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 :)

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

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:hug:

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!!

:rolleyes:
Amber

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

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-

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:confused:

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

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 said: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

Thats exactly how I feel. I can handle pain - I can grit my teeth and get on with it I mean I have lived with RSD for 5 years. Pain isn't nice and it drives you nuts but I would probaly still be walking and still be independent and have use of my arms/ legs/ generalised body if it was *just* pain.

I know we have gone off topic Carrie - but out of interest after you were diagnosed did you start physio? or did you not. Did you find it helped you alot or did you go downhill from it?

Love Frogga xxxxx

Please see a thread I started on this a while back also:
http://neurotalk.psychcentral.com/sh...ad.php?t=10530

Hi Betsy,


It is a good thing that we have all our personal thoughts on what this disease is called but obviously my opinion is that I don't believe it trivialises our disease but in fact describes it perfectly. As I said this is just my opinion:)
The word Syndrome does indeed mean there is a group of symptoms that together represent a disease and the symptom that seems to be the common denominator with us all is pain.
Here in Australia it is never called RSD anymore so all doctors and ancilliary staff refer to it only as CRPS.
Everyone who knows and cares for me are very aware of what CRPS means and those who don't, I don't care about.

Whatever it is called I just wish it would just go away:rolleyes:
Take care
Tayla:hug:

Took the words right out of my mouth :winky:

frogga,
My PM doc tells IV won’t help much, that it would give me little relief. I said I want to try it anyway, I’m 9-12 months away from going to Germany. I’m developing dystonia in my left arm, getting color & temperature changes. He is just sitting back watching it happen.
I’m also battling the insurance companies. I’m going under my husband’s plan 11/1 which is better so I’m hoping that they will cover the IV Ketamine, I want to try anything I can get. In patient out patient, oral, anything. He wants me to have a cervical block for my left arm/side. Can someone tell me a little about that?

Frogga,
Physio? Do you mean physical Therapy? If so NO I did Yoga once a week before this all started and walked a few nights a week. I wasn’t in great shape but I was very flexible from being a gymnast when I was younger. Once my 1st symptom occurred I stopped all physical activity. It was painful enough to just walk up a set of stairs. My docs said to save physical Therapy for when I get back from Germany. Insurance Companies only allows a certain amount of visits per year/lifetime not to use them up now, save them for when I REALY need them.
Carrie

Carrie,

I never heard of insurance companies putting a limit on phy thereapy?? or even a life time limit... I have had 2 insurnace companies and had phy therapy with both of them and they said as long as I pay the copays and make a gain or still have the diagnosis that they would still pay with no limit. I am interested in yours having a limit and a lifetime limit!! god that would suck ! sorrry.

Have you tried getting into seeing Dr. S in philly instead of going to germany? and how long have you had RSD??

:hug:
Amber

Hi Carrie

Ok - so what have you tried? The way I understand it you have full body RSD for the last couple of months and you are now developing dystonia in your left arm? Is that right?

Ketamine - you can take this orally every day - which I do. Some people here swear by things like Grape Seed Extract and antioxidants such as DMSO. There are pain creams which can be used which are a mixture of ketamine/capascin and other stuff. Blocks - it would be worth a try as you sound like you are in the beginning stages of RSD and you are not going to lose anything by trying and they really help some people.

I am really baffled by what you say about physiotherapy - to not have had any at all? If you believe that your RSD is similar to the RND type then surely having physio is really really important (and yes I do know exactly how much it all hurts! but I have been unable to find a physio willing to treat me for the last 2 years or so because I'm too advanced/ in too much pain and alot of the deterioation I have had to deal with since I feel is related to that. The problem is that contractures can form fast in RSD areas and so physio is really important or SOME way of keeping the muscles moving/ normalised.

I know this may sound like a rant - but I have had huge problems with physio which alongside severe RSD has meant that I have developed contractures in most of my joints. You may never get them, many don't, it's just I know how hard to deal with they are and I don't want anyone that doesn't have to to go through that!

Love

Frogga

xxxxx

Amber,
I've worked in the medical administrative field for 12 yrs. almost all ins companies or at least the ones in my area NJ have a limit on physical therapy. my plan NJ Blue Cross/ Blue Sheild) is somthing like 40 visits per diagnosis.
I have seen Dr. S, he is the one that pu me on his Germany list. He controls the list. He said I need IV Ketamine too but we are fighting with my insurance company on getting it covered. I've only had RSD for 2 months.
Carrie

Frogga,
Is oral Ketamine covered by insurance RX plans? The only thing I have tried is regualr meds, anti inflamatories, anti seizure, muscle relaxers, pain med, anti depresants & supplements. Have done no physical therapy and do not plan on it. I tried to ride my exercise bike a once or twices but it just made my leg muscles too weak later in the day and I ended up on the couch with limp burning legs for the rest of the day.
What is DMSO that you mentioned in you mesage?

