Can Someone Explain This!!!
 

I just don't understand why RSD is considered a RARE Mysterious disease. I live on Long Island NY and personally know 4 RSDers within 2 miles of my house. I have heard and read that about 1/2-1 million people have RSD. I just also heard that only about 30,000 people in the US have Huntingtons Chorea which is much more well known. Why isn't the word getting out there. There is a big fund raiser in Central Park (Manhatten) and there were only about 125 people there supporting RSD last year.

Any thoughts- this is driving me nuts!

i have to say i was a registered nurse for years before the rsd curse hit me and i had never heard of rsd. i never once heard a patient give it in a history that we would do on every admission. so, it is not well known at all. i know of no one in my area who has it. and that is what most people with rsd say. they thought they were the only ones .... joan

Hi Deb,

I have been totally frustrated at times over or exact words. I have alot of thoughts on this personally. But it is just my opinion, and I do not feel comfortable posting what I think. I've often wonder why the name was changed from RSD to CRPS as well. Hugs, Roz

Hi Deb, Like Joan I was an RN as well and had never heard of this condition prior to getting it myself. I know that many rsd sites mention there are many of us with this problem but I only know of 1 other in my area that has it. Most doctors I went to hadn't heard of it either. Could it be that only a minority of us don't get better? I would imagine that the ones that do recover simply go on with their life and don't mention it. That might explain why we don't hear of it so often. Just a thought. Like you it does tend to get on my nerves. I'm always having to explain to people what it is because none of them have heard of it either. Hope you are having an OK day..Jeannie

Yes, an sometimes i don't even know how to explain it!! a nerve disorder? a pain disorder?? how does one make it short and sweet and yet try to get the intensity of it across???? beats me. joan

Explain?
 

It's the worse having to explain it to doctors! I have had them stare at me like I made it up, or heard it on a fictional program on the Sci-Fi channel :rolleyes:

There have been some that, I swear, leave the exam room and go to their office to look it up. Sigh!

Mike

i would bet that there are some who go look it up! probably more than we realize.
sometimes i think the rsd is something from the sci fi channel! i wish i could turn it off!

Strange, Debbie, that you have so many people around you with RSD! I had never heard of it, neither did any of my family, neighbors, church family, friends... and some of my drs./ physical therapists didn't know what it was either! Oh, one exception- a friend had it, but he has been in remission for 12 years, after battling it for 13 months!

I had the opposite question: how do so many Americans have RSD, and so many people that I know have no clue about it, and they've never heard of anyone with it?!

Hi!

No, I'd never heard of it either and don't know anyone who has, or who has it. Medics here, though, have certainly encountered it; I'm told the incidence in SE Asia is fairly high.

Deb, get your water tested! (:p only kidding..) Ada said she has a couple of neighbours with it too.

But the problem lies as much in the names themselves. Someone here (sorry, can't remember who off the top of my head) has a sig that goes something like "the more names they give to a disease, the less they know about it" - and, as Plato said, "They certainly give very strange names to diseases".

Try these on for size:
"'Stocking and Glove' Syndrome, Reflex Sympathetic Dystrophy Syndrome;, Shoulder-hand Syndrome, Steinbrocker Syndrome, Sudeck's Atrophy, causalgia, Sudeck's osteodystrophy, posttraumatic osteoporosis, algodystrophy, peripheral trophoneurosis, algoneurodystrophy, reflex sympathetic dystrophy, RSD, causalgia, Sudeck's, Sudeck-Leriche syndrome, minor traumatic dystrophy, major traumatic dystrophy, Reflex Neurovascular Dystrophy, neurovascular dystrophy, reflex neurovascular dystrophy, post-traumatic vasomotor disorder, sympathetic neurovascular dystrophy, post-traumatic vasospasm, complex regional pain syndrome, CRPS.

And I don't think that's a complete list.

Both RSD and CRPS are completely forgettable acronyms. RSD is marginally easier than CRPS, which is ridiculously hard to remember, and as for both Reflex Sympathetic Dystrophy and Complex Regional Pain Syndrome...... need I say more??!

We remember medical diseases with only 2 words in the title much more easily, and specially if there's someone's name in it, or it's elegantly foreign. We just need a Dr. Huntington, Parkinson, or Addison to come up with a breakthrough, oh yes! Or possibly a Dr. Epstein-Barr or Alzheimer. Of course, I jest, we'd also need a couple of celebrities to develop it too, and go public with it.

BTW, I usually don't bother with the name, if I say it people (including friends) instantly lose interest - I am *so* familiar with that glazed look in the listener's eyes - I just say "it's a nerve disorder that fires pain signals 24/7" and leave it at that. Then they glaze over and lose interest anyway :rolleyes:.

all the best!

