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Old 08-05-2008, 01:37 PM
 
7,765 posts, read 8,101,821 times
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My wife was diagnosed 5 years ago with a rare condition called RSD (Reflex Sympathetic Dystrophy) also called CRPS (Complex Regional Pain Syndrome)
RSDSA :: What is CRPS?
I was wondering if others have had experience with this condition with loved ones or themselves. I could create a different thread a mile long how difficult it's been having good insurance to finally find a doctor to treat this condition, it's been shear hell from doctors, insurance companies and employers. We've finally found a caring doctor, who I think, has gone the extra mile. 7 months ago my wife was losing her mind because of the severe pain with no meds in 4.5 years and in 7 months she's so much better. She is now totally disabled however. Her doctor sent her to a specialist at GWU Hospital who'll perform a 4 day experimental Ketamine infusion therapy in the ICU. Ketamine is an animal tranquilizer that has the ability to calm, numb, reboot a human's nervous system. I've read many success stories of remissions from RSD using Ketamine. I also know that Ketamine is a class 3 drug, it has the street name of special K. My wife developed this disease from a fractured wrist. Anyone have a RSD stories to tell, any advice?
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Old 08-05-2008, 03:58 PM
 
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Sorry to hear your wife is suffering from CRPS. In my experience, this is not such a rare condition. Having seen my share of this, I have no doubt that it is a very real entity, unfortunately there are many providers who are either unaware or ill informed about the condition.

Sounds like your wife is in good hands now, best of luck to her.
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Old 08-05-2008, 04:10 PM
 
7,765 posts, read 8,101,821 times
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Quote:
Originally Posted by bluedevilz View Post
Sorry to hear your wife is suffering from CRPS. In my experience, this is not such a rare condition. Having seen my share of this, I have no doubt that it is a very real entity, unfortunately there are many providers who are either unaware or ill informed about the condition.

Sounds like your wife is in good hands now, best of luck to her.
I'm with you, I don't think it is as rare as some believe, I think the number is as high as 2 million tops, however, it astonishes me how many doctors who claim to treat it have no idea how the disease works. Some even say that it is in the patient's head or the disease doesn't spread. And the big kicker is the lack of compassion or to even feel one's pain when prescribing medication. My wife was taking 1 vicodin (weakest version) per-day for years. This is a disease that can and is more painful than many cancers!
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Old 08-06-2008, 04:14 AM
 
Location: Florida
22,906 posts, read 24,299,190 times
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My daughter has RSD and there is nothing encouraging I can add to this thread.
But I do hope you will come back and give an update after the Ketamine infusion therapy .
In the meantime, thanks for mentioning it and I'm off to Google and read
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Old 08-07-2008, 08:40 AM
 
7,765 posts, read 8,101,821 times
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Quote:
Originally Posted by old_cold View Post
My daughter has RSD and there is nothing encouraging I can add to this thread.
But I do hope you will come back and give an update after the Ketamine infusion therapy .
In the meantime, thanks for mentioning it and I'm off to Google and read
I'll keep you posted. Have you read any ketamine articles related to the treatment of RSD yet, if so, what do you think?
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Old 08-16-2008, 10:21 PM
 
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I can also relate to your wife. I developed RSD renamed Complex Regional Pain Syndrome, from an ankle fracture. The best doctor for RSD is Dr. Gabor Racz at the International Pain Instiute in Lubbock,Texas.

He is world renouned for the this nerve disorder. He educates other doctors about the disesase and procedures. People from all over the world come to Dr. Racz for treatment. He performed one of my procedures. During the procedures, doctors from Germany and all over the world observed him perform the procedure.

I would strongly recommended that your wife seek his advice before undergoing such an abrasive treatment. The facility also has a physical therapist next door to the clinic and she specifically works with the RSD patients of the pain clinic. She is caring and kind. Essentially, she understands Complex Regional Pain Syndrome.

There is also another doctor at the facility, Dr. Miles Day. He is also educated in RSD. He is extremely caring.
Essentially, he is ranked on of the top ten doctors for RSD.
Remeber, Dr. Racz is world renouned. RSD is his specialty. It is very important that we educate others about RSD.

Living with RSD, is a job within itself. I understand because I live with it everyday. People with RSD must become devoted to helpling one another.

Last edited by striving1; 08-16-2008 at 10:29 PM.. Reason: I didn't fininsh my reply
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Old 08-18-2008, 11:37 AM
 
Location: NJ
21,335 posts, read 29,036,668 times
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Any info that anyone can post would be helpful.Medications would interest me as well as a doctor in the NJ/Philadelphia area. For the last 2 years I've wondered if this could be my problem as well. I know a few people online that have it.

I injured my back in 2000 and over the years have gotten worst, surgeries do not help. I pulled something in my back lifting a case of soda, it was around L5S1 & the sacrum area. Felt like a rubber band snapped. The next time I injured myself I almost fell and instead of falling, twisted my bady, pulled something again.

