is) is take a lounge cushion (so a small 35cmx35cm size) and fold it in half, then put that under my thigh. It limits the vibrations I get through the seat into the top of my leg, and stops my foot from touching the car floor. It feels well supported and just makes things easier. Or if we're going on a long drive, I sit in the middle seat of the back and put my leg straight through to the front seat, on a cushion on top of the drink holder thingy in the middle. (I hope you can understand what I mean!) But I've actually just bought an inflatable foot rest. The bottom is flat but the top is high at the front and back but dips in at the middle, like a V shape. You put your heel in the V shape and it helps support your foot while you're in the car. It reckons because it's full of air (you can choose how firm/soft) it helps limit the vibrations as well. It was AU$30 down to $5 so worth a try, anyway! My arm and hand is also the same, so if I'm a passenger I actually put my arm in a sling. That way it's well supported but not touching any part of the car. As for airplanes, it's a nightmare. I last flew last September, from Sydney to the Gold Coast (1hr flying each way). I cried. In front of my four sisters in law, I cried. The pain was beyond anything I've ever felt. I tried lifting my leg up and supporting under my thigh, but it just didn't work as well. Even without my foot on the floor, the vibrations through the seat were insane. It took me two days of being dosed up and staying in bed for the pain to settle down, which was just horrible when it was a girls trip away. For the return flight I took 20mg endone (normally I'd only take 5-10mg at any time, I've only had 20mg doses after operations) but it still wasn't enough. I've had to resign to the fact that unless it's a huge emergency I'm not going to be able to fly anywhere for a very long time. We recently went down to Melbourne for a holiday (to see family for Christmas- it's a 1500km trip) and because of how I am in planes, we knew we couldn't fly, but I can't be in the car for long either. So we ended up taking 4 days to drive down there and 4 days to drive back (normally you can do it in 12 hours), with stops every 2 hours, stopping anywhere from 2-10 hours each time. The whole trip was rearranged and organised around my reaction to vibrations! Oh, and I get the kids thing too with the loud noise flaring me up- and I have four kids! Our house can be crazily noisy sometimes- the tv on loud, kids on the Wii in the other lounge with it up full volume and laughing and yelling etc, Hannah screaming around the house on her trike, computer games on, arguments about who's turn it is.... is it flaring you up just reading this?! I often have to retreat to my room to get away from it all, the only trouble is the kids follow me in to give me cuddles and make me feel better! But that usually ends up with them arguing about who gets to cuddle me first! And I'm the biggest party pooper when Matt is play wrestling and tickling the kids. They scream the high pitched screams and I can't handle it! It's horrible! I know they're having fun but I can't be anywhere near them when they do that. I also can't handle the vibrations from a loud tv or at the movies, no difference there either. People can't understand how the vibrations affect us, though. My SIL asked us to visit last week but that's a 1 hour drive on country roads and I said I just couldn't. We've gone up there a fair bit lately and each time I've been in tears on the way and way back and I've gotta start being more assertive. She just couldn't understand why it was so bad for me and hasn't talked to me since. Ah well, you can only do what you can do, right? Anyway, I'll be giving this new footrest thing a try so I'll let you guys know if it helps. Daylilyfan- Thanks also for the tip about the vibration gloves- I'm going to see if I can get them over here, they sound great. x Kate
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RSD in right arm for 13 years, right leg for 8 years, left arm since May 2013, with full body symptoms and CNS. |
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02-24-2009, 09:07 AM | #16 | ||
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About the vibration gloves -- they are made for people who work with machinery such as weedeaters, mowers, chain saws etc. I am sure there are many brands made. I found out about mine from my neighbor who is a landscaper.
They are made by Valeo, but Valeo does not sell directly to the public. You can go to their website, though, and they can direct you to someone who sells near you. www.valeoinc.com the cool thing about them is that they come in so many styles - with fingers, without fingers etc. My hand swells, so I got a model "GAFS" which has a cuff instead of elastic at the wrist. It has some velcro if you really wanted to tighten it, but I never have. They are leather, take a bit to break in, but after that are soft. There is a gel like substance in between the layers on the thumb, fingers and palm. They don't take away **ALL** the vibration, but I notice a difference when I have to drive more than, say, 10 miles, or when it's rough, gravel, or other times when there's a lot of vibration on the steering wheel. |
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02-24-2009, 10:14 AM | #17 | ||
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Same here, I can not ride on bumpy roads (which is a lot of the roads around here).
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02-25-2009, 12:06 AM | #18 | |||
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Member
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like you cake i dont fly anymore
i used to have to because my doc was in another state 1hr flight there an from i would have to be drugged to fly back but planes are the worst for me . the car i cant put feet on the floor either . hope this finds all with lowered pain tonight |
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