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 11-27-2010, 02:14 AM #1
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Ooo Beginning the process of disability/disability retirement/SSdisability

I cannot begin to say how helpful and information and thought provoking this RSD group has been to me.

My accident was 1/13/10 and it has been downhill since, but I believed everyone who said 'if you'd just wear the white support hose you'd be fine.' I even had a PA tell wearing jeans was the problem. Or if I was hungry enough(needing the money) I could go to work. Just put on your big girl panties and deal with it.
Everytime I would believe this, I'd take my own vaca time, go away by myself to limit the stress and responsibility and sure enough I would have few issues for a week, if you don't count not wearing shoes, not wearing sock or nylons, not getting in or out of my car 25 times a day, very, very limited walking, just reading or other non-stress activity! But each time upon returning, I took a couple of steps backwards in my ability to complete my work in the time it previously took. And I was wearing no shoes on the workroom floor and everyone was over looking it. As my workload even lightened, it took me longer. I'm old ok, but not that old. But in one ten day period, I went from one foot/leg involvement to two. That was a sucker punch I wasn't expecting.

I'm beginning to realize, aside from the black/red/blue feet, no shoes, no walking, burning/stinging that a big thing is the 'head' thing. I'm moving to the beat of a different drummer and this guy ain't banging out a samba. More like a lullaby. The stress of just turning my brain on in the morning results in increased symptoms, not counting putting my feet to the floor. That is after I've slept, it is difficult to get my brain into a sleep mode. I've gone from an 8 hour sleeper to a 2 maybe 3 hour quiet time. But staying within the confines of my 1200 sq ft home where I can rest at will, I'm getting by. But I'm still not wearing shoes, socks, not going to the grocery, not baking or cooking like before. My life today is nothing like my life before 1/13/10.
There are many mental tasks that are difficult, especially under seeming innocent stressors. Typing a note after walking to answer the phone is more difficult until I take time to calm my brain. That doesn't take into account typing each word 3 times to correct the inappropriate keys my fingers touched. Not the ones my brain said to touch! Remembering even the name of the point where I got my last injection is difficult if I'm recounting the story in routine conversation with others. Words don't come and the ones that do aren't the right ones.

So my question to all of you dear new friends, how do I enter into this process of being declared disabled to work. After a nerve block and two injections in my sacroiliac, my brain is so much less electrically charged, that I can do routine tasks and care for myself. I sometimes feel guilty for not working, then I remember, I'm not wearing shoes, no time pressure or speed required, simple 1 hour tasks are not an 8-10 hr working day,....etc, etc.
But to hear you all talk about the obstacles before you to get qualified, helps me to realize that many, many think if I'd just wear those pressure socks I'd be fine. I just haven't found one for my entire central nervous system or my brain for that matter.
I have a great doctor. And as of next week I'll have a lawyer. I was hoping to avoid that but I also didn't plan on RSD/CRPS. I have the US Dept of Labor, US Postal Service, Car Insurance all want their piece of the pie, or maybe piece of me. T'were God not on my side, I can see quickly slipping into hopelessness.
And my BFF says that I'm sometimes my own worst enemy because I don't have a normal reaction when I'm in pain. I laugh, I deny, I ignore, I definitely don't advertise and many times I save my 'steps' all up so I can do the one public thing and then pay the piper the next few days.

I guess I'm not ready to admit out loud or in public that I have a problem, but the reality is I do. I had a counseling session on Tues and he said 'you are an idealist.' I'm also the eternal optimist. Even when I'm shouting to my husband to go down on the corner and buy me some morphine. I know this to will pass.
So I guess I just wanted to say thanks for letting me listen in to your conversations, some from long ago, so that I might better prepare for the road that lies ahead of me.

thanks for letting me vent and say thank you,
with hope for tomorrow
pat e

Last edited by gramE; 11-27-2010 at 02:17 AM. Reason: I hit the wrong button, or I hit the right button too soon.
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Old 11-27-2010, 03:48 AM #2
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Hi Pat,

So sorry for all that you are going through. I am glad that you were able to find us here at NT. This is a wonderful, supportive, crew.