Eventually I had an MRI (was not treated properly when injured) that showed a herniated disk, but it shouldn't have given me the pain I was in. Over the years I've done a lot of googling (not obsessively) and figured that I had nerve damage as well as ligament & muscle damage.

My lower back feels like it is on fire. In addition to feeling like it, it's black & blue & discolored. Doctors thought it was from injections & the heating pad but I really didn't spend that much time on the heating pad. I haven't used one since March or April, the area is still discolored. My back is also very hot & seems to sweat a lot.

For the last week I've had no life. I do what needs to be done in the house and that's about it, nothing extra. Today after doing 2 loads of laundry and cleaning one bathroom I've been on the couch since 10:30. Going to try the jacuzzi next to see if that gives me some relief with the muscle spasms.

I need to do something. I can't continue to live like this.

Quote:
Originally Posted by jmking View Post
My wife was diagnosed 5 years ago with a rare condition called RSD (Reflex Sympathetic Dystrophy) also called CRPS (Complex Regional Pain Syndrome)
RSDSA :: What is CRPS?
I was wondering if others have had experience with this condition with loved ones or themselves. I could create a different thread a mile long how difficult it's been having good insurance to finally find a doctor to treat this condition, it's been shear hell from doctors, insurance companies and employers. We've finally found a caring doctor, who I think, has gone the extra mile. 7 months ago my wife was losing her mind because of the severe pain with no meds in 4.5 years and in 7 months she's so much better. She is now totally disabled however. Her doctor sent her to a specialist at GWU Hospital who'll perform a 4 day experimental Ketamine infusion therapy in the ICU. Ketamine is an animal tranquilizer that has the ability to calm, numb, reboot a human's nervous system. I've read many success stories of remissions from RSD using Ketamine. I also know that Ketamine is a class 3 drug, it has the street name of special K. My wife developed this disease from a fractured wrist. Anyone have a RSD stories to tell, any advice?
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Old 08-22-2008, 08:00 AM
 
7,765 posts, read 8,101,821 times
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Striving, thanks for responding! Funny that I've not come across their names with all the surfing I've done these past few years. My wife has refused invasive treatments such as surgical cutting, dental work for fear of the disease spreading to those areas. She has multiple limb (mirrored) RSD. I've called my wife with the names of the doctors you've mentioned so she can research them. Can you give me an idea of the treatment they offered you? Thanks again!
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Old 08-22-2008, 08:14 AM
 
7,765 posts, read 8,101,821 times
Reputation: 4669
Quote:
Originally Posted by Roselvr View Post
Any info that anyone can post would be helpful.Medications would interest me as well as a doctor in the NJ/Philadelphia area. For the last 2 years I've wondered if this could be my problem as well. I know a few people online that have it.

I injured my back in 2000 and over the years have gotten worst, surgeries do not help. I pulled something in my back lifting a case of soda, it was around L5S1 & the sacrum area. Felt like a rubber band snapped. The next time I injured myself I almost fell and instead of falling, twisted my bady, pulled something again.

Eventually I had an MRI (was not treated properly when injured) that showed a herniated disk, but it shouldn't have given me the pain I was in. Over the years I've done a lot of googling (not obsessively) and figured that I had nerve damage as well as ligament & muscle damage.

My lower back feels like it is on fire. In addition to feeling like it, it's black & blue & discolored. Doctors thought it was from injections & the heating pad but I really didn't spend that much time on the heating pad. I haven't used one since March or April, the area is still discolored. My back is also very hot & seems to sweat a lot.

For the last week I've had no life. I do what needs to be done in the house and that's about it, nothing extra. Today after doing 2 loads of laundry and cleaning one bathroom I've been on the couch since 10:30. Going to try the jacuzzi next to see if that gives me some relief with the muscle spasms.

I need to do something. I can't continue to live like this.
Roselvr, I would find a doctor that treats RSD and get their opinion. However, many doctors claim to treat it, but, do not have a clue. This has been my experience. If you live near a teaching hospital such as Johns Hopkins, as an example, I'd start that premise or leave your area for the very best RSD docs such as stated by Striving "above post" or visit or call these folks: <Institute_Announcement>. Who are also world renown.
As far as meds are concerned, my wife received very little care in controlling her pain for years causing this thing to spread. It is controlled now by strong narcotics. However, we are vigorously striving to relieve the pain in other ways now that the pain is somewhat controlled so she can at least move about. Good luck!!
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Old 10-02-2008, 09:25 AM
 
7,765 posts, read 8,101,821 times
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Just an update if anyone's interested. My wife had the 4 day infusion and it didn't work. This result could have been the 4 year neglect she received from her HMO. It's a treatment that works the best early on not years later. Next week the hospital is going to try a one day infusion using Lidocaine. The problem with this procedure is that if it works it really is temporary because the lidocaine doesn't stay in your system long but it could lead to a combination of treatments down the road.
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