It's a start...
 

CRPS is the same syndrome as RSD. I saw your post on SSDfacts and then saw this post... ;)

RSD is the same as CRPS type 1. CRPS type 2 is Causalgia. Symptoms, diagnosis, and treatment are the same...but in type 2 there is actual damage to a nerve that is not present in type 1. It can be confusing...but both types of CRPS are the same condition. RSD is the "old" name for the condition but is the one that most of the doctors in my area (IL) seem to use. I have type 1/RSD.

Oh...and I've even noticed a lot of doctors use RSD for type 2 CRPS...using it interchangeably like CRPS for both types rather than specifying whether it's type 1 or type 2. I used to get frustrated by the failure of doctors to use the current name...but gave up the battle and now just use RSD myself because it's what all of my doctors have used and it's one less letter to type or say...lol.

So because I have diagnosed nerve damage, mine would be Type 2??? My PCP is a fairly new doc...apparently IL uses the 'old' lingo. Where in IL are you? I'm in Harvard, IL
Thanks for your help! This is so confusing....

Having a CRPS I or II diagnosis will not make any difference to an ALJ compared to an RSD diagnosis.

If you haven't reviewed this SS ruling, start here:
https://secure.ssa.gov/poms.nsf/lnx/0424580025

I'm not sure how much this will help, but at least scan this as well: http://www.disabilitysecrets.com/soc...ility-rsd.html

I think one of the toughest issues with a RSD/CRPS diagnosis with regards to applying for SSDI is that there is often a significant amount of optimism in the doctors notes, especially in the first few years. While it is true that technically you should qualify if you're unable to work for at least a year, and SS could set your CDR at a year, it's probably more likely that it'll take a few years for approval. Of course the standard drops a bit when you turn 50, so you should definitely research the Grid Rules and determine if it would make sense to either amend your Alleged Onset Date (some ALJs will allow you to use the age 50 grid six months prior to your bday) or even start a second application.

I'm not sure if you've undergone a Functional Capacity Evaluation, but you really need as much non-subjective evidence as possible. While the ALJ does determine RFC, it sure helps to have a FCE to back up why you can't perform even SGA.

The fact that you're starting with a new doctor could also really impact how long it'll take you to amass an overwhelming amount of evidence for approval. And of course, it would be even better if your medical team could help to return your function, so that you could return to work. (You could still pursue a closed period award going back to your original Alleged Onset Date.)

Of course, I could be wrong about the likelihood of a relatively fast approval, but it's best to try and prepare for the long haul when dealing with any SSDI application, IMO.

Glad to hear you got in with a PCP. I hope the gabapentin, amitriptyline combo brings you some relief. I find nortriptyline helpful. My neuro prefers it, saying it has fewer side effects. If the amitriptyline makes you feel bad you could always try a different TCA. At least now you might get some good sleep and we know that helps everything.

Keep hanging in there, :hug:
Littlepaw

Well it's an added diagnosis since my first application. I applied (1st time) in late Oct. 2014 & received my denial Jan. 2015. Pretty much have MDI in my peroneal nerve palsy diagnosis, just not enough evidence of functional limitations


My new doctor made it a point to say "Don't expect miracles. I can't promise functional return." One of the many reasons I stated I was there for is to have a physical form completed for nursing school. She wouldn't complete it as she is thinking I am too limited to perform the necessary tasks. However, she also did not give me a pain management referral because she is thinking the gabapentin/amitriptyline combo will be enough. Time will tell with that, but I seriously doubt it, unless the cause of my knee pain is due to another injury, in which case would be due to the peroneal nerve damage.
I did not have a FCE, nor did I even get sent a Functional Report to fill out. I feel I will have some problems on the reconsideration level due to the medical records being a bit shy on the function being addressed. However, my PT records were not obtained for my initial application either. While I can see an adjusted AOD, my AOD on initial app was 10/13/2013 relating to my knee fracture. The peroneal nerve damage would directly correlate with RSD diagnosis and the nerve damage was diagnosed 4/2014. Do you think they would want to change it to 2/2015 to reflect the RSD diagnosis? Ugh. I hate it when people that take advantage of these programs/pain medications totally ruin it for those of us who need it!!!

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.

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.

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...

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

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.

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."

Definitely confusing!! I am still trying to figure this all out! I guess my thought was with the "The medical evidence in file shows that your condition does cause some restrictions..." statement on my denial letter, I have a MDI that just per documentation does not meet the severity SSA is looking for.

