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 05-26-2010, 01:27 PM #1
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Maybe the dr wants it for his own records, it sounds like her pain has not been gotten under control , maybe this has to do with that in some way..

I recall seeing posts about her pain control problems, but can't recall the details...
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Old 05-26-2010, 02:11 PM #2
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Originally Posted by Jo*mar View Post
Maybe the dr wants it for his own records, it sounds like her pain has not been gotten under control , maybe this has to do with that in some way..

I recall seeing posts about her pain control problems, but can't recall the details...
You are correct. I do like this doctor but lately she's had Suzy fill out forms indicating whether she feels better at all and or has "my services as a doctor helped you in anyway". I do feel this doctor is giving up on her. I've told the doc that Suzy's done the best under you, believe it or not, and told her what the positives were and that their is no cure especially a cure for one who received little to no treatment her first 4 years of the disease. In those days she may have slept 2 hours a night for years making her thinking disoriented. Now she does get sleep but her RSD has spread these past 3 years. She is better but her manner with doctors is not the best and never was even when she was a small girl. And she's very shy on top of it all. My wife feels strongly, with everything she's read, that the best thing for her is no evasive proceedures at all and try to rid stress and maximize movement without causing a flare. She wants nothing to do with stimulators, any cutting of bone, skin, nerves etc. She wants nothing to do with physical therepist who do not have a clue. And she's correct, somewhat. She has had ketamine and lidocaine infusions and several of them with no luck. People are different, some will try anything and everything, some just want to be left alone. Suzy just wants to deal with her condition her way and is steadfast about it and it rubs docs the wrong way.
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Old 05-30-2010, 10:15 AM #3
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I went thru an FCE. After my FCE it was determined that I cannot lift push pull or carry anything more than 10 lbs. It is not a hard test and they said that now with it all hooked up to the computer it is easier to determine if a person is faking everything or not. The test took me about 1 1/2 hrs I think. Don't really remember it was a yr ago almost.
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Old 05-30-2010, 10:51 AM #4
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I imagine I will have to go through one of these.

What worries me, is that I can lift up my service dog, who is 42 lbs - but it feels like my muscles are being ripped out. It is not something I do often, but I do put her up on a table to trim her toenails. I help her up - I don't just lift her from the floor. I could probably lift her all the way up if her life depended on it, I could do it once, but I don't think I could do it a second time unless I rested several hours in between.

I carry 12 packs of pop from my car to the house, but have to hold them up close to my body, and I do one, then a couple hours later, I do the second one.

My problem is the PAIN keeps me from doing things. I don't have enough atrophy that I absolutely cannot lift anything - it just hurts so bad, I don't other than in my home PT exercises... then I limit myself to a bag of sugar lifted a few times.

So - my worry is that I have worked hard to keep some strength - but even a gallon of milk causes me a LOT of pain... I could only lift one of those for one or two times, then I usually lay down. In fact, I usually buy milk in half gallons so I don't have to lift a gallon. Laying down does not help the pain - but it keeps my arm from swelling, and any exertion causes me to be very tired.

I am very worried that a test like this will show me to be able to work, when I am not. I have a terrible time doing a few dishes, or doing a couple errands etc.
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Old 05-30-2010, 06:42 PM #5
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Quote:
Originally Posted by daylilyfan View Post
I imagine I will have to go through one of these.

What worries me, is that I can lift up my service dog, who is 42 lbs - but it feels like my muscles are being ripped out. It is not something I do often, but I do put her up on a table to trim her toenails. I help her up - I don't just lift her from the floor. I could probably lift her all the way up if her life depended on it, I could do it once, but I don't think I could do it a second time unless I rested several hours in between.

I carry 12 packs of pop from my car to the house, but have to hold them up close to my body, and I do one, then a couple hours later, I do the second one.

My problem is the PAIN keeps me from doing things. I don't have enough atrophy that I absolutely cannot lift anything - it just hurts so bad, I don't other than in my home PT exercises... then I limit myself to a bag of sugar lifted a few times.

So - my worry is that I have worked hard to keep some strength - but even a gallon of milk causes me a LOT of pain... I could only lift one of those for one or two times, then I usually lay down. In fact, I usually buy milk in half gallons so I don't have to lift a gallon. Laying down does not help the pain - but it keeps my arm from swelling, and any exertion causes me to be very tired.

I am very worried that a test like this will show me to be able to work, when I am not. I have a terrible time doing a few dishes, or doing a couple errands etc.
You hit the nail on the head. My wife's right arm is crippled from RSD. She is right handed. The RSD has spread to her legs and other areas. She knows that if she does not move about her condition will worsen so she does and pays a price. For example, she loves her gardens and was planting today in the heat in which she is not fond of. She rigged a small towl with a small icepack to wrap around her neck to keep the heat down. This pack was very small and not cold but slightly cool. She is now suffering because of this. Not only are her musles and joints sore from simple crouches and bending over but her neck is sore from a towl with 4 icecubes in it. It's not that you can't put one foot infront of another it's the repercussions that come along later that a test like this will never pick up on, jot down and report to one sort of insurance company or another. This test may work for some but to be used in a SSDI hearing, the chance that a gizmo hooked to your appendages spewing data to some knucklehead who then submits to a judge who then dismisses a firm diagnoses and 8 years of recorded suffering for some machine is absolutely too risky to take. Also, this test would be given by someone who has never ever met my wife, knows her condition etc. This test does not see my wife suffer every single day from the least amount of effort like taking a shower.

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Old 05-30-2010, 07:16 PM #6
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From seeing the electrician doing his FCE I was noticing that while I would be able to do most of those tasks -except the overhead screwdriver work- I'd have eto keep dropping my arms down to get blood flowing in them again LOL.
Then I would have the delayed pain later or possibly even spasms.

So I wonder how that would show up on the testing?? If at all?
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Old 07-08-2010, 07:54 AM #7
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Quote:
Originally Posted by Jo*mar View Post
From seeing the electrician doing his FCE I was noticing that while I would be able to do most of those tasks -except the overhead screwdriver work- I'd have eto keep dropping my arms down to get blood flowing in them again LOL.
Then I would have the delayed pain later or possibly even spasms.

So I wonder how that would show up on the testing?? If at all?
I have no clue how this would be detected. One thing I've noticed is many pain treatment facilities do not do the test anymore because insurance in many cases do not pay for it. I've found 2 places that will do it for cash or charge, close to $1000. Every place I called the first thing they asked "is it a WC case" in which I responded "no, an SSDI case" and then seemed surprised and asked why would you even want this test done? My wife is going to do the test but it just seems another chunk of money down the drain. And more importantly if this test fails to help my wife at all, the feeling that we paid good money so she could go through much pain performing a test that can't gauge much as far as RSD is concerned.
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Old 07-08-2010, 09:53 AM #8
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I have to do the FCE test next week...order by SS...they told if I don't go my SSDI case will be closed and not go any further. I took these tests when I was a child because I also have Cerebral Palsy...I did horrible...we'll see what happens....
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