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 02-06-2015, 09:51 PM #11
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Just to be clear SS doesn't ever request a FCE, but when you have a diagnosis that most ALJs will have very little experience with, evidence of specific functional limitations can be a major asset--at least that was my experience.

Some doctors will fill out RFC forms without a FCE, but it certainly helps with your documentation.

http://www.disabilitysecrets.com/rfc...statement.html

In regards to your AOD, you certainly don't need to change it to reflect receiving a diagnosis. I'm not sure how familiar you are with the Grid Rules, if at all? Basically there are three ways to be approved. 1)Meet an Impaired Listing 2)The 5 step process 3)Via the Grid Rules. It can be much easier qualifying for the Grid Rules at 50 (and easier still at 55) than going through the 5 step process (which is how you were just denied.)

So long as you can prove your skills are not transferable, you no longer have the burden to prove you can't perform SGA at any job, so long as your AOD reflects your 50th bday (or possibly 6 months before your 50th bday at an ALJs discretion.)
http://www.disabilitysecrets.com/top...grid-rules-age

In my personal opinion, an ALJ is going to want to see extensive medical documentation AFTER you've been diagnosed. (By the time you appeal and hopefully receive a remand to the ALJ, you'll have time to do just that.)

You might have to decide if the fight for extra backpay is worth further delaying approval. I'm just trying to give you fair warning now.

What your doctor said to you in person will not necessarily match what is in his or her notes, as I'm sure you know. With your background you're in a much better position to self advocate than most patients.

Good luck.

Last edited by LIT LOVE; 02-06-2015 at 09:59 PM. Reason: clarification
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Old 02-06-2015, 10:55 PM #12
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Well I'm still over a year away from 50, so that part is out. My primary goal is/was/has been/forever will be to get back to work. I began bawling like a baby at the doctors office today simply because all I want is my life back!
I guess I assume that when functional ability is discussed it's actually put into your records. I'm finding that is not the case. Any suggestions on how to ensure it is included??
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Old 02-07-2015, 12:17 AM #13
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Well I'm still over a year away from 50, so that part is out. My primary goal is/was/has been/forever will be to get back to work. I began bawling like a baby at the doctors office today simply because all I want is my life back!
I guess I assume that when functional ability is discussed it's actually put into your records. I'm finding that is not the case. Any suggestions on how to ensure it is included??
You telling the doctor what you are no longer capable of and him noting it is vastly inferior to going through a FCE.

When I went through a FCE it helped prove that when I perform fine motor skills with my dominant hand it starts the cycle of pain and swelling within just a few minutes. My physical therapist used water displacement to measure my swelling after certain intervals. What should have taken a few hours in one day to complete had to be spread out over several days because I begin to flare with any activity. When my range of motion and grip strength was tested only once, they were within normal ranges, albeit substantially lower than before I developed RSD/CRPS. When those tests were repeated at both short intervals and longer intervals, my function dropped off substantially. This backed up what I had self reported and what a family member had written in her questionnaire for SS.

You want to get as much medical evidence added into your record up until you file your appeal. Even if the AC does not review the new evidence, it's apparently a loophole that it will be included in your record if you have to pursue your claim to federal court.

By the time you receive a decision from the Appeals Council and receive a new ALJ hearing, you'll very likely be past your 50th bday. (Assuming you receive a remand, of course.) You won't be far enough past it to accrue very much backpay if you decide to amend the AOD though, and so your attorney might not encourage it--just something to keep in mind. You really need to be prepared that even in a best case scenario, and you do receive a Fully Favorable Decision, it could be a year or even two before you receive any benefits. The Appeals Council very rarely issues a Fully Favorable decision.

Returning to some type of work should of course be your goal. Whether or not that is realistic, is another matter. If you utilize the services of a Vocational Rehab Counselor, he or she might be able to help determine if that's a possibility--they will send you out for testing if needed. In some scenarios there might even be help with living expenses while training. You'd also potentially have access to jobs that would attempt to accommodate your special needs.

Depression is absolutely a component of RSD/CRPS. And not only are you trying to deal with a devastating diagnosis, you also moved recently and have the financial complications of being disabled and not working. These are individually incredibly stressful. Combined together it can be overwhelming. I highly recommend seeing a pain psych doc, even if only temporarily.

Last edited by LIT LOVE; 02-07-2015 at 12:33 AM.
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Old 02-07-2015, 09:05 AM #14
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Finally got in to see a PCP after relocating from TN to IL. Explained everything that was going on since my fractured patella in Sept. 2013; diagnosed peroneal nerve palsy April 2014; pain; numbness; tingling; swelling; etc.
She said "I'm leaning towards RSD due to all your symptoms and history of surgery/injury but I would like to have it confirmed by an ortho." Ordered gabapentin for now; will add amitriptyline in 2 weeks; no pain management referral because she wants to see if the gabapentin/amitriptyline helps enough. Told me "Don't expect miracles. I can't promise functional return."
I had zero achillies reflex; zero plantar reflex; not sure what patellar reflex tested as because she knocked me several times there.
From my little bit of research on RSD/CRPS, I believe because of the diagnosed nerve damage it falls more towards CRPS and I need to see someone with more experience in both diagnoses...anyone with more information/experience in this? What say you??
After reading your post I say it does sound like CRPS. If that's the case I'm sorry to report that there's no known cure. Only medicating the symptoms to manage the pain.
Your doc is on the right track only I also take Cymbalta as well as Gabapentin and Amitriptyline. That cocktail works fine for me and keeps me from going the opiate route.
Best of luck to you finding relief...
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Old 02-07-2015, 11:45 AM #15
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After reading your post I say it does sound like CRPS. If that's the case I'm sorry to report that there's no known cure. Only medicating the symptoms to manage the pain.
Your doc is on the right track only I also take Cymbalta as well as Gabapentin and Amitriptyline. That cocktail works fine for me and keeps me from going the opiate route.
Best of luck to you finding relief...
I think one of our first steps is ruling out a new knee injury (last ortho suggested that possibility in July, but haven't been able to get into a doc for an MRI) as well as ruling out DVT. While I had some significant swelling/discoloration/pain when I was on a cruise (celebrating my youngest daughter's HS graduation...expecting I would have been fully recovered when I booked it), and ship medical did a d-dimer test that was negative, nothing excludes a DVT like a venous doppler flow study My new PCP wants that stuff evaluated before doing much more treatment. I only hope no one wants to do another EMG/NCS...that about set me over the edge!!!! Maybe I can get some meds to perform that
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Old 02-07-2015, 11:56 AM #16
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Originally Posted by LIT LOVE View Post
You telling the doctor what you are no longer capable of and him noting it is vastly inferior to going through a FCE.

When I went through a FCE it helped prove that when I perform fine motor skills with my dominant hand it starts the cycle of pain and swelling within just a few minutes. My physical therapist used water displacement to measure my swelling after certain intervals. What should have taken a few hours in one day to complete had to be spread out over several days because I begin to flare with any activity. When my range of motion and grip strength was tested only once, they were within normal ranges, albeit substantially lower than before I developed RSD/CRPS. When those tests were repeated at both short intervals and longer intervals, my function dropped off substantially. This backed up what I had self reported and what a family member had written in her questionnaire for SS.

You want to get as much medical evidence added into your record up until you file your appeal. Even if the AC does not review the new evidence, it's apparently a loophole that it will be included in your record if you have to pursue your claim to federal court.

By the time you receive a decision from the Appeals Council and receive a new ALJ hearing, you'll very likely be past your 50th bday. (Assuming you receive a remand, of course.) You won't be far enough past it to accrue very much backpay if you decide to amend the AOD though, and so your attorney might not encourage it--just something to keep in mind. You really need to be prepared that even in a best case scenario, and you do receive a Fully Favorable Decision, it could be a year or even two before you receive any benefits. The Appeals Council very rarely issues a Fully Favorable decision.

Returning to some type of work should of course be your goal. Whether or not that is realistic, is another matter. If you utilize the services of a Vocational Rehab Counselor, he or she might be able to help determine if that's a possibility--they will send you out for testing if needed. In some scenarios there might even be help with living expenses while training. You'd also potentially have access to jobs that would attempt to accommodate your special needs.

Depression is absolutely a component of RSD/CRPS. And not only are you trying to deal with a devastating diagnosis, you also moved recently and have the financial complications of being disabled and not working. These are individually incredibly stressful. Combined together it can be overwhelming. I highly recommend seeing a pain psych doc, even if only temporarily.
This whole SSDI confuses the crud outta me! I think with my initial app, they determined my MDI was not severe enough to prevent SGA. I believe that is in part to MD documented (undocumented) severity levels as well as omission of function (good, bad or indifferent). My PT records were not requested or reviewed. THOSE would have shown/documented my function (or lack thereof) as well as my intermittent swelling/inflammation/pain. At any rate, I am working on compiling every document I can to submit with my initial reconsideration/appeal.

I am working on obtaining a pain management referral. One of my close friends sees PM psych, so I might see about getting a referral to the doc she sees to coordinate the depression aspect. I'm certain I will include that added diagnosis as well as the RSD diagnosis on reconsideration request.

