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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Old 07-11-2012, 11:30 PM #1
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Default those with rsd in their hands/arms, or both: how do you stop guarding?

I have had rsd for almost 2years, and have been guarding it even before I was diagnosed b/c of severe pain. Now, I need to drive, and I need to figure out a way to stop guarding my left hand and arm that has rsd with extreme pain. Movement hurts so much, and that's why it is hard for me to do it. And I have a claw hand; but I can move it, it just hurts more to. So any advice, experiences, stories?

Thank you.
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Old 07-12-2012, 03:18 AM #2
PhyllisJ PhyllisJ is offline
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Quote:
Originally Posted by lema56 View Post
I have had rsd for almost 2years, and have been guarding it even before I was diagnosed b/c of severe pain. Now, I need to drive, and I need to figure out a way to stop guarding my left hand and arm that has rsd with extreme pain. Movement hurts so much, and that's why it is hard for me to do it. And I have a claw hand; but I can move it, it just hurts more to. So any advice, experiences, stories?

Thank you.
I have had RSD in my left wrist/hand for over 5 1/2 years. Since the injury in my wrist, I have not been able to really use that hand, so I adapted to driving with just my right hand. I had to be very careful to not try to use my left because it doesn't have the strength needed and the pain is excruciating. Driving with one hand is most definitely possible as long as you're not driving a stick shift. I can no longer drive due to narcolepsy, but don't let RSD stop you from living...and driving. Believe me, you can adapt!
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Old 07-12-2012, 03:08 PM #3
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Default can't stop gaurding either

I've also got RSD in my left hand/arm up to my elbow. I still gaurd and often wonder if wearing a brace or wrapping it would help me when I'm out so people don't scare me so much (bumping me).
I still drive but with one hand. I use my right only (now that arm has tendonitis issues because I over compensate). I still have alot of function in my hand, not much stregnth but I can move everything although sometimes my hand will freeze or cramp up but it doesn't stay that way. I make sure to move and use it daily. I've done 2 long rounds of physical therapy so far and see my therapist in town often and am always reminded to move it, move it and move it.
S I guess to my point, I still gaurd and can't find a way not to. I'm just thinking of putting a brace on when out in crouds to keep people away??



Quote:
Originally Posted by lema56 View Post
I have had rsd for almost 2years, and have been guarding it even before I was diagnosed b/c of severe pain. Now, I need to drive, and I need to figure out a way to stop guarding my left hand and arm that has rsd with extreme pain. Movement hurts so much, and that's why it is hard for me to do it. And I have a claw hand; but I can move it, it just hurts more to. So any advice, experiences, stories?

Thank you.
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Old 07-12-2012, 03:53 PM #4
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Default Re: question about RSD

I have a question. I think I have RSD, rather than PN. What is guarding? Is it where you want to protect the area feeling pain? I have this in my left foot and ankle. don't want to wear shoes or socks, shave my leg or touch it. I have not had diagnosis. doc said I can't have surgery to correct my ankle because I have something going on in this area. surgery was discouraged. am I suppose to keep moving this foot, using it, shaving and all the rest even when it hurts? Sometimes I just want to sit still. Walking hurts. What will doc want to do for diagnosis? Also have ganglion cyst on ankle, Had two others removed that triggered all this. Structure of ankle is bad, torn tendons, achilles, colapsed ankle basically I cannot get repaired. I am miserable with this. ginnie
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Old 07-12-2012, 04:48 PM #5
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Wow, Ginnie - it seems like you have a complicated situation. I know nothing about your other issues and what I know about RSD/CRPS is limited to what I have learned in the past 8 months dealing with my daughter, so please just take this as one perspective.

The most common recommendation we have received for treating RSD/CRPS for my 13 y/o is to move her leg as much as possible and to work on desensitizing it. This has been done by both PT exercises and by maintaining as many activities of daily living as possible.

Since you are not sure what your diagnosis is and have other issues going on, I would certainly get clarification on the dx and also whether or not you need to take any of the other issues into account when deciding what activities you should do. Best wishes to you!

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Originally Posted by ginnie View Post
I have a question. I think I have RSD, rather than PN. What is guarding? Is it where you want to protect the area feeling pain? I have this in my left foot and ankle. don't want to wear shoes or socks, shave my leg or touch it. I have not had diagnosis. doc said I can't have surgery to correct my ankle because I have something going on in this area. surgery was discouraged. am I suppose to keep moving this foot, using it, shaving and all the rest even when it hurts? Sometimes I just want to sit still. Walking hurts. What will doc want to do for diagnosis? Also have ganglion cyst on ankle, Had two others removed that triggered all this. Structure of ankle is bad, torn tendons, achilles, colapsed ankle basically I cannot get repaired. I am miserable with this. ginnie
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Old 07-14-2012, 02:56 PM #6
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How did I stop guarding? I just set my mind to it and made it happen. It wasn't easy...but first you have to accept that RSD is a use it or lose it condition. Guarding and non-use will only make you worse long term...so why would I want to make myself worse by doing those things?

My advice it to start small. When my RSD spread to my arms and hands last year it was really rough. My physical therapist gave me a couple of small exercises to do with my hands and I did these several times a day (still do). She also saw that I had puzzles and saw some of my completed cross stitch projects on the walls of the house (done prior to the spread). She told me to do the puzzles and try to cross stitch again because those are good exercises for your hands. Don't get me wrong...it was VERY hard and VERY painful...but I was also VERY determined because I wanted my life back.

Any time I felt myself wanting to guard or not use my hands (or left ankle as that is where my RSD first started) I remind myself of how important it is USE them. There's so litle in our control with this monster but this is in my control. Some days the pain is worse than others so I may do less on those days or easier things but I definitely make myself do things. My hands will freeze up on me if I do not move them almost constantly so one of the things I still struggle with sometimes is reminding myself to move my hands/fingers when I am doing activities where I wouldn't normally...like if I am holding a fishing pole or a duster or whatever. Having my hand in that one position for too long causes the freezing and intense pain. I'm still constantly learning how to function with all the strangeness of this condition but for me at least what it has taken is my unfailing committment to get back as much of a "normal" life as I possibly can despite the pain (which I have all the time whether I move or not).
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Old 07-14-2012, 03:22 PM #7
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Default Re: thank you Lori and Catra

Thank you both for the information. I really appreciate at least knowing that others do this guarding. I did start the RSD in the left ankle. The condition of the ankle itself is not favorable to good mobility to start with. I go in on the 17th to try and get DX and more information from my doc. Thank you again. ginnie
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Old 07-14-2012, 09:45 PM #8
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I learned to do everything one handed. Of course I use the affected hand as much as I can tolerate and sometimes more but I can't stop guarding it.
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Old 07-14-2012, 10:43 PM #9
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I know I still guard mine in certain situations because there's more than just the RSD causing massive pain. But I have spent a lot of time when sitting or waiting or whatever...it's become a habit...using my other hand to gently rub and flex my fingers. It hurts, but I just try to at least pay attention to my pain levels. It's taken a long time for me to a place where I'm not quite as protective of it, but I still have to be at some points. If you can hold your hand/arm against your stomach while watching TV or talking to people, and just start by getting used to having your opposite hand on the RSD area. Start slow cuz it's not gonna happen over night. I still work with mine and it's been over 5 1/2 years. As you get used to touching it yourself, you will eventually be able to relax a little. Just know it takes time.
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Old 07-16-2012, 11:38 AM #10
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Default Hi Phyllis and friends

[I know it is hard to guard a foot or an ankle, unless I plan on not walking. I go tomorrow to see what can be done about this. My prayers is that it doesn't spread for any of us. take care, ginnie
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