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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)

CRPS Specialist

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Old 04-16-2019, 06:05 PM   #11
CRPSinSC
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Highlander, my CRPS was not work related, but over the course of 7 years it has spread, gotten so much worse and dibilitated me to the point that I am now in a hoveround. What I am saying is you need a VERY GOOD attorney who can do the research and defend your case WELLLLLLL!!! This isn't going away and if you are getting denied and shuffled around and bullied or mistreated in any way, you won't get the care you need.
Also, the earlier it's caught, the better the chance some of what happened to me might not happen to you....so denials and lack of care can drastically be detrimental for this condition.
Get the best lawyer you possibly can and be sure they are going to do a top notch representation for you.
Im sorry I don't have more advise, but this is my immediate thoughts after reading your post.
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Old 04-23-2019, 04:26 PM   #12
BioBased
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Please engage an attorney. You have a chronic progressive condition, pray that it goes into remission, but plan for the long haul that it might not. I held out believing I did not need one & hired one only when I was fairly sure CRPS had spread. Waiting was a huge mistake. Lawyers keep us from being used & abused by Worker’s Comp.

I was cut off from aqua PT as soon as I was improving. I believe I could have gone into remission at this point. I was misinformed by the PT therapist that she would appeal. She didn’t, so I ended up on my own trying to do my own land & water PT. It was not successful. Had I had an attorney I might have avoided this mistake.

Get copies of all doctor’s notes. Review them. Correct errors in them immediately.

Take photos of your limb in the doctor’s office at every visit. Bring a witness. Have the witness take notes. Bring a laser thermometer to every appointment to take temps of limbs, ask that it be noted. lack of symmetry between opposite limbs is a hallmark of CRPS. You want this documented.

Keep a dairy. Record everything. Your sleep, your pain, your eating habits.

Take daily photos of your limb (s) normal, in a flare, etc. set up an album on your device. Pictures over time are very revealing. In my case, despite lots of exercise, the pictures I have show deteriorating muscles.

Keep a running list of your doctors with dates.

Keep a list of everything you buy with receipts, like a shower chair, compression stockings.

Get a filing system set up now. A file for every doctor. A file for everything above.

Get a copy of your accident statement, if you have one. Make a folder for that.

My files are a mess, because I did not think it mattered, plus I was in too much pain to think clearly. Now I am afflicted in 4 limbs, my stomach & my eyes, everything is beyond the beyond hard for me to do. If I had known how difficult things would be I could have asked someone to set the system up for me.

I will try to think of more, but I am too tired to finish.
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Old 05-01-2019, 04:39 AM   #13
Irishgirl
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Quote:
Originally Posted by highlanderatheart View Post
I have been recently (two months ago) diagnosed with CRPS, following three surgeries in my R UE, followed by a car accident 6 months later resulting in more UE injuries and whiplash. My initial injuries requiring surgery are work related. I am in the workers comp downward spiral of specialists and denials, etc. Anyone else trying to negotiate through workers comp with a diagnosis of CRPS? Any advice would be greatly appreciated!
I am brand new to site so I hope I am posting inn the right place. My crps was work related too. It is a battle. And now you have a car accident in the mid. That is wicked. I totally agree with everything biobased said. It is a lot of work but necessary. I kept a sort of short diary. Listing dates I spoke to anyone and Dr appt. What I was told. I always took a second person to every doctor appt.
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Old 05-01-2019, 10:54 PM   #14
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Highlanderatheart. I had a RUQ injury at work in 2012 that resulted in surgery and then CRPS. I agree that the most important thing to do is to get a lawyer that specializes in WC. Interview a few different lawyers and make sure your lawyer has handled CRPS cases before.

WC complicates everything. I have nothing good to say about the process, but I am happy to answer questions/provide guidance. Each state has their own WC laws which makes things even more difficult.




Quote:
Originally Posted by highlanderatheart View Post
I have been recently (two months ago) diagnosed with CRPS, following three surgeries in my R UE, followed by a car accident 6 months later resulting in more UE injuries and whiplash. My initial injuries requiring surgery are work related. I am in the workers comp downward spiral of specialists and denials, etc. Anyone else trying to negotiate through workers comp with a diagnosis of CRPS? Any advice would be greatly appreciated!
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Old 05-01-2019, 11:03 PM   #15
gigicnm
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Mlb3815,

I see you're from Boston. Have you seen Dr. Roberto Feliz in Hyde Park? He's an anesthesiologist/pain management doctor. He lectures all over about CRPS and treatments. A significant portion of his patients have CRPS, and he is passionate about treating CRPS. I have never had another doctor know so much about CRPS and be constantly on top of new literature. I would highly recommend seeing him for a consult even if you do not wish to change doctors. He may able to offer you some treatment options that you haven't tried yet.

Good luck,
Gigi

Quote:
Originally Posted by Mlb3815@gmail.com View Post
I currently see my surgeon and a pain management specialist. Should I be seeing any other specialists? I feel like hardly anyone knows about CRPS. My pain management specialist has told me my memory and cognitive issues has nothing to do with CRPS but these issues did not develop until after my post surgery CRPS. I feel like I’m always in a fog. He also said my blurry vision is unrelated. I got a new prescription and everything is still blurry. Please help.
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