Mine is a WC case. I hate the red tape associated with that. I often think how much better my stress levels would be (which, we all know, makes RSD worse) if I didn't have to deal with WC and lawyers. Sounds like you've got waaaayyyyyy more of that beauratic crap weighing your case, and you, down. Thank God for your optimistic attitude......You'll need it to make it through this !
__________________

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Gee, this looks like a great place to sit and have a picnic with my yummy bone !
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gramE (11-27-2010)
Old 11-27-2010, 06:22 AM #3
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Quote:
Originally Posted by gramE View Post
I cannot begin to say how helpful and information and thought provoking this RSD group has been to me.

My accident was 1/13/10 and it has been downhill since, but I believed everyone who said 'if you'd just wear the white support hose you'd be fine.' I even had a PA tell wearing jeans was the problem. Or if I was hungry enough(needing the money) I could go to work. Just put on your big girl panties and deal with it.
Everytime I would believe this, I'd take my own vaca time, go away by myself to limit the stress and responsibility and sure enough I would have few issues for a week, if you don't count not wearing shoes, not wearing sock or nylons, not getting in or out of my car 25 times a day, very, very limited walking, just reading or other non-stress activity! But each time upon returning, I took a couple of steps backwards in my ability to complete my work in the time it previously took. And I was wearing no shoes on the workroom floor and everyone was over looking it. As my workload even lightened, it took me longer. I'm old ok, but not that old. But in one ten day period, I went from one foot/leg involvement to two. That was a sucker punch I wasn't expecting.

I'm beginning to realize, aside from the black/red/blue feet, no shoes, no walking, burning/stinging that a big thing is the 'head' thing. I'm moving to the beat of a different drummer and this guy ain't banging out a samba. More like a lullaby. The stress of just turning my brain on in the morning results in increased symptoms, not counting putting my feet to the floor. That is after I've slept, it is difficult to get my brain into a sleep mode. I've gone from an 8 hour sleeper to a 2 maybe 3 hour quiet time. But staying within the confines of my 1200 sq ft home where I can rest at will, I'm getting by. But I'm still not wearing shoes, socks, not going to the grocery, not baking or cooking like before. My life today is nothing like my life before 1/13/10.
There are many mental tasks that are difficult, especially under seeming innocent stressors. Typing a note after walking to answer the phone is more difficult until I take time to calm my brain. That doesn't take into account typing each word 3 times to correct the inappropriate keys my fingers touched. Not the ones my brain said to touch! Remembering even the name of the point where I got my last injection is difficult if I'm recounting the story in routine conversation with others. Words don't come and the ones that do aren't the right ones.

So my question to all of you dear new friends, how do I enter into this process of being declared disabled to work. After a nerve block and two injections in my sacroiliac, my brain is so much less electrically charged, that I can do routine tasks and care for myself. I sometimes feel guilty for not working, then I remember, I'm not wearing shoes, no time pressure or speed required, simple 1 hour tasks are not an 8-10 hr working day,....etc, etc.
But to hear you all talk about the obstacles before you to get qualified, helps me to realize that many, many think if I'd just wear those pressure socks I'd be fine. I just haven't found one for my entire central nervous system or my brain for that matter.
I have a great doctor. And as of next week I'll have a lawyer. I was hoping to avoid that but I also didn't plan on RSD/CRPS. I have the US Dept of Labor, US Postal Service, Car Insurance all want their piece of the pie, or maybe piece of me. T'were God not on my side, I can see quickly slipping into hopelessness.
And my BFF says that I'm sometimes my own worst enemy because I don't have a normal reaction when I'm in pain. I laugh, I deny, I ignore, I definitely don't advertise and many times I save my 'steps' all up so I can do the one public thing and then pay the piper the next few days.

I guess I'm not ready to admit out loud or in public that I have a problem, but the reality is I do. I had a counseling session on Tues and he said 'you are an idealist.' I'm also the eternal optimist. Even when I'm shouting to my husband to go down on the corner and buy me some morphine. I know this to will pass.
So I guess I just wanted to say thanks for letting me listen in to your conversations, some from long ago, so that I might better prepare for the road that lies ahead of me.

thanks for letting me vent and say thank you,
with hope for tomorrow
pat e

Hi Pat,

I have been reading your post and I just wanted to give a piece of advise in regards to filing SSD.