PS -Just wanted to add, the way it is now, you could find a whole street, one person has RSD, nextdoor neighbour has Sudecks', person opposite has CRPS, across from him is the guy with causalgia, just down the road is the lady with algodystrophy, her neighbour's daughter has RND - and none of them realize it's all the same condition, because their doc has called it one thing only and hey, why ever should you be looking for even a second name??

i had never heard of RSD before being diagnosed. no one i know has had it and no one i know has ever heard of it. after my surgeon told me i had RSD she sent me to the pain doc for treatment. i went to my GP 2 days ago and he told me his mother has it. weird.

Hi Debbie,
My thoughts on this are a bit different, but it is NO surprise to me that is was first discovered during war time. Hugs, Roz

As a reply to Artist's post, I've kind of always wanted to tell everyone I meet a different name for this disease. So one friend would think I had RSD, one CRPS, one Sudek's atrophy...it would be a way of amusing myself.

I've read all of the statistics, all of the stuff about RSD not being rare like everyone else. Ever heard the old joke that 87% of statistics are completely made up? Yeah, I just put down 87 because those were the first two keys I touched.

I think that the real problem is that we don't know the real incidence of RSD. I've met enough people with it to skew my perception if I let it! Personally, I tend to think that RSD isn't technically rare. I consider it in the realm of uncommon and unknown.

Plus, the people who find this board are possibly the uncommon ones as well. It's easy to forget that there are many people out there who developed the early stages of RSD, were treated quickly, and never had a problem again. I know (as in, have met in person several times) at least two people who fall into that category. One was a girl who went to school with me, one was the mother of a close family friend. Neither of them has spared a second thought about RSD since. It just didn't last long enough to have a huge impression on their lives.

One thing I'd like to know is, if they find a genetic predisposition for RSD, are there certain groups that are more likely to be effected than others? If so, it might account for some regional variability in numbers of people who develop RSD. But I have no idea if that's true or not, and it can't really be seen with any of the data we have right now!

-Betsy

What is the public response to Paula Abdul? She's accused of being drunk or on drugs. Did anyone see the SNL skit about her right after the People magazine article came out? They said she had the "crazies"! I used to be a big fan of SNL. Haven't watched it since.
Maybe that is one reason more people don't know about RSD. Some people do think we are crazy.
But, I have other theories on why there is not more awareness. Maybe the same as Buckwheat's.
I'm again on my individual campaign to increase awareness & if someone think's I'm crazy, I'm not going to let that become my problem.\
Has anyone here been involved with a RSD awareness bill?
Linmarie

Betsy,
As far as statistics, I took 4 stat classes in college & the one thing I learned is that you can just about prove anything with them.
Linmarie

How to get an awareness bill in your legislature
by Idamarie Scimeca Duffy

Make an appointment with your local state Senator. Give him or her a copy of the Delaware Bill and impress upon him that their state should follow the lead of Delaware so that the medical community becomes more aware of this insidious disease.

Once the Senator understands how important Awareness is, ask him or her to intercede with the chairman of the State Health & Human Services Committee. He/she will probably insist on your appearing before the committee (as I did) so be prepared to discuss "the Bill" and the positive effect it can have on so many of the state's citizens (voters)! If the Committee passes a Resolution it goes to the full Senate for a vote. If it passes the Senate, you must then get your Local State House of Representatives Member involved. This is easy since you already have an approved Senate version; but the same steps must be taken in the House as in the Senate, as explained earlier.

Once the House approves the Bill, then the Senator gets the Bill on the Governor's Signing Agenda. Even though our Senator (Amick) is a Republican, he had no problem with Governor (Minner), a Democrat, since our House and Senate Bills passed unanimously with no negative votes at all. Health & Human Services (HHS) then spreads the word to all State Licensed Medical Practitioners. (Thus, no additional funds are required because the cost of this comes out of the HHS budget.)

http://www.rsds.org/4/awareness/Advocacy/index.html

Hi Linmarie,

I am in agreement. You could go to 10 top researches with 15 different opinions. But I think they help some. Hugs, Roz :hug:

For those in CALIFORNIA:

http://boxer.senate.gov/

http://en.wikipedia.org/wiki/Barbara_Boxer

Rsd
 

Paula Abdule's doctor retracted the statement that she has RSD- She has some kind of arthritis. I counted and I have met in person at least 20 people im my area (within 20 minutes of my house) who have RSD. Some I met in the doctors office (PM doc) and others at our support group and 1 at physical therapy. I think until someone famous comes out we are out of luck- we need our Micheal J Fox

Hi Debbie,

I am very concerned about my Blood-brain Barrier. Hugs, Roz

Heya,

I went to college with another person who had RSD and one of my teachers mothers had RSD.

At uni, someone on my course's best friend at home has RSD.

I was out shopping in Cambridge with mum whilst I was in hospital a couple of years ago, went in to M and S to buy something - and the person who served me had been in hospital recovering from RSD the previous year.