My biggest confusion comes in with regard to Function Report and FCE. While I was sent a work history report to fill out, I was not sent a Functional Report. I'm not sure if I should just print one out, fill it out & send it in with my reconsideration or wait for them to send me one. As for the FCE, I imagine none was requested because of the aforementioned conclusion on severity of MDI. Perhaps I should request another EMG/NCS as well. Ugh.
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Old 02-07-2015, 12:52 PM #17
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Originally Posted by Always_Believe View Post
This whole SSDI confuses the crud outta me! I think with my initial app, they determined my MDI was not severe enough to prevent SGA. I believe that is in part to MD documented (undocumented) severity levels as well as omission of function (good, bad or indifferent). My PT records were not requested or reviewed. THOSE would have shown/documented my function (or lack thereof) as well as my intermittent swelling/inflammation/pain. At any rate, I am working on compiling every document I can to submit with my initial reconsideration/appeal.

I am working on obtaining a pain management referral. One of my close friends sees PM psych, so I might see about getting a referral to the doc she sees to coordinate the depression aspect. I'm certain I will include that added diagnosis as well as the RSD diagnosis on reconsideration request.

My biggest confusion comes in with regard to Function Report and FCE. While I was sent a work history report to fill out, I was not sent a Functional Report. I'm not sure if I should just print one out, fill it out & send it in with my reconsideration or wait for them to send me one. As for the FCE, I imagine none was requested because of the aforementioned conclusion on severity of MDI. Perhaps I should request another EMG/NCS as well. Ugh.
SS will not ever request you undergo a FCE. They will also not request your docs fill out RFC forms. (RFC forms WERE part of the application in the past.) You can submit this information nevertheless. I don't remember SS having a "function report". They do request information about your "Activities of Daily Living" though. http://www.disabilitysecrets.com/res...ily-living.htm

I was confused, btw! I thought your denial letter was after an ALJ hearing. Sorry about that. Some of my earlier posts don't apply now! The Grid Rules will likely come into play if you end up at an ALJ hearing.

It was unlikely for you to be approved at the first stage because you don't meet an Impairment Listing. In theory, the adjudicator can rule in your favor if your impairment/s "equal" a listing.

Have you read the Blue Book? If not, THIS SHOULD BE THE PLACE YOU START: http://www.ssa.gov/disability/profes...ltListings.htm
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Old 02-07-2015, 02:01 PM #18
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SS will not ever request you undergo a FCE. They will also not request your docs fill out RFC forms. (RFC forms WERE part of the application in the past.) You can submit this information nevertheless. I don't remember SS having a "function report". They do request information about your "Activities of Daily Living" though. http://www.disabilitysecrets.com/res...ily-living.htm

I was confused, btw! I thought your denial letter was after an ALJ hearing. Sorry about that. Some of my earlier posts don't apply now! The Grid Rules will likely come into play if you end up at an ALJ hearing.

It was unlikely for you to be approved at the first stage because you don't meet an Impairment Listing. In theory, the adjudicator can rule in your favor if your impairment/s "equal" a listing.

Have you read the Blue Book? If not, THIS SHOULD BE THE PLACE YOU START: http://www.ssa.gov/disability/profes...ltListings.htm
Okay, what is an RFC? And how do I go about that? How do I get my doc to fill out an FCE? Is that form available online to download?

From my understanding of my denial letter (from initial app), I do meet one of the impairment diagnoses. Just was not evaluated to prevent me from SGA (most likely due to not enough information regarding my functional limits). I never got anything specific to ADL's, only what was on the initial app. And now I have 2 more diagnoses to add.

As for the Function Report, I found it online when looking into the reconsideration/appeal procedure. I downloaded it and have been working on filling it out/re-filling it out/going over every little thing I can/cannot do. I think I read where ssa used to send it out regularly with work history report. Perhaps they still do but did not feel it warranted in my case due to the omission of functional capacity in the documents they received.
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Old 02-07-2015, 03:54 PM #19
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Okay, what is an RFC? And how do I go about that? How do I get my doc to fill out an FCE? Is that form available online to download?

From my understanding of my denial letter (from initial app), I do meet one of the impairment diagnoses. Just was not evaluated to prevent me from SGA (most likely due to not enough information regarding my functional limits). I never got anything specific to ADL's, only what was on the initial app. And now I have 2 more diagnoses to add.

As for the Function Report, I found it online when looking into the reconsideration/appeal procedure. I downloaded it and have been working on filling it out/re-filling it out/going over every little thing I can/cannot do. I think I read where ssa used to send it out regularly with work history report. Perhaps they still do but did not feel it warranted in my case due to the omission of functional capacity in the documents they received.