This is the process I followed, yet it is a Federal Benefit and I assume should not be different from state to state or employer to employer or even worse lawyer to lawyer but what I have read here people go through different experienes some that just leave me puzzled. Anyway this is what I was advised by my attorney. Step 1 file on my own if I get denied the first time which I did and most do, sometimes I have to question when I hear I got it in 2 weeks. Once you file they say you will get a ansewer in 90 days which is really correct. Step 2 when you get denied, I hope you don''t, call your attorney and it should be a disabilitiy attorney one who knows the disability arena. Then the process really starts. Once during the process they wrote a letter and said, not in these exact words "we feel you could at least try working part time, well first of all I did not know I could work PT but you can. I went out and got a PT job in my field and I did that immediately. The rest of the process was between my attorney and the SS Attorney, I never went to a IME(Indepentant Medical Examiner) never went into a court room only dealt with my SS Case Worker,who was excellant, at my local SS Office in my area that's how it works and my attorney. I was approved in 2 and 1/2 years. Received 3 and 1/2 years of backpay, back support for my minor children and I still have one who is a minor and she gets a check each month also plus my medicare. Once you get your "Fully Favorable Letter" the benefits start coming in very quickly within 30 - 45 days. Also very important do not give any attorney money to represent you in a disability case the Federal Goverment has a cap on how much they can get paid know matter how long, the amount of work they have to do it does not matter, the cap currently is $6000 and that SS will send them it directly out of your backpay. All this information comes in writing.

I found it not so hard to do for a couple of reason first I had medical that could drive you crazy. I also had a Lawsuit involved with my accident in addition to disability. My certified medical records was over 2000 pages. My surgeon and PM doctor helped with whatever I needed, I mean I almost lost my arm. I also followed every request they,SS, sent me. Like I said if they said go get a PT job I did it, if they needed a phone conference on a certain day I made sure everything stopped and I was there to take that call. Was always pleasant and repectfull to my case worker. Anyway my arm was saved and both my cases are over and currently not doing so bad health wise. I still work at that PT job I got over 2 years ago and it was the best thing for me it helps me feel like I am not just sitting home complaining because I have found myself in a situation I never thought in my life I would be in. One more point about working, you can only make a certain amount of dollars before they will begin to deduct from your check and be very carefull if you do decide to get a PT job while you are in the process of filing. The amount of dollars, it's not hours, is $980 a month gross, but check with your case worker for the most current figures.

Good Luck, if you have any other questions just ask.

Gabbycakes
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Old 11-27-2010, 08:33 AM #4
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Thank you so much for sharing your experience. Because I my age and applying for Disability Retirement, I am required to file for SS disability at the same time, but I do believe we still have a process of them(PO) finding a job I can do. I am not against working at all, but getting my symptoms under control and balance both is where I am now.

Have a great day.
pat e
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Old 11-27-2010, 12:22 PM #5
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Hi Pat,

When I became too sick to work, I went out on a WC disability leave of absence from my job. It took a year for me to get the treatments that I needed, and the rest I needed, for me to feel better enough to go back to work. You can go out on a WC leave from your job without regard to the Federal Disability end of things, and then decide after a while if you feel you are able to work again. A good attorney that is well versed in the laws of both WC and SSDI can help you with that.

In my case, my employer would only hold my job for me for one year. So I needed to go back when I did, or I would have lost my job and my family health insurance benefits.

Have you talked to anyone from your employee benefits group yet? Or are you afraid to? WC is really dicey. Insurance companies can be really evil, and not everyone believes you when you say you are too sick to work.

Ketamine infusions have helped me enormously - they are the reason I am able to work again. My RSD started from a torn rotator cuff and 2 shoulder surgeries, I had 8 stellate ganglion blocks, 1 lumbar block (because it spread), and 8 lidocaine infusions before I tried ketamine.

