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 05-30-2017, 07:35 AM #1
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Default Hope everyone had a great weekend!

Hi everyone.

Just wanted to check in and say that I hope everyone had a nice weekend. I usually dread holidays because as much as I love to see family and friends (and I never regret it)...I usually end up with elevated pain levels and exhausted. This weekend was no different...but at least we had some nice weather and I got to spend a little time outside too which was nice.

The flare up in my hands and the inflammation have FINALLY started to subside. Took 2 dospaks of steroids but the second one seemed to do it. This flare up lasted about 3.5 weeks...one of my longer ones lately as most seems to last a few days to a week. But then again...that functional capacity exam was pretty brutal and even after the pain started I kept going when in normal situations I would have just stopped and rested before it got to that level.

The report came back confirming that I am unable to even do sedentary work on a part time basis...so fingers crossed that I will be able to win my long term disability appeal and that the report will also help my work comp case as well. But it was terribly depressing to read in black and white, in very clinical terms, just how bad of shape I am in and that I am not going to get better. I still have hope that with the DRG...that will change...but it appears it will be quite a fight to get one so we shall see. So...both good and bad news on that front I guess.

Hope everyone is doing well and that you were able to enjoy your weekends.
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Old 05-30-2017, 10:28 AM #2
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Hi Catra. I hope and pray that your pain subsides and that everything works out okay for you. Sending virtual hugs your way.
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Old 06-04-2017, 08:03 AM #3
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That was of course past weekend. Hope you have a good one now as well. In my country it is a longer weekend now (Pinksteren aka Pentecost or Whit Sunday), it is an official Holiday where I live (Catholic country). So yeah...
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 06-12-2017, 05:04 AM #4
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How are you doing right now, catra121?
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 06-12-2017, 11:07 PM #5
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Quote:
Originally Posted by CRPSbe View Post
How are you doing right now, catra121?
Today has been a rough day...but I am over the flare up from the FCE. Emotionally...I'm still in a bit of a limbo to be honest. It's a tough thing to have to come to terms with the fact that for the foreseeable future...this is as good as it will get for me...but on the other hand I'm hoping that the long term disability appeal will be successful and at least relieve one large weight of stress off my shoulders. I see my dr on June 29th and am making a list of things to talk to him about...like possibly a motorized scooter or wheelchair to at least improve my mobility when I DO get out of the house or...I don't know...other stuff that might improve the quality of my life based on where I am at this point in time. Sounds like work comp is going to be a years long battle (met with my lawyer last Thursday)...so any hope of treatment in the near future on that front is pretty much non existent...but at least it's good to know so I can have a clear picture of reality instead of getting my hopes up. So yeah...I'm kind of down but with a better idea of where I stand with everything I can start making decisions and moving forward instead of this constant waiting to find out where we go next.
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Old 06-15-2017, 05:56 AM #6
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Quote:
Originally Posted by catra121 View Post
I see my dr on June 29th and am making a list of things to talk to him about...like possibly a motorized scooter or wheelchair to at least improve my mobility when I DO get out of the house or...I don't know...other stuff that might improve the quality of my life based on where I am at this point in time. Sounds like work comp is going to be a years long battle (met with my lawyer last Thursday)...so any hope of treatment in the near future on that front is pretty much non existent...but at least it's good to know so I can have a clear picture of reality instead of getting my hopes up. So yeah...I'm kind of down but with a better idea of where I stand with everything I can start making decisions and moving forward instead of this constant waiting to find out where we go next.
A scooter is going to be heaven. Might be a "wrong" thing to say, but it's a lot of freedom regained. Trust me on that. Especially if you have stores or your bank nearby - it's a Godsend to have that.

I've been through year long battles, trust me hang in there. Remember I have CRPS come September 22 years now, so I've been where you are (with the rules and regulations of my particular country, of course).

Have a good day!
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All the best, Marleen
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 06-15-2017, 09:37 PM #7
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Quote:
Originally Posted by CRPSbe View Post
A scooter is going to be heaven. Might be a "wrong" thing to say, but it's a lot of freedom regained. Trust me on that. Especially if you have stores or your bank nearby - it's a Godsend to have that.

I've been through year long battles, trust me hang in there. Remember I have CRPS come September 22 years now, so I've been where you are (with the rules and regulations of my particular country, of course).

Have a good day!
Thanks. I've never been opposed to using tools and devices if they make my quality of life better and right now that needs to be my goal. We'll see what the dr has to say about it in two weeks.
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