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 04-11-2013, 06:23 PM #1
Allanira Allanira is offline
Member
 
Join Date: Feb 2013
Location: NM
Posts: 318
10 yr Member
Allanira Allanira is offline
Member
 
Join Date: Feb 2013
Location: NM
Posts: 318
10 yr Member
Teeth Finally a Diagnosis!

I have finally been diagnosed with CRPS after almost 10 years of pain. I just got the diagnosis today. So to all the DRs over the years that have said its all in my head and I just want pain meds because Im a junky I am vindicated. Now its a matter of finding the right treatment for me. I have had 1 sympathetic block that only worked for a couple days and my PM wants to do another one.
Allanira is offline   Reply With QuoteReply With Quote

advertisement
Old 04-11-2013, 06:34 PM #2
birchlake birchlake is offline
Member
 
Join Date: Jan 2010
Posts: 363
10 yr Member
birchlake birchlake is offline
Member
 
Join Date: Jan 2010
Posts: 363
10 yr Member
Default

It's like a double edge sword. But you truly can't address a health issue properly until you get a diagnosis. I remember having mixed feelings when I got my diagnosis. But the anger turned to resolve. And things CAN get better.

This is a great website to learn about CRPS, to vent when you have a bad day, and to get support.

Curious, who gave you your diagnosis and how did they come to that conclusion?

Good luck to you Allanira!

Last edited by birchlake; 04-11-2013 at 07:21 PM.
birchlake is offline   Reply With QuoteReply With Quote
Old 04-12-2013, 11:40 AM #3
Jimking Jimking is offline
Member
 
Join Date: Mar 2009
Posts: 879
15 yr Member
Jimking Jimking is offline
Member
 
Join Date: Mar 2009
Posts: 879
15 yr Member
Default

10 years is ridiculous, after all, this condition has been known for 150 years. Sometimes I get the feeling many doctors know what it is or have a hunch but blow many patients off because they do not want to deal with it. Without a diagnoses its easier for a doctor to make a claim that a patient is faking, somewhat, but many with a diagnoses have also been accused of drug seeking and "its all in your head" mumbo jumbo. As I've stated in other threads "Who the heck ever fakes this disease?" let alone most layman never ever heard of it. And if a fake did know about it, it would be one condition a faker would not even attempt!!
Jimking is offline   Reply With QuoteReply With Quote
Old 04-12-2013, 04:45 PM #4
KathyUK KathyUK is offline
Member
 
Join Date: Feb 2013
Posts: 151
10 yr Member
KathyUK KathyUK is offline
Member
 
Join Date: Feb 2013
Posts: 151
10 yr Member
Default

I think sometimes the longer you wait for a diagnosis, the more likely it is you've accepted the potential future duration of your pain, and therefore the more uplifting it can be. Don't get me wrong, noone wants this diagnosis, but having any diagnosis is a result after waiting so long with people disbelieving you. Having a name for it doesn't make the pain worse, at least you get to know what it is and what you can or can't do about it. My congratulations (and commiserations) to you. I had the same result at the end of March after 4 years of high level pain and 14 since it all started. I don't like having CRPS, but I did want to dance and say "Stick that in your pipe and smoke it" to the doctors who had treated me like a drugseeker.
KathyUK is offline   Reply With QuoteReply With Quote
Old 04-12-2013, 06:29 PM #5
lil-bug lil-bug is offline
Junior Member
 
Join Date: Apr 2013
Posts: 7
10 yr Member
lil-bug lil-bug is offline
Junior Member
 
Join Date: Apr 2013
Posts: 7
10 yr Member
Default

I also just finally got diagnosed and posted a thread double edge sword. I am also bothered to read that many can go into remission if it is treated early. Since I had docs thinking I was faking seizures and my pain now for almost 3 years, it is now going to be harder to treat. I had a seizure once in the bath and was drowning and my daughter saved my life and they still thought I was faking. Then they said it was conversion disorder and in my mind I felt they were still trying to tell me it was all in my head. I ended up with a really good psychiatrist who squashed all those theories. I really like my new primary care physician but even she has never heard of this disease and had to be taught. I hope she has also done her own research. I haven't seen her yet since I just got diagnosed but I plan on seeing her next week. I really do understand all of the emotions that comes with finally being diagnosed!!!!
lil-bug is offline   Reply With QuoteReply With Quote
Old 04-14-2013, 08:25 AM #6
Allanira Allanira is offline
Member
 
Join Date: Feb 2013
Location: NM
Posts: 318
10 yr Member
Allanira Allanira is offline
Member
 
Join Date: Feb 2013
Location: NM
Posts: 318
10 yr Member
Default

I have mainly had all military DRs except here and there when they sent me off base to a civilian DR. The PCM that I have right now is about to get stationed in Germany. It sucks. The first DR I get that actually listened to me and treated me like a real person is leaving. I don't know who my next PCM is going to be and if the next one will LISTEN to me. My PM won't prescribe any meds. He does shots only. If someone had listened to me when I had been in the Military and had just gotten back from Iraq then I could have gone into remission and not been hurting so much all these years. But hey I'm just a junky that wants a fix. Atleast that's what they were saying. Now they can't. Also has anyone ever put in for disability for this condition in the USA?
Allanira is offline   Reply With QuoteReply With Quote
Old 04-14-2013, 10:03 AM #7
birchlake birchlake is offline
Member
 
Join Date: Jan 2010
Posts: 363
10 yr Member
birchlake birchlake is offline
Member
 
Join Date: Jan 2010
Posts: 363
10 yr Member
Default

Quote:
Originally Posted by Allanira View Post
Also has anyone ever put in for disability for this condition in the USA?
There are a number of people with CRPS who have successfully navigated through the maze and been awarded Social Security Disability.

