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.

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!

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!! :mad:

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. :grouphug:

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!!!!

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?

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

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.

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.

therapy in military hospitals
 

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!

I was 24 when it happened. I am almost 34 now. We live in Clovis, NM. The stinky armpit of NM. Lubbock, Tx is about an hour away. So I don't have access to a lot of the military hospitals or VA clinics that might be having good success dealing with this diagnosis. I am going to my PCM in the 18th and am going to ask him if he will fill out the form for a handicap placard over here. I already know that I am not going to get better. I am only going to get worse. My right knee is now starting to hurt. Now its a matter of trying to get DRs that listen and don't automaticly think I only want pain meds.

Wow what a small world it is:) I am at Kirtland. I have a great team at UNM. PM me if you need their info. Tri-care will send you here on medical tdy. I love my providers.

PM me and I can send you my phone info and go into more details. There is so much to tell.

They keep sending me to Lubbock or Portales here. I wish they would send me to a DR in Albuquerque. I have a brother and sister in law and their kids for my son to play with while I'm at the DR lol. When I go to the DR tomorrow I am going o ask him if he will see about getting me to another DR that knows more about CRPS than my PM does. He's still going on the old info that the sympathetic block will cure it.

I am PMing you all the info I have. The Drs names and such.I must say I LOVE my physical therapist, I have made more progress with her than I ever thought possible. She is incredible. I highly advise going to her.

[QUOTE=S's Aunt;975439]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.

Forgot to say that the doc that we saw for it with my niece mentioned successfully treating several people who have had crps for many, many years. My niece went from a pain level 8/10 to a zero. Look at the threads for Calmare Therapy for more info.

Good luck!

Hi Allanira,

I don't know how the military medical system works, or what branch you were in, but when I looked at the list of locations of military hospitals that had calmare machines, there was one Army Hospital in San Antonio Texas that had one. San Antonio Military Medical Center (formerly Brooke Army) at Fort Sam Houston, TX. If you had access to that, it could really be worth a try.

Good Luck!

Note to moderators: Not sure if I'm allowed to mention the Military Hospital by name, sorry! Thanks for fixing it if I'm not supposed to :-) I'm still learning about the posting thing...

They stuck us in Clovis, NM after being at Holloman which was close to William Beaumont Army Medical Center in El Paso. Its now a 4 hr trip to Alamogordo and Holloman and another hour from there to El Paso. The VA is attached to that medical center and they were not so helpful. Kept telling me that because I didn't have a surgery at their center then I didn't really have it even though I have an 8 inch scar plus all the medical records (which they were going to shred if I gave it to them) and the xrays from it. I would gladly go back to that medical center because I have family and friends still in Alamogordo that I could stay at. Plus I could go to my favorite reptile store in El Paso lol. Its just rotten that I am over here now instead of down there were I knew my way around. I don't know any of the hospitals or VA treatment facilities in Amarillo or Lubbock. I was going to an OS in Lubbock but he REALLY irritated me.

(Moderators don't know if I am allowed to put in the treatment facility but please tell me if Im not. I will gladly remove it.)