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 10-10-2007, 10:50 AM #1
carriecatlover carriecatlover is offline
Junior Member
 
Join Date: Oct 2007
Location: South Jersey
Posts: 15
15 yr Member
carriecatlover carriecatlover is offline
Junior Member
 
Join Date: Oct 2007
Location: South Jersey
Posts: 15
15 yr Member
Exclamation has anyone heard of RND? reflex Neurovascular dystrophy - kid version of RSD

They call it Amplified Musculoskeletal Pain or Reflex Neurovascular Dystrophy (RND)

The link below is a guide for parents of children with RND by Dr. David Sherry, MD


http://www.google.com/search?sourcei...ular+dystrophy


Check it out, it is a PDF so I couldn't cut a past it here. It is RSD; I don't know why they are calling it something else. My 2 docs, Dr. S being one of them tell me that his program at CHOP - Children’s Hospital of Philly is somewhat successfully. The children need to maintain a very aggressive/active lifestyle like a professional athlete after the treatment and work out and exercise every day or else the pain will come back. It also has allot to do with psychological stress. That some of the children may develope RND without illness or injury. I don't recall having an injury and I still believe that my full body RSD whas brought on by stress.

check it out, I'm curious to see what everyone's comments are.

Carrie
carriecatlover is offline   Reply With QuoteReply With Quote

advertisement
Old 10-10-2007, 11:29 AM #2
betsyherm's Avatar
betsyherm betsyherm is offline
Junior Member
 
Join Date: Apr 2007
Location: High Point, NC
Posts: 70
15 yr Member
betsyherm betsyherm is offline
Junior Member
betsyherm's Avatar
 
Join Date: Apr 2007
Location: High Point, NC
Posts: 70
15 yr Member
Default

I'm sort of using something I once posted on another board about this subject. I have very definite opinions on this, but please remember that they are just that: opinions. Also please remember that any...anger in this post comes from being treated very badly for many years as a child with RSD.


RSD and RND are essentially the same thing. One is not a pediatric form of another, they are just two different names for one disease (and there are a lot of other names too). RND is a term commonly used by a certain set of pediatric doctors who believe in a certain set of practices to treat whatever you want to call this stupid disease.

These doctors treat whatever-they-call-it with intensive physical therapy, and sometimes the very basic combination of Neurontin and Elavil. And they often get very good results with this treatment. Because although their theories are, in my opinion, ridiculous, the treatment is very basic, conservative and works in a great deal of pediatric patients.

Why is this a pediatric thing? Where did these theories come from? It comes from the fact that children often recover more readily from RSD, without invasive procedures. However, that doesn't make it a different disease. It's to be expected. Neuroplasticity (the ability of the nervous system to rerout and "fix" itself) lasts well into the 20s. Adults don't have as much of that advantage, and more steps must often be taken to retrain the nervous system.

My problem with all of this? I don't want to name names of doctors who have definitely helped some people, but some of them have published articles and whatnot solely blaming psychological factors for the development of RSD (or RND).


As somebody who developed RSD at the age of 12, I have a very emotional response to theories like this one. 13 years later, I still find that when confronted with certain types of opinions, I get very frustrated and angry. I'm sorry if my hostility has injected itself into this explanation.

All of this, in my opinion, doesn't make RND an illegitimate term for this disease. Really, I think it's a better name than CRPS. RND, standing for reflex neurovascular dystrophy, at least takes into account that there are vascular problems seen in RSD or RND, without assuming dysfunction of the sympathetic nervous system to be the direct cause.

-Betsy
betsyherm is offline   Reply With QuoteReply With Quote
Old 10-10-2007, 01:00 PM #3
tayla4me tayla4me is offline
Member
 
Join Date: Feb 2007
Posts: 486
15 yr Member
tayla4me tayla4me is offline
Member
 
Join Date: Feb 2007
Posts: 486
15 yr Member
Default

Dear Betsy,

I thnk because what you have gone through and what people have gone through due to the confusion of the RSD diagnosis that it is far better that we call it by the name it is now known as, CRPS. This does truly does give some hint that this IS a COMPLEX disease, which at this stage can not be blamed on any one system failure.
I believe if we could only establish why it happens in some and not others then we would be at least half way to finding a cure.
I know for some people they are not happy that it is called a "pain syndrome" as they feel it doesn't recognise all the other horrible problems associated with having it but as my doctor says "it is pain that usually brings patients to him, and it is his job to try and prevent it going any further"
love Tayla
tayla4me is offline   Reply With QuoteReply With Quote
Old 10-10-2007, 01:54 PM #4
RSD_Angel's Avatar
RSD_Angel RSD_Angel is offline
Member
 