In fact, there is a forum that is dedicated to discussion of this. Here's a link...

http://neurotalk.psychcentral.com/forum28.html
birchlake is offline   Reply With QuoteReply With Quote
Old 04-15-2013, 10:23 AM #8
Jimking Jimking is offline
Member
 
Join Date: Mar 2009
Posts: 879
15 yr Member
Jimking Jimking is offline
Member
 
Join Date: Mar 2009
Posts: 879
15 yr Member
Default

Quote:
Originally Posted by Allanira View Post
I have mainly had all military DRs except here and there when they sent me off base to a civilian DR. The PCM that I have right now is about to get stationed in Germany. It sucks. The first DR I get that actually listened to me and treated me like a real person is leaving. I don't know who my next PCM is going to be and if the next one will LISTEN to me. My PM won't prescribe any meds. He does shots only. If someone had listened to me when I had been in the Military and had just gotten back from Iraq then I could have gone into remission and not been hurting so much all these years. But hey I'm just a junky that wants a fix. Atleast that's what they were saying. Now they can't. Also has anyone ever put in for disability for this condition in the USA?
It took my wife 4 years to get a firm diagnoses although some whispered RSD and dismissed her, and this is in the DC metro area, where doctors abound, or one would think so. The dilemma is that for most, it seems, it takes a few years to get that diagnoses, missing a window of opportunity. To me however, an early diagnoses is not always a guarantee of remission. Age plays a major factor, the younger the better for a remission. Most get this condition in their 30s+ years.
Jimking is offline   Reply With QuoteReply With Quote
Old 04-15-2013, 02:52 PM #9
needhelp13 needhelp13 is offline
Junior Member
 
Join Date: Feb 2013
Posts: 14
10 yr Member
needhelp13 needhelp13 is offline
Junior Member
 
Join Date: Feb 2013
Posts: 14
10 yr Member
Default

You have no idea how much I get it. I have had to deal with military Dr.s Keep copies of your records. Please pm if you have any questions. Just because one Dr treats you does not mean another one will. Also overseas assognments will be a no-no. I mean you may not be qualified due to medical now.
needhelp13 is offline   Reply With QuoteReply With Quote
Old 04-15-2013, 10:09 PM #10
S's Aunt S's Aunt is offline
Junior Member
 
Join Date: Apr 2013
Posts: 9
10 yr Member
S's Aunt S's Aunt is offline
Junior Member
 
Join Date: Apr 2013
Posts: 9
10 yr Member
Default therapy in military hospitals

Quote:
Originally Posted by Allanira View Post
I have mainly had all military DRs except here and there when they sent me off base to a civilian DR. The PCM that I have right now is about to get stationed in Germany. It sucks. The first DR I get that actually listened to me and treated me like a real person is leaving. I don't know who my next PCM is going to be and if the next one will LISTEN to me. My PM won't prescribe any meds. He does shots only. If someone had listened to me when I had been in the Military and had just gotten back from Iraq then I could have gone into remission and not been hurting so much all these years. But hey I'm just a junky that wants a fix. Atleast that's what they were saying. Now they can't. Also has anyone ever put in for disability for this condition in the USA?
Many military hospitals have a therapy they use for Phantom Limb Pain which has had good results for many people with crps. It is called Calmare or Scrambler Therapy. You might check to see if you have access to that. The hospitals are:
Andrews Air Force Base, MD 20762-6421,
San Antonio Military Medical Center
(formerly Brooke Army)
Fort Sam Houston, TX 78234,
Boston VA Healthcare Jamaica Plains
Boston, MA 02130
Hunter Holmes McGuire VA Medical Center
Richmond, VA 23249,
Naval Medical Center Portsmouth
Portsmouth, VA 23708-2111
Naval Medical Center San Diego
San Diego, CA 92134-5000
Naval Medical Center Bethesda
Bethesda, MD 20889
Naval Hospital Camp Lejeune
Camp Lejeune, NC 28547-0100
Naval Hospital Pensacola
Pensacola, FL 32512-0001
Naval Hospital Bremerton
Bremerton, WA 98312-1898
Naval Hospital Jacksonville
Jacksonville, FL 32214-5000
Naval Hospital Camp Pendleton
Camp Pendleton, CA 92055-5008
U.S. Naval Hospital Okinawa
Chatan-cho, Okinawa 904-0103

good luck!
S's Aunt 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
Could I finally have a diagnosis please? Allanira Reflex Sympathetic Dystrophy (RSD and CRPS) 8 03-09-2013 04:14 AM
Finally, a diagnosis Gyrene Peripheral Neuropathy 11 07-31-2009 06:14 PM
Maybe a diagnosis finally labar914 Parkinson's Disease 1 01-26-2008 12:37 AM
I Finally Got My Diagnosis Dena Thoracic Outlet Syndrome 12 12-30-2007 10:50 PM
A Diagnosis, Finally! Ellie Women's Health 5 07-30-2007 04:10 PM


All times are GMT -5. The time now is 03:57 AM.

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.