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Disabled from RSD and SSA wants update.

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Old 02-20-2011, 10:13 PM   #1
Answer Seeker
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Disabled from RSD and SSA wants update.

Hello all,

I was finally diagnosed with RSD about 4 years ago. From reading some of the postings here I know that it was "normal" that I was misdiagnosed for several years before that.

After an injury and treatment, a specialist told me what I had was RSD and gave me a little information about it. The primary doctor I had at that time agreed, even though he had never brought up RSD before. Beforehand he had told me my pain was all in my head, since MRI tests, X-Rays, blood tests and everything else he could think of came back negative for a definite cause.

I applied for disability with Social Security and received my benefits. Now they have sent me an update form. It looks standard but what has me concerned is that I have a different primary doctor now and on the form Social Security wants to list whether or not I have discussed going back to work with my doctor (I have not), and any most recent treatments or hospitalizations.

My current doctor is one of those that doesn't believe in prescribing narcotic painkillers unless you have just been run over by a car and have broken bones protruding. So I treat my pain with ice and heat. It doesn't help much, but in my area the pickings are slim for doctors (I'm in a small town and can't drive far), and most seem to share this attitude of not prescribing narcotics for RSD pain. I don't ask for narcotics because I figure that will label me as a drug seeker. So I am not sure what my doctor will tell the SSA.

As for the hospitalization description Social Security wants, that was not related to my RSD, and I am afraid they will look at that and think I am "cured" or relapsed, if that even happens.

What I want to know is what to expect. Is this SSA update just routine, or should I expect them to look at me as a case they can just dispose of, since many people think RSD is not even a real syndrome or debilitating?

If I could work, I would. It would be welcome instead of the pain and irritation and constant soreness of RSD.

Does anyone have experience dealing with Social Security disability updates? I know some people have had to get a lawyer just to get their benefits. Do I need to get a lawyer for this update?

Thanks in advance for any help.

Last edited by Answer Seeker; 02-20-2011 at 10:17 PM.

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Old 02-23-2011, 10:58 AM   #2
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Re: Disabled from RSD and SSA wants update.

first I really.. most of us are afraid of ice as it tends to make it worse.. second have you researched rsd and rsd in your state to see criteria and guide lines.. this sounds like a normal form but it can hurt you if your rsd is not properly documented. as this being a real disorder well you will be surprised how many people ahve rsd and how real it is .. this is nerve damage that spreads and there is proof of this .. i myself have had to document proof of this, via picture , multiple drs visits, mri,s and emg, along with a three phase bone scan wich is the most solid proof i can give as far as paper work goes... have you seen a neurologist , pain managment dr if not why. ask your dr. Be not affraid to ask questions.. with me i have no choice but to take narc. im controlled by ins. but have you had physical therapy,,.. google rsd/crps take time to look in as many sights as possible . all the info you r looking for is at your finger tips. so speak with you dr , research, and ask questions, and even ask questions here ,we will help how ever possible....good luck god speed

Old 02-25-2011, 02:31 AM   #3
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Re: Disabled from RSD and SSA wants update.

I was diagnosed with RSD in 2005, after having tendonitis (DeQuarvains) surgery in my right wrist. It is now in my right hand and has spread up into my forearm..and caused me to develop Lymphedema in my legs and feet....There is NO WAY I could put ice or heat on my hand, wrist or arm. I have to wear a glove on my hand 24/7....I cant have air touch my hand and if the heat from the sun beating down, touches my hand I am in excruciating pain. I have had my RSD doc for 3 yrs now. Before I found her, I was just goint to a pain mgmt doc who only wanted to keep me drugged up all the time.
Anyway, I just received, filled out and sent back my paperwork for SSDI also. I dont know what my doc will say either, I haven't talked to her about going back to work, so I dont know what she will say.
I dont think she would allow it, but I'm not sure. It is the chance we have to take. SSDI is not a permanent thing. At least that is what I was told when I went to my hearing. The judge said that I would have to be reevaluated every 4-5 yrs and it is the time now. I guess I will have to deal with whatever comes.
I, myself know that with RSD and Lymphedema I could NEVER hold down a job. I would have to find something to do with one hand and not be on my feet and legs for long periods of time....but I will have to deal with it, if it comes down to it.
I wish you luck and hope it all works out for the better.....praying for low to no pain days ahead.

Old 03-05-2011, 11:27 PM   #4
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gettinghopeless HB User
Re: Disabled from RSD and SSA wants update.

Absolutely speak with an attorney experienced in dealing with social security. IF you didn't have a lawyer when first applied getting one that only does soc sec would be best. If you keep a pain journal that can be used, if not, start one and document daily what level of pain you are experiencing and how it effects your daily activity. Not that I can't keep the house clean, but detail like pushing the broom and-or vac strains my shoulder and if I do this activity more than 5 mins I have to spend an hour sitting with a heating pad on my shoulder to relax it. Another idea is to see a therapist who will listen to you and document your symptoms and how they effect your daily life and maybe one that will work with a psychiatrist to help you get the meds your pcp won't. I say this as rsd\crps effects us emotionally as well as physically and when we are in constant pain it effects us mentally as well and just keeps a cycle going of depression,increased pain, more depression due to more pain and on and on and on. I'm thinking about showing my pcp info from the internet on rsd\crps and also posts from real people so my current jerk dr. can get it thru his head that this disorder causes a lot more pain and problems than he thinks. When docs aren't educated about this stuff they continue to act ignorantly. Also get letters from family and friends that state in detail how you are effected by this problem. Theres also a lot of good info on the internet about how soc sec works and what they look for when reviewing claims. Good luck and I hope everything goes your way.

Old 03-07-2011, 06:09 PM   #5
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Re: Disabled from RSD and SSA wants update.

i am surounded by disability insurance short term/ long term ..comp and ssdi
they all are looking for regular updates.. doesnt matter why you are on it they are looking for some reason to take you off.. so i agree that we should document every thing see drs who can help us ..and we even have to be careful of what we do on good days as they will have photographers trying to get a picture of us in that one moment that we might feel normal. this unfortunately adds to our stress wich makes our condition worse..we are suffering and they are affraid we are faking it just for the money..ha look at our world how twisted it is..and shame on those who would fake it leaving those who suffer from any condition have to suffer ridicule and be observed so much we are affraid to live what ever life we have as well. as rsd sufferers we know pain as it IS our life more so than back pain from herniated discs or migrains and dental pain..because for alot of us there is no escape from the pain..right down to pain killers. and it infects our lives from finances to relationships to simple tasks. and then we have to be watched by these companies made to feel like we are crimanals. there is the insult to our injury. so like i said before it is not strange or out of ordanary for them to ask for updates ..they have thier right as thy are paying and they want to make sure..its just insulting .belittling,heart and soul breaking. welcome to our world sorry... i wish all the very best for we have a fight ahead of us and we will need to be strong to survive.. be well all and good luck

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