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)


advertisement
Reply
 
Thread Tools Display Modes
Old 02-06-2015, 11:45 AM #1
Always_Believe Always_Believe is offline
Member
 
Join Date: Jan 2015
Location: IL
Posts: 279
8 yr Member
Always_Believe Always_Believe is offline
Member
 
Join Date: Jan 2015
Location: IL
Posts: 279
8 yr Member
Default It's a start...

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??
Always_Believe is offline   Reply With QuoteReply With Quote

advertisement
Old 02-06-2015, 01:16 PM #2
LIT LOVE LIT LOVE is offline
Magnate
 
Join Date: Mar 2010
Posts: 2,304
10 yr Member
LIT LOVE LIT LOVE is offline
Magnate
 
Join Date: Mar 2010
Posts: 2,304
10 yr Member
Default

Quote:
Originally Posted by Always_Believe View Post
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??
CRPS is the same syndrome as RSD. I saw your post on SSDfacts and then saw this post...
LIT LOVE is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Always_Believe (02-06-2015)
Old 02-06-2015, 01:30 PM #3
Always_Believe Always_Believe is offline
Member
 
Join Date: Jan 2015
Location: IL
Posts: 279
8 yr Member
Always_Believe Always_Believe is offline
Member
 
Join Date: Jan 2015
Location: IL
Posts: 279
8 yr Member
Default

Quote:
Originally Posted by LIT LOVE View Post
CRPS is the same syndrome as RSD. I saw your post on SSDfacts and then saw this post...
I gathered that they are in the "same family" so to speak with the difference mainly between a diagnosed nerve injury and duration/progression of the disease process. Am I misunderstanding the two (RSD & CRPS)???
Hoping this diagnosis as well as increased documentation of functional ability helps my SSDI reconsideration. Time will tell...
Always_Believe is offline   Reply With QuoteReply With Quote
Old 02-06-2015, 02:11 PM #4
catra121's Avatar
catra121 catra121 is offline
Senior Member
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
catra121 catra121 is offline
Senior Member
catra121's Avatar
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
Default

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.
catra121 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Always_Believe (02-06-2015), Enna70 (02-06-2015)
Old 02-06-2015, 02:15 PM #5
catra121's Avatar
catra121 catra121 is offline
Senior Member
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
catra121 catra121 is offline
Senior Member
catra121's Avatar
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
Default

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.
catra121 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Enna70 (02-06-2015)
Old 02-06-2015, 03:02 PM #6
Always_Believe Always_Believe is offline
Member
 
Join Date: Jan 2015
Location: IL
Posts: 279
8 yr Member
Always_Believe Always_Believe is offline
Member
 
Join Date: Jan 2015
Location: IL
Posts: 279
8 yr Member
Default

Quote:
Originally Posted by catra121 View 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.

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....
Always_Believe is offline   Reply With QuoteReply With Quote
Old 02-06-2015, 03:03 PM #7
LIT LOVE LIT LOVE is offline
Magnate
 
Join Date: Mar 2010
Posts: 2,304
10 yr Member
LIT LOVE LIT LOVE is offline
Magnate
 
Join Date: Mar 2010
Posts: 2,304
10 yr Member
Default

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.

Last edited by LIT LOVE; 02-06-2015 at 03:38 PM.
LIT LOVE is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Always_Believe (02-06-2015)
Old 02-06-2015, 07:10 PM #8
Littlepaw's Avatar
Littlepaw Littlepaw is offline
Senior Member
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Littlepaw Littlepaw is offline
Senior Member
Littlepaw's Avatar
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Default

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,
Littlepaw
Littlepaw is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Always_Believe (02-06-2015)
Old 02-06-2015, 09:08 PM #9
Always_Believe Always_Believe is offline
Member
 
Join Date: Jan 2015
Location: IL
Posts: 279
8 yr Member
Always_Believe Always_Believe is offline
Member
 
Join Date: Jan 2015
Location: IL
Posts: 279
8 yr Member
Default

Quote:
Originally Posted by LIT LOVE View Post
Having a CRPS I or II diagnosis will not make any difference to an ALJ compared to an RSD diagnosis.
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


Quote:
Originally Posted by LIT LOVE View Post
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.
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!!!
Always_Believe is offline   Reply With QuoteReply With Quote
Old 02-06-2015, 09:11 PM #10
Always_Believe Always_Believe is offline
Member
 
Join Date: Jan 2015
Location: IL
Posts: 279
8 yr Member
Always_Believe Always_Believe is offline
Member
 
Join Date: Jan 2015
Location: IL
Posts: 279
8 yr Member
Default

Quote:
Originally Posted by Littlepaw View Post
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,
Littlepaw
Thank you! Anything is worth a try at this point!!
Always_Believe is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Where do I start lakegirl Dentistry & Dental Issues 2 06-30-2013 04:46 PM
Where do I start lakegirl Trigeminal Neuralgia 4 06-08-2013 10:50 PM
I wonder if I can start # 242 ... Wren Survivors of Suicide 25 01-23-2011 03:32 PM
where do I start sr10 Traumatic Brain Injury and Post Concussion Syndrome 8 12-11-2010 05:57 AM
Start w/RSD, come down with more...? junk4myemail Reflex Sympathetic Dystrophy (RSD and CRPS) 0 05-28-2007 08:05 PM


All times are GMT -5. The time now is 05:49 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.