The diagnosis on my initial app did not include RSD/CRPS, only patella fracture, meniscus tear & peroneal nerve damage. I will be adding the depression and RSD to my reconsideration request.

But if I amend AOD to when I turn 50, first of all: I don't even turn 50 for another year and a half; secondly: how is that even possible???


So my doctor's office has access to the RFC forms? Or do I download/print them and take them to the doctor? If I download/print them, are they found on the SSA site?
I can certainly make an appointment with my TN ortho for a follow-up/re-check visit if that helps the longevity of care. Sadly, I could no longer afford $2300/mo for COBRA or travel 500+ miles for continued care. I, too, hate the lapse in care.

It was knee surgery and considering I subsequently underwent surgery (performed by a different ortho) for that same diagnosis (given by the ortho that erroneously documented I 'refused'), does that factor at all? Would that be something I can discuss with ALJ? I actually told the first ortho I would "do whatever it takes to get my life back", a sentence I continue to repeat today. I would much rather be doing what I have loved and wanted to do since I was 5 years old than have my daughter on stand-by when I shower & help me get my pants on.

Currently, there has been no surgical recommendation for my nerve damage. PT has been recommended/ordered and performed. I actually purchased a recumbent bike to work on my quad strength at home, but without a current MRI to determine if there is new injury or not, I am reluctant to potentially cause more damage.

Finally getting a PCP and an ortho referral, I am hopeful I will be able to obtain updated records within the 60 day time frame for reconsideration. Failing that (since you are so knowledgeable & helpful :Thank you:), would I submit a new application with AOD reflecting the peroneal nerve damage diagnosis (4/2014) or the RSD diagnosis (2/2015) (which would definitely take more time to determine 12 months or more) or both/all?

My apologies for such a lengthy post and the ongoing continued questions. And many many thanks for your assistance!

"This confuses me a bit but what I believe you are saying is the lapse in seeing an MD is my downfall. So the fact that I could not afford an MD until such time as I did see one (and received the diagnosis at that visit) will not really come into play with my appeal...???"

It's MOST LIKELY your downfall for a fast approval IMO. There are certain illnesses where this is not the case--pretty much those that qualify as Impairment Listings found in the Blue Book, and this is why it can get confusing. You have a different set of requirements. Assuming your biggest current health issue is RSD/CRPS, you're newly diagnosed with no history of how you'll respond to meds or treatment. If you do a good job of documenting your case between now and your ALJ hearing, it's totally conceivable that you could receive a Fully Favorable decision and receive backpay to your Alleged Onset Date.

If you are still on crutches and can not walk without them, that MIGHT be a game changer for a faster approval.

"With a new app after I turn 50, would I have the same AOD as it relates to my original app?"

No. You have to have an AOD on your 50th bday or later (or 6 months prior IF an ALJ allows it). So if you stick with your current application, and current AOD, the standard for approval will not decrease. (An ALJ doesn't actually need your permission to change your AOD btw, but then it becomes a Partially Favorable Decision. So, most often the applicant agrees to the change, a Fully Favorable decision is made, and you are unable to appeal the older AOD.)

"Found the RFC forms (). Still confused about the FCE. Whom do I request that from? Is there a form I missed for that?"

You ask your doc if he or she feels a Functional Capacity Evaluation would be appropriate. If you undergo a FCE, the doc or pt will generate a report showing the results.

It is an incredibly difficult process. I don't mind contributing if I can help. If you choose to hire representation you still need to be involved, but to a lesser degree. Some attorneys are very good and you might want to check out local non attorney reps as well. Some attorneys will only look at your file half an hour before walking into an ALJ hearing--way too late to help you in many cases. Allsup has non attorney reps and they have a good rep for being hands on, which I think might make your life easier.

I received a Partially Favorable Decision for a closed period award where I had attorney representation, and then won a Fully Favorable Decision pro se several years ago. It's a good idea to have a rep in most cases... ;)

Your daughter is probably just as likely to kick her bf out. How would he react if she has to face a devastating illness at some point? (I'm not sure I'd bring this up to her, but you get the point.) It is intrusive to be dependent financially and physically on anyone...

Be active about your treatment--both physical and mental. Go to a pain psych doc to help learn some strategies in coping with a permanent disability. Get food stamps if you're able (or food banks) and research any other financial programs you might qualify for. Do things to help around the house when you're feeling at your best. If it means getting up for 5 minute intervals to make dinner to help out, or fold laundry in bed, or make cookies as a surprise--great. You might want to check to see if there are any local housing options you might qualify for--even with long wait lists, it might be a good idea long term.

