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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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In another year that 4's a 1 ![]() |
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"Thanks for this!" says: | bfff2020 (03-25-2014) |
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#22 | |||
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I am so very happy to hear that you are still doing well.
I agree that the best thing (for me anyway) is learning what your limits are and living within those limits. I still push myself to always surpass those limits and gradually I see improvement over time...but being realistic and honest with myself about what I can and cannot do has greatly improved my ability to function throughout the day at a "normal" level. I also think that over time...we adjust how we perceive the pain. For me...what I would classify a pain level of 6 at today probably would have been a 12 before I had RSD. As you go through this nasty disorder I think you really alter your idea of what real pain is because (at least for me) I could not even imagine what this sort of pain would feel like prior to experiencing it. As time went on...I learned new meanings for a 10 on the pain scale and then what I USED to think was a 10 wasn't nearly so bad. I've definitely learned to cope with pain over these past 5 years (feels like it's been forever). It's really the combination of those two things (plus a great support system at home and a lot of things in my life that are really wonderful) that make living a more "normal" life possible in spite of the RSD. Don't get me wrong...this is not the life I would ever have pictured for myself and the pain flat out sucks...but there's a lot that I am grateful for. I'm so glad you continue to get better and I hope you reach your goal of returning to work full time. ![]() |
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"Thanks for this!" says: |
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#23 | ||
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Well said catra
![]() 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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#24 | ||
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Junior Member
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If I push past the pain to even do something as mundane as finish grocery shopping it leaves me in that level of pain for three to four days , I have actually collapsed because of this before. It is horrid and so so painful, it doesn't help movement at all but maybe that's because its nearly my entire leg? weight baring and all that? Maybe the benefits of extreme use is individual as we are?
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#25 | |||
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Senior Member
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But even with that said...we are ALL different. The key is learning our own limits and pushing just enough to continue improving but not so much to set us back. I've had many setbacks and bad flare ups over the past few years since it spread from just my left ankle to my left knee and entire upper body from waist to neck including both arms and hands. No matter how you slice it...there just isn't a quick easy one size fits all approach to treatment of RSD/CRPS. |
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#26 | ||
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Junior Member
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Wow your endurance is extraordinary! I would never attempt a standing job again (I did once made it an hour behind a register, the sweating made it look like I had pee-ied myself.) With the cane I can walk about 30 minutes before the trembling and pain spike get to be too much. Just standing with small shifting movements to work , I can endure only about an hours worth.
Yes being young ( I am 27yr old) and using items like the cane ( me), walker, and electric cart feel odd and worse are the looks you get in public. Like how dare I laugh and smile because that means I am not really disabled? come on people! I have developed a pain poker face that I use almost everyday unless I am at the highest end of my pain spectrum. Because it distresses people when I show on my face that I am in agony. The only person who can tell its a mask is my Boyfriend/fiancee Dave. He knows the blank face is the pain face and to read my eyes instead. |
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#27 | |||
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Senior Member
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That's how my boyfriend is...he can definitely see it in my eyes when the pain flares up.
I actually find that the walker is pretty well received by strangers. I guess because they think why would I use it if I didn't need it? What I also like about it is that it's a seat (it's the kind with 4 wheels and seat) and it has a basket to carry things too. I find it takes a lot more weight off my bad leg than the cane does. I like always having a seat with me so that no matter where I am or what I am doing, I can sit if I have to. I've also been know to sort of kneel my bad leg onto the walker if I am standing still so there's no weight on it at all...all is on my good leg...but it's comfortable because I have something to "set" the bad leg on so it's not just hanging there. I also use the walker for balance...mine is terrible. I just fall...completely out of no where I just fall to one side and end up on the ground. That's scary...but the walker has been great and I haven't taken a tumble while using it. If I feel like I'm starting to tip I hit the breaks and either wait until I am steady or sit down on the seat. That walker is really the best thing I have gotten since this darn thing decided to spread to most of my body. I literally could not function "normally" without it. |
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#28 | ||
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Junior Member
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I can see the walker being received better because lets face it canes were once a fashion item , walkers never have been and for a young lady to use it she must need it. |
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#29 | ||
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Senior Member
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Ditto on the balance Catra and Lynn. Reminds me of the odd day in my youth when I really did have a skinful and could barely stand. When you go, you just go. It's really weird and unsettling.
I've been fairly lucky in that our house is quite small, and there's usually a wall or a bit of furniture to clutch when it happens. If I do go out, I usually have someone with me now, and if I lurch they can catch my arm. I often wonder what people think! Catra, the walker sounds like a great plan, and if I'm honest it would solve a lot of going out issues for me. But just yet I can't bring myself to do it. Ours is a small town and everyone talks and comments, particularly the older folk, who can be very judgemental and cruel. I know it's daft, I mean I used a wheelchair for over a year. I suppose I've associated a walker with old people, and I know that's unfair and stupid of me. I know better about these things now... ![]() Maybe it's time. It would give me more freedom, and that's what it's all about. Thanks for the discussion. As always, I learn such a lot from everyone here. Bram.
__________________
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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#30 | ||
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Junior Member
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![]() http://www.medline.com/product/Gener...6#.UzvRDVdGmpo Last edited by Llynnyia; 04-02-2014 at 04:00 AM. Reason: more info.. |
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