There is a big difference between a Medically Determinable Impairment and meeting the requirements of an Impaired Listing. The language of these ruling are very precise. It is confusing.

If you meet the requirements for a Listed Impairment there is no further requirements for approval. The issues of former work or any work are not addressed. The Listed Impairments are found in the Blue Book, which I linked to in my last post #17. RSD/CRPS is not a Listed Impairment. SS's ruling about how to evaluate RSD/CRPS (which I linked to in post #7) states, under "Evaluation of the Claim", that the sequential process is used (what I referred to earlier as the 5 Step Process.) It is still worthwhile to read the ENTIRE Blue Book, so that you can get a good idea of what SS needs you to document.

There are 3 ways to be approved. 1) Meet a Listed Impairment 2)Via the Grid Rules 3)The 5 Step Process. Right now, you're trying to prove you qualify through the 5 Step Process. Should you choose to amend you Alleged Onset Date to when you turn 50, than your claim would be evaluated via the Grid Rules.

Section C of The Adult Function Report is where you list your Daily Activities. I have no idea why you weren't sent these. Perhaps it was determined you didn't have enough medical evidence proving the severity of your disability to get that far in the process. There is also a 3rd party Adult Function Report which you'd have your daughter fill out. I don't know if it's appropriate to send those in before requested? (I'm rereading the long thread at SSDfacts. In post #54 you stated "Not sure why a Function Report would NOT have been requested given that was pretty much the reason for denial." I disagree that your subjective reporting would have made the difference between you being approved or not. The medical documentation needed to prove the severity of your disability prevents even sedentary work is substantial.)

There are 2 versions of RFC forms--physical and mental. You simply ask your doctor to fill it out. Some will charge a small fee, some will require a Functional Capacity Evaluation before filling out the forms. Some may perform the FCE themselves, some might send you to another doc or physical therapist. It is MUCH better to undergo a FCE, the results of which will be put into a report, and then have the RFC forms filled out IMO, but ESPECIALLY in your scenario with new docs and a new diagnosis. Docs can over or under estimate your Functional Capacity--some are little better than guesswork. SS only gives weight to your docs opinion when you have an established history--which you don't have.

Not to make this more confusing, but SS will perform a RFC assessment with an internal medical consultant, and an ALJ is the final authority on setting the RFC rating. By undergoing FCE testing, which your doc/s will then use to fill out a RFC form, will help the SS medical consultant give you an accurate RFC assessment, and potentially give an ALJ the evidence to set your RFC rating for less than sedentary work (which would give you a Fully Favorable decision back to your AOD.)

http://www.disabilitysecrets.com/rfc-win.html

Sorry if this info overload, but all of the above is very important.

Last edited by LIT LOVE; 02-07-2015 at 04:35 PM. Reason: major edit
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Old 02-07-2015, 05:03 PM #20
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After reading your post #63 on SSDfacts, I would hold off sending an Adult Function Report until requested. Why? Because without meds or treatment, your current function is not an accurate reflection of your potential function, so I just don't think it will help you at this point.

The Listing Impairment that you might be able to qualify with is the Musculoskeletal System, if there are structural issues that can't be repaired with surgery and you would require the use of a walker, crutches or wheelchair long term. SS does factor the potential effects of treatment though. So, when your doc claims you're refusing ankle surgery that should resolve your difficulty walking unassisted, SS will likely use that to deny you.

http://www.ssa.gov/disability/profes...etal-Adult.htm

"I. Effects of treatment.

1. General. Treatments for musculoskeletal disorders may have beneficial effects or adverse side effects. Therefore, medical treatment (including surgical treatment) must be considered in terms of its effectiveness in ameliorating the signs, symptoms, and laboratory abnormalities of the disorder, and in terms of any side effects that may further limit the individual.

2. Response to treatment. Response to treatment and adverse consequences of treatment may vary widely. For example, a pain medication may relieve an individual's pain completely, partially, or not at all. It may also result in adverse effects, e.g., drowsiness, dizziness, or disorientation, that compromise the individual's ability to function. Therefore, each case must be considered on an individual basis, and include consideration of the effects of treatment on the individual's ability to function.

3. Documentation. A specific description of the drugs or treatment given (including surgery), dosage, frequency of administration, and a description of the complications or response to treatment should be obtained. The effects of treatment may be temporary or long-term. As such, the finding regarding the impact of treatment must be based on a sufficient period of treatment to permit proper consideration or judgment about future functioning."

Last edited by LIT LOVE; 02-07-2015 at 05:23 PM. Reason: sorry for the multiple edits
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