You shouldn't be prescribed pain meds for a month to determine a baseline. I get it's tough.

If all you can manage is 5 minutes ata time, once an hour or every four hours, so be it.

I got the impression you were living in your daughter's home? Is your home sitting empty? You might consider renting it out if that's the case.

Ugh! I am so sorry you are going through so much. Remember, you are one tough cookie. A thought on finances, not everyone would want to do this but in some situations it can be a big help...many counties have a program for people who cannot afford to pay their property tax due to disability. You have to do the requisite paperwork of course because on this program homeowners don't pay the tax so a lien is put on the home but does not get called in until the home is sold. Messes things up for passing the house on but as I said this does help some people in some situations. I have known of people doing when medical expenses overtook what they could pull off on limited income. God knows property taxes can eat a monthly budget. I don't know that you have to have approval on SSDI to get this. In our county you did not. Not every disabled person has it as we know. I hope things improve for you soon!

Sending Healing Love, :hug:
Littlepaw

Wow! That stinks. I would not have thought the program here was so much more generous than elsewhere. Austin likes collecting its dollars as much as anyone and taxes are regularly jacked up on account of the coolness factor affecting real estate. I guess the program there is not a lien program? I think the county here just figures they'll get it eventually...

hugs, Littlepaw

They're living in your home rent free is a whole DIFFERENT story. My 23 year old son came home for almost a year while finishing his degree. I did all the cooking and he did all the errands, all the cleaning, walked my dog twice a day, and took me to my doc appointments. He always made sure there wasn't a conflict before making plans. This wasn't me being demanding either.

You can't expect either to support you emotionally though--it's too draining. If you need to vent do it here or with a therapist. --I'm not saying not to ever discuss things but you have to be careful.

If she's helping temporarily, fine. But she can't/shouldn't change her life's course for you.

If she decides to leave then you can rent a room or two out and use the money to get a housekeeper. You might also qualify for some in home assistance.

Even having help come every other week to do major cleaning is a tremendous help.

If they're not voluntarily contributing in a meaningful way, then you need to decide what expectations you have and perhaps figure out an appropriate amount of time that needs to be spent in exchange for rent. Help can be had for $10 per hour or less in many places. Even if you want to be generous and give them more than the going rate, figure out what this breaks down to in rent. If either were working it might be a different story, but they shouldn't come and go as they please. How old are they, btw???

My son made sure he checked with me before going on trips and before taking a new job across the country because he knew it would complicate things for me since I was expecting to undergo several surgical procedures. I don't ever want him to feel like he needs to change his life plans for me, and I worked things out, but I appreciate that he cares enough to at least ask!

You do need to learn to adapt as much as possible. Hopefully as new meds are added you'll become more functional... In the meantime, would you be capable of doing more if you had a wheelchair at this point? Would you need mechanical help getting into the wheelchair? (It doesn't mean you have to use it all the time if you're concerned about losing more function.) If your issues are mostly with your lower body, than you need a comfortable set up to do things like meal prep while sitting. If that's impossible, consider Meals on Wheels for yourself. If you can't vacuum, consider a Roomba, etc.

Have you looked into swimming/pt in a warm pool? This might be a big help with increasing your function.

Have you checked to see if there is a ride service for the disabled locally?

You might want to consider buying down into a smaller home with less upkeep and lower taxes. Even if you are approved for SSDI, you'll likely still struggle unless you have other resources. Or, if rents are high in your area, you might consider renting it out and finding a small rental for yourself. --You might want to stay with or near more reliable family...

Rereading your post, how exactly are either of them sacrificing when you say they do very little every day? Are they using your health as an excuse for an extended vacation? While it might make sense for her to be home with you, why isn't he working???

This one thing worried me a bit, "I let my son off the hook because his job was so close to his dad's."

Is it fair to have those type of expectations for your independent, grown child?

That makes sense!

And I realize there are people that DO expect their children to take care of them. (The book/movie Like Water for Chocolate" is an excellent example of this.)

Have you checked into community based services for the disabled? It looks like in IL the program is run out of the Health and Family Services Dept. Being on Medicaid and your level of impairment should qualify you. In Texas the workers for the agency assess the level of disability and determine how much care is needed - which can vary from one day a week assistance to full time. This program keeps a lot of people in their homes and independent.

Sending Healing Love,
Littlepaw

Since the RSD/CRPS is a new diagnosis for me & I am just starting to seek out assistance. Thank you so much!! :hug: