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 09-08-2013, 11:52 PM #11
PebblesCanDo PebblesCanDo is offline
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Originally Posted by Sylmeister View Post
Hi Pebbles, I went through my social security court hearing in Tucson. Word of advice for dealing with Soc Sec, Im guessing that the Tucson Office on Campbell is where you are going... Document everything. I know the thought of that alone must bring chills to you, but every time you talk to someone on the phone, write down their name and the date and time and what the discussion was about and as close as you can to exactly what they said. ABsolute MORONS!. Make an appointment, don't just show up. I would mail them things from across town and they'd say they didn't get them, then I show up to bring them in and they say, oh here it is, we have it right here in your file. You hear stuff all the time about gov't employees, but I never fully grasped how few people cared about doing the right thing or their job properly until I dealt with these people. "You can't expect us to get anything you put in the mail." Why not, you expect that I am supposed to get everything you mail to me. I can not tell you how many hours I sat there in that miserable uncomfortable office, waiting.

I was denied, appealed, was denied again and then had to file for a judicial hearing. At that point it was easy... Once I got the hearing and appeared before the judge. Be totally honest and tell them every F'ing detail. Even the things that are humiliating and depressing and make you feel bad about yourself. This is where you need to suck it up and be honest in massive detail and to a fault. I had to keep track of things by hand back then, I couldn't sit at a desk top PC. There is a app now that I've just started using called My Pain Diary. A guy in Australia who has RSD built it and he thought of a lot of detail. You can even add photos to daily documentation. It's really easy to use and you can print and email reports to doctors and print out stuff yourself. It's about $5 but for me, even though I do not have any litigation or legal stuff going on right now, find it very useful. The best part is that it's massively easy to use. Have that sweet husband of your take photos of your hand, arm and you in general, when ever you have swelling, discoloration, etc. document that as much as possible. It will prove invaluable if you have to go all the way through Soc Sec to a judicial hearing or have any other litigation you need to be prepared for.
best of luck, I know it is not fun. Sylvia
Actually I haven't visited an office yet, I've done it all online. I also have an anxiety disorder and don't particularly dig people. I saw a Social Security Doc yesterday, in Tucson. He was a neurologist too, I was a bit concerned about what I had read about the contracted Doc's, but he was kind, informed and aware. I was taken aback. So they now have 2 phych evals and this guy I just saw. I know this isn't going to be an easy process, but jeez! I'm on my resubmit now and expect to be denied. My case worker said if I was 55 it would be no problem but I'll be 50 in Feb.

I'm from Ohio originally and have been here 5 years and the health care here is not what I'm used to. I had better health care in Ohio with no insurance. I wont be talked down to by anybody! I have seen 2 of their Doc's this month and had to request to see the Neuro guy because they were basing my claim on my anxiety. It's just totally frustrating. I have tons of pictures of my hands and people willing to write letters, etc. I told my case worker at SS that it's ok, if I have to appeal until I'm 55, what the heck! I don't have anything else to do because I can't work!!

My paperwork all comes from the Arizona Department of Economic Security, Disability Determination in SALT LAKE CITY, UT! My first set came from Arkansas. I'm pretty sure I live in Arizona....Life is interesting to say the least!
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Old 09-09-2013, 06:56 AM #12
LIT LOVE LIT LOVE is offline
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You really need to research the Grid Rules indepth. The old link I had appears to be dead. The short explanation is at ages 50 and 55 the criteria lessens to be found eligible for SSDI. If you would be found eligible at 55, than it means you need to show better documentation to strengthen your case now. You're close to proving your case in other words.

Here's a decent link. : http://www.ultimatedisabilityguide.com/grid_rules.html
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Old 09-09-2013, 08:19 AM #13
ginnie ginnie is offline
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Default Hi pebbles

I hear your pain. I am so sorry you have developed this CPRS. To be looked over by your doctor and basically not listened to is awful. The process of getting disability is even worse, I know it, as I have been through that He__ too. You have to get a doctor that is going to follow through the whole process. I also would NOT meet some maybe doctor in a hotel room...are they crazy? That doctor isn't on your side.
If you post near where you live perhaps someone on NT can recommend someone that is knowledgeable about CPRS. There is help for it. Ketamine infusions have been used for our troops with good success rates. You need a team in place, doctors who actually work with each other to help your case. A lawyer at this point, to see you through the disability part would be a great relief to you. Go back to the state legal representative, I had mine involved through the process, and it seemed to speed things up a bit.
I hope you can find a doctor who really does know about CPRS. I will keep you in my thoughts and prayers. Don't give up, use that frustration to the good and find the team you need to have peace and some resolution in your life. ginnie
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