Carrie

pt
 

hmm i guess i am a little confused...i have had rsd/crps whatever the fad phrase this year is for almost 20 years and i think the only thing that has kept me from losing all function in my extremities is pt. there are patients who have advanced dystonia that has resulted in long term "locked" joints who are beyond the capabililities of the pt, but if you arent at that point yet i cant imagine why a doctor would say to avoid it. i am the first to say it is an uncomfortable process, but if you arent "locked" and you are trying to avoid that outcome you need joint manipulation. if you dont stimulate your muscles then atrophy is inevitable. as for the ins thing about a limit to visits, i had that issue with my old ins company and my doctor eliminated the issue by altering my dx as my symptoms changed (i.e. my initial complaint was an injury, then there was post surgery rehab, then dystonia in my r arm, r leg, then there was a dx that was post rabdomyalisis).
i am not trying to be a pita for those with this dx, especially those who have a fresh dx, my point is simply that at any point over the last close to 20 years i have been dealing with this i think that the one mainstay that has helped to keep me alive and able to use my hands and legs is motion and the function it permits. obviously there are people who dont have that option, those who for some awful reason progress despite pt or at a rate that exceed the capabilities of pt, but for those who are able to really need all of the help they can get.
when i first experienced the symptoms i thought that pt was exaserbating the problem and both my ortho doc and my pt (he was a good friend, i saw him for the first time when i was 9 and my knee subluxed and never seemed to go for very long without his expertise) had to sit me down and tell me that they understood that it hurt to do anything physical but the only chance i had to continue to function was to continue with pt. at least nowadays you can usually find a pt who has some experience with rsd/crps patients, when i started my pt read everything he could get his hands on but the reality was he was learning by trial and error with me.
for the recently diagnosed with lower extremity problems i have a question, can you find a pt who has some experience with a mirror box. it sounds random but there has been a lot of research and if you can trick your brain into thinking it is using a functional limb instead of the one that is displaying the symptoms. if you start using the box early the messages being sent to the brain can be rerouted, and the best part if you have touch sensitive problems the box doesnt cause a flare.
just a thought please dont feel like i am trying to offend anyone i just think that if there is anything that might help it is worth trying...if it isnt a possibility then at least you wont look back years later and say i wish someone had told me this is what i should have done and have regret.

One Question....I am very confused
 

Carrie,


I just want to discuss a few things you have brought up in your posts and I am wondering if your PM doctor may not treat RSD/CRPS very often. I may be wrong but there are a couple of things he has said which don't seem correct.
He is right in suggesting Stellate Ganglion blocks (I gather that is what he means by cervical blocks) as the fact you are so newly diagnosed these maybe all you need to stop your RSD/CRPS advancing or in fact put it into remission.
I don't understand how he can state that IV Ketamine won't work:confused:
It is just about the most bizzare thing I have heard as NOBODY can accurately predict the outcome of a Ketamine Infusion.

I also think that physiotherapy is very much warranted and needed at this early stage of your RSD/CRPS, especially with a PT who has a working knowledge of the disease.
PT isn't just about the excercise, it is to help keep joints mobile and muscles from tightening. It surely is painful but I feel that the result of NOT moving can be equally painful and if you can prepare with analgesia beforehand then it really is beneficial.
I was unfortunate that I did not have early intervention and am now suffering the consequences with contractures, dystonia etc.
Physiotherpists who are knowlegable about RSD/CRPS should also be investigating the use of graded motor and mirror imagery--this has also been found to "trick" the brain into a different way of thinking about the pain.
I know that some people may think that this infers that the 'pain is in your head' but that is not what it means, but it is the brain that receives and registers all pain.

It is fantastic that you have already have had a consultation with Dr S.
His intervention this early is the best possible outcome you could have.
Wishing you heaps of luck
Tayla:hug:

hey tayla
 

great minds think alike...pt mirror box:D

Hi Carrie,


If your skin is red and warm (maybe like a mild sunburn), you are in the acute stage; the time when everyone agrees RSD can go into remission. The problem is that no one has any idea why people get better during this stage: Except me.

I write a lot about RSD here, mostly saying it is a disorder called ischemia-reperfusion injury (IRI); but I'm not even gonna try to convince you of that right now. I'm only here to tell you that two of the OTC meds that have been suggested here have been shown to be efficacious in clinical research: They are antioxidants and DMSO (an antiinflammatory/antioxidant).

(I will be happy to send you the research abstracts, just click on the "rsd_hbot" link below).

Should you decide to look up some of my previous posts, I need to warn you that I talk about the chronic stage of this disease, NOT the acute stage; and they are completely different. We are all in the chronic stage, and there is no known widely efficacious treatment for chronic RSD (not even ketamine). For us, it is incurable; for you there is still hope.