I truly wish you the best of luck. I remember how awful I felt when I first became sick like you. Don't ever, ever give up on trying to find the treatment to help you get better. And I would advise you to hire a really good WC lawyer to handle the legal end of things and then just try not to get too uptight when the usual denials and delays occur along the way. BTW, I use my regular insurance when WC denies my meds, doctors, PT, blocks, infusions, etc. My attorney has assured me that as long as WC denies the expense, it's fine for me to do that. I submit my co-pays to my attorney for reimbursement (which they usually need to submit in WC Court before I can get my $$ back).

XOXOX Sandy



Quote:
Originally Posted by gramE View Post
Thank you so much for sharing your experience. Because I my age and applying for Disability Retirement, I am required to file for SS disability at the same time, but I do believe we still have a process of them(PO) finding a job I can do. I am not against working at all, but getting my symptoms under control and balance both is where I am now.

Have a great day.
pat e

Last edited by SandyRI; 11-27-2010 at 05:03 PM. Reason: added info
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Old 11-27-2010, 12:39 PM #6
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gramE, your thinking sounds very similar to my wife's dealing with this horrible pain. She's been dealing with RSD sinse 2002. She worked full time for 4 years trying to find a doctor who would treat her all the while losing her ability to articulate her condition to the doctors who, because of this, shyed a way from her. She kept her RSD a secret from the family for the first 2 years. 2006 she broke down and could not work any longer. She did receive benefits from her employer in which she filed for SSDI in 2008 and back dated her last day of work to Dec. 2006. I've posted on this site that it was a four year battle for me to push for her SSDI when in-fact she filed in 2008, It just seemed like 4 years because her last day was in 2006. Suzy just received, last Nov. 2, a full favorable desision. Just like gabbycakes she will receive 3.5 years of backpay starting from June 2007 not Dec. 2006 because of her short term disability from her employer. She will receive medicare too. We lost our health insurance back in Sept. 2009 and have been paying for her care out of pocket sinse. We were told that her medicare is retroactive and will be backdated and compensated for much of the out of pocket costs over the past year or so.

My best advice for you gramE is start gathering all your doctor records and have your husband and yourself read them very closely. You really need to move the doctors in the direction that will benefit you the most. Make sure your lawyer is an expert in SS law not a part timer. Make sure your lawyer gets all updated records and have them give you an oppinion in what lacks in those records. Update your records every 6 months or so because when it comes to crunch time, you and your lawyer should pretty much know what the outcome should be. If it is positive and you lose your case you'll have good grounds for an appeal everytime. The process is a bit more complicated than just records. Others I'm sure will chime in.
I hope you feel much better soon gramE!!!

jim
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Old 11-29-2010, 10:57 AM #7
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Hi Pat,

My case was also a WC case, and under the advise of some old friends at BT, I went to the library and took out a book called " Nolo's Guide to Social Security". This was a tremendous help, followed it to the " T " and was approved in 6 weeks without the cost of a lawyer.

I know everyone/ every case is different but before I spend money on a SS lawyer who will take their cut, I'd at least look over this book. Oh, I also applied during my WC case as one really had nothing to do with the other except for the fact I could no longer work. My two cents, hope it helps

Dee
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Old 11-29-2010, 11:19 AM #8
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The issue with the lawyer is that US Dept of Labor is denying payment for procedures they've approved, and are paying my Dr. nothing for more than 90 days. I'm hoping to not need the lawyer, I've got all my ducks in a row, but it is getting sticky so I'm going for a consult. Thanks for the info, I might have to go to the library today, while the sun is shining!
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Old 11-29-2010, 12:21 PM #9
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WC pays all attorney fees - both the victim's and the insurance company. So if you hire a lawyer to help you with the WC end of things it won't cost you anything.



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The issue with the lawyer is that US Dept of Labor is denying payment for procedures they've approved, and are paying my Dr. nothing for more than 90 days. I'm hoping to not need the lawyer, I've got all my ducks in a row, but it is getting sticky so I'm going for a consult. Thanks for the info, I might have to go to the library today, while the sun is shining!
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Old 11-29-2010, 12:25 PM #10
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I'm going to my Congresscritter first.
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