Join Date: Oct 2006
Location: Greene, NY
Posts: 153
15 yr Member
RSD_Angel RSD_Angel is offline
Member
RSD_Angel's Avatar
 
Join Date: Oct 2006
Location: Greene, NY
Posts: 153
15 yr Member
Default

Betsy,

I am copying and pasting what you said ,Neuroplasticity (the ability of the nervous system to rerout and "fix" itself) lasts well into the 20s.

I am one of those people that have neuroplasticity!! and I got RSD when i was 24 and got the scs at 24 and the PNS at 25 and with both of them my nervous system rerouted around the stim's making them not work at all!! I even had 3 revisions on the scs and finnaly my doc said they cant get it to stick bc my body keeps rerouting itself around them. They hoped that once they did the 1st or 2nd revision that my body would not do it, but my doc said iam in the 1-2 % of the poplulation that bodies does this!! lucky me..!!

I just posted bc i havent found anytihng aobut it in the articles and jsut surprized me when i read yours and it was like YUPP!! and its just not me!!


Amber
RSD_Angel is offline   Reply With QuoteReply With Quote
Old 10-10-2007, 02:26 PM #5
betsyherm's Avatar
betsyherm betsyherm is offline
Junior Member
 
Join Date: Apr 2007
Location: High Point, NC
Posts: 70
15 yr Member
betsyherm betsyherm is offline
Junior Member
betsyherm's Avatar
 
Join Date: Apr 2007
Location: High Point, NC
Posts: 70
15 yr Member
Default

Tayla,

I'm one of those people who resents RSD being called a pain syndrome. It's so much more than that! In my mind, saying it's a pain syndrome trivializes and calls into question all of the other major problems I've had, and that I know others have too. Sure, it's complex and sometimes regional, but it's NOT just a pain syndrome. Someday, the new name will be just as outdated as all of the others, I'm sure, and it won't be an issue. For now, I'm sticking with calling it RSD. Sometimes I think I should tell everyone I meet a different name and see how long it takes them to get confused.


Amber,

I'm sorry to hear of your problems. I recently read an article that suggests that neuroplasticity is not only limited to childhood and young adulthood, but I think it's pretty well known that the younger one is, the easier it is for the body and nervous system to compensate and repair itself when something goes wrong. It explains why for many kids with RSD, all that is necessary is physical therapy. Unfortunately, it's still incredibly painful...and even if it works, it's a question of whether the ends justify the means.

-Betsy
betsyherm is offline   Reply With QuoteReply With Quote
Old 10-10-2007, 02:58 PM #6
ali12's Avatar
ali12 ali12 is offline
Magnate
 
Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
15 yr Member
ali12 ali12 is offline
Magnate
ali12's Avatar
 
Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
15 yr Member
Default Re: RND

Hi there,
I am a twelve year old girl who suffers from RSD in my right arm and left leg (my leg is much worst than arm)
I have not heard aboutRND but from what I understand, it is another word for RSD, it certainly sounds like RSD in my opinion.
I found the PDF very useful, and I am sure many more people will.
Many thanks for posting this message it was really interesting
Pain free hugs
Alison
-x-
__________________
To the World you may be one person, but to one person, you may be the World.
ali12 is offline   Reply With QuoteReply With Quote
Old 10-10-2007, 05:07 PM #7
carriecatlover carriecatlover is offline
Junior Member
 
Join Date: Oct 2007
Location: South Jersey
Posts: 15
15 yr Member
carriecatlover carriecatlover is offline
Junior Member
 
Join Date: Oct 2007
Location: South Jersey
Posts: 15
15 yr Member
Confused I'm still a newbie

I'm still new to this despite having full body and being put on Dr. S's list to have the Ketamine Coma in Germany.
I've only had RSD for a little over 2 months. My 1st symptom was on 7/20/07and it's been spreading like a wild fire since then.

I don't know what some of the abbreviations are that you guys are referring to

Can someone tell me what the mean?
PNS
SCS
and any other I may come across

Thank you in advance for you help. This site has really helped me learn allot.

Carrie
carriecatlover is offline   Reply With QuoteReply With Quote
Old 10-10-2007, 05:32 PM #8
betsyherm's Avatar
betsyherm betsyherm is offline
Junior Member
 
Join Date: Apr 2007
Location: High Point, NC
Posts: 70
15 yr Member
betsyherm betsyherm is offline
Junior Member
betsyherm's Avatar
 
Join Date: Apr 2007
Location: High Point, NC
Posts: 70
15 yr Member
Default

Carrie,

The PNS and SCS are both implantable devices for pain control. The PNS is a peripheral nerve stimulator and the SCS is a spinal cord stimulator. Lots of people with RSD go through the SCS trial and/or implantation, and you'll find it mentioned quite a lot.

There are lots and lots of abbreviations when it comes to stuff for RSD. It kind of takes some getting used to. Just keep asking questions!

-Betsy
betsyherm is offline   Reply With QuoteReply With Quote
Old 10-10-2007, 06:13 PM #9
frogga's Avatar
frogga frogga is offline
Member
 
Join Date: Nov 2006
Location: UK
Posts: 830
15 yr Member
frogga frogga is offline
Member
frogga's Avatar
 
Join Date: Nov 2006
Location: UK
Posts: 830
15 yr Member
Default

I hate the way that some of the researcher suggests that RSD (CRPS) is easily treated by physio. If you aren't cured by physio then you are insane.

I go to a university which is very well known for it's pain psychology. It runs the UKs only pain management program for children and teens (Bath PMP). I was in the library earlier searching for a book on cognitive neuroscience when I decided to look at what they had in the pain area. Reading through some of the books made me SO ANGRY - there were lots of studies on the psychological problems of RSD'ers (in one study 80% reported previous abuse/ child abuse/ sexual abuse as a "determined" cause of RSD - as diagnosed by Drs). Also there were many more suggesting it was a conversion disorder, a form of Munchaussen, malingering etc. I personally feel that the same is with RND - if you get better then your body was making it up, if you get worse then you are insane. Grrrr

I prefer the term RSD because I feel that CRPS belittles what I live with. I have before told people I have Complex Regional Pain Syndrome and they then turn round and go "ok. So why can't you move? - it's only pain".

Carrie have you tried ketamine before on an outpatiet/ oral basis? I have been on it for the last 2 years or so. I have severe full body RSD and am a quad.

Love

Frogga xxxxxxx
frogga is offline   Reply With QuoteReply With Quote
Old 10-10-2007, 07:02 PM #10
betsyherm's Avatar
betsyherm betsyherm is offline
Junior Member
 
Join Date: Apr 2007
Location: High Point, NC
Posts: 70
15 yr Member
betsyherm betsyherm is offline
Junior Member
betsyherm's Avatar
 
Join Date: Apr 2007
Location: High Point, NC
Posts: 70
15 yr Member
Default

Frogga said:
Quote:
I prefer the term RSD because I feel that CRPS belittles what I live with. I have before told people I have Complex Regional Pain Syndrome and they then turn round and go "ok. So why can't you move? - it's only pain".
That's pretty much what I was trying to say above. Although I've never had it nearly as bad as Froggsy, I've had a lot of problems with dystonia and movement disorder, skin problems and recurrent infections from poor circulation and stuff like that. Those are often part of the package deal that is RSD, and they don't come with something that is "just really painful" as the term CRPS implies.

-Betsy
betsyherm is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

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
Footprints.... a new version Abbie Sanctuary for Spiritual Support 14 06-18-2010 04:50 PM
? gag reflex - taking capsules Lara Medications & Treatments 5 03-18-2007 06:32 PM
What is reflex sympathetic dystorphy? ZombieSlayer Reflex Sympathetic Dystrophy (RSD and CRPS) 6 09-26-2006 04:55 AM


All times are GMT -5. The time now is 11:57 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.