I hope you'll post more about your symptoms because I know that everyone here wants to learn as much as we can. You have a willing audience that is also willing to give lots of advice; much of it disagreeing with other advice...Vic

Vicc,
You said:-



If your skin is red and warm (maybe like a mild sunburn), you are in the acute stage; the time when everyone agrees RSD can go into remission. The problem is that no one has any idea why people get better during this stage: Except me.

Don't you think that if you believe you hold the key to this disease that it would only be fair to share it with the thousands of scientists who have been working on finding a solution for both prevention and cure of RSD/CRPS for decades??


Tayla

Tayla,

If I could figure out a way to reach those thousands of physicians, I would be doing just that. Since I can't, I'm trying to reach people with RSD.

I try to explain how ischemia can cause every sign and symptom of RSD, and hope someone will see that it is caused by the ischemia in ishcemia reperfusion injury (IRI). I plan a post in the near future that will show why RSD can't be the result of a nerve injury.

I can't save the world, but I like to think I help a few people...Vic

Vicc,

I don't believe anyone implies that RSD comes as the result of 'a nerve injury' except of cause for CRPS type 2.

I believe that RSD/CRPS is usually the result of some initiating event in or to our bodies that sets off an unusual response by our sympathetic/autonomic nervous system .To find what allows some people to succumb to this disease where others don't, would indeed unravel the puzzle of prevention and cure.

Not everyone who has RSD/CRPS has had a reperfusion injury as they have not experienced an ischaemic event which causes IRI. Nor do all people go through the stages of RSD/CRPS that you have suggested in your post to Carrie.
Tayla

Let's please get the thread back on topic and to supporting a member as we can in the ways needed.

Thanks,

KD

TO ALL:

Let me explain my situation to ALL again...

1st symptom started 7/20/2007 - Don't recall having an injury - was stressed out like CRAZY!
it spread like CRAZY in 1 MONTH even a few weeks
my PM doc works VERY close with Dr S - he is only 30 minutes from him
He also is starting a ketamine IV suite in his office later this month.
They hardly EVER see it spread this fast in a patient.
I am supposedly a RESEARCH SUBJECT of some sort of Dr. S
I have a follow up appt next week with him and his team
That is how I got in so fast and how I got on the list to Germany.
my prognosis is I may be in a wheelchair in a couple of months. I'm getting worse each day. I have dystonia in my left arm and they are going to do a cervical block to see if will help and bring my arm back down again.
Other than that they say IV ketamine will help me will i'm waiting to go to germany but we are fighting with the insurance company.
Like I mentioned before this is ALL so new to me, most of you have been dealing with this for some time, even years.
I've learned so much from the week or so that I've been a member. please continue to be supportive and resourceful.
carrie

Carrie,

It is very much in your favour to have Dr S on your side and so lucky you have contacts:)
You are a perfect example of how this disease can hit without any particular inciting event and that we do not all follow any set pattern when it comes to signs , symptoms and progress of the disease.
I do hope you can get your Ketamine infusion as soon as possible--it sure sounds as though you need the intervention of someone as experienced as Dr S.
I am sending you all my very best wishes that you get an answer and that things turn around for you soon---this can be a scary disease BUT THERE IS HOPE.
love Tayla:hug:

Desi, That's terrific so hope the relief grows.

Auberon

:winner_first_h4h:

Dear Desi,

Good for you! With your fantastic attitude you can't help but succeed.
My fingers and toes will be crossed for you when you have your next round of blocks:heartthrob:


Love Tayla:hug:

I think I have read a whole lot of these Dutch guidelines regurgitated here on NT.:rolleyes:
They are a MUST read !!!!
They are light years ahead of us in treating RSD/CRPS
They have national guidelines on the topic- pretty impressive no? ;)

Please enjoy if you have not done so already :)


CRPS_I_Guidelines_patient_version-1.pdf


peace

GnP

Hi Carrie,
 

I am hoping you will see some difference in the block and it will make them see that blocks, PT and meds can help get you doing better quicker then having to wait to go to Germany.

I spent 4 years in PT. My insurance company fought me many times and finally gave up. My diagnoses went from back problems to TOS and then Fibro and RSD. I woke up one morning and couldn't get out of bed and that's when my Dr. immediately started PT.

I had 3 blocks that helped put mine into remission. I will say though that what I call remission is walking around, mimimal pain unless the weather or my overdoing things makes it worse. I still have the swelling at times, I still have the discoloration when I walk and swing my arms and hands but it did help put them into remission to where we aren't dealing with it all of the time. I use to cry and beg the Drs. to cut my right arm off.

I feel like Tayla on the PT. and blocks. Both kept me going and got me to a point to where I am on minimal doses of meds.

Good luck in whatever you find that works for you to get better.

Ada