When I was at boarding school I had 2 people my own age with full body RSD within a 30 minute drive of me.

I went to church with a specialised RSD OT who had dealt with loads of us.

My old GP practise had another RSD patient which is why I was diagnosed in 2 weeks as they recognised it.

My sister is a trainee nurse and has treated a patient with RSD in the arms and was the only nurse (and medical practioioner) on the ward who knew what it was (and because she's a bossy cow told the patient to stop whingeing and start moving. she is SO lovely - NOT).

BUT. Before I developed it I had never heard of it!! My mum used to be an orthopeadic nurse and worked with fracture clinics etc and yet, she had never seen it before. She is now a captain and sister RN in the army and has never seen it despite tons of trauma cases/ being asked to assist in review of trauma cases.

So why? Firstly I guess there aren't that many of us that stay on to get diagnosis's or who don't recover properly. Secondly, It's all the name game - as Artist said there are so many names for this disease. Thirdly, to be honest quite a few of the people here are house bound etc - and so if people don't really know what's wrong then they can never discover (think what this disease would be like without the internet to find other people for support!). Before it would just be either "some form of pain" or something.. Deb - isn't Manhatten (is that the right place?) one of the most uber uber populated places?

I don't know. It's really bizzare! It should be better known.

As for changing the name from RSD to CRPS. I HATE CRPS, I won't even use the name. And as for drs, well, my GP still believes I have muscular dystrophy instead of RSD, as do most of my non specific RSD drs....because they see the word dystrophy and immediatly go "MD!"

GRRR.....

Love

Frogga xxxxxx

Hi,

Stumbled on this today, a small local study - I've put the most relevant bit in bold:

http://www.ncbi.nlm.nih.gov/entrez/q..._uids=12749974
1: Pain. 2003 May;103(1-2):199-207.

Complex regional pain syndrome type I: incidence and prevalence in Olmsted county, a population-based study.

* Sandroni P,
* Benrud-Larson LM,
* McClelland RL,
* Low PA.

Mayo Clinic, Rochester, MN 55905, USA. psandroni@mayo.edu

The objective of this study is to undertake a population based study on the incidence, prevalence, natural history, and response to treatment of complex regional pain syndrome (CRPS). All Mayo Clinic and Olmsted Medical Group medical records with codes for reflex sympathetic dystrophy (RSD), CRPS, and compatible diagnoses in the period 1989-1999 were reviewed as part of the Rochester Epidemiology Project. We used IASP criteria for CRPS. The study population was in the Olmsted County, Minnesota (1990 population, 106,470). The main outcome measures were CRPS I incidence, prevalence, and outcome. Seventy-four cases of CRPS I were identified, resulting in an incidence rate of 5.46 per 100,000 person years at risk, and a period prevalence of 20.57 per 100,000. Female:male ratio was 4:1, with a median age of 46 years at onset. Upper limb was affected twice as commonly as lower limb. All cases reported an antecedent event and fracture was the most common trigger (46%). Excellent concordance was found between symptoms and signs and vasomotor symptoms were the most commonly present. Three phase bone scan and autonomic testing diagnosed the condition in >80% of cases. Seventy-four percent of patients underwent resolution, often spontaneously. CRPS I is of low prevalence, more commonly affects women than men, the upper more than the lower extremity, and three out of four cases undergo resolution. These results suggest that invasive treatment of CRPS may not be warranted in the majority of cases.

PMID: 12749974 [PubMed - indexed for MEDLINE]

all the best :)

Hi Artist..Thanks for the info. I just finished reading an article in the RSDSA Review that painted a much bleaker picture. A Dr. Veldman from the Netherlands studied 829 patients at his clinic in the Netherlands and reported that 80% did not resume their former activitys.The John Hopkins on-line survey also revealed that 83% reported difficulty with mobility,54% with self care and 95% with usual activity. Isn't it amazing how much one study differs from another. I quess it shows that we can't put much faith in numbers. Personally, when I read a study that suggests that 74% of patients get better, it makes me feel that somehow I failed. But then I go on-line and check out all the rsd forums and see that I'm not alone. Hope you are having a good day....Jeannie

Hi Jeannie,

Your refs are bound to be more believable than the one I posted; that's from the Mayo Clinic and they have a slant on everything, ya know. I also know that the MC has had to back down on other research it's published because of clinical imprecision...

But I put it up anyway, it's a point of view and the only recent thing that I came up when I researched specifically small local USA studies (on the basis that environment sometimes matters). Anyway, I'm tending to take the word of Dutch researchers on pretty much anything to do with RSD/CRPS, they seem very unbiased and have a much more dedicated research network specifically involved in RSD.

Thanks, I meant to add a disclaimer to that ref, but time got me, LOL. I'll do that now - ignore my previous post, everyone!
Thanks again,Jeannie
all the best :)

PS *And* I see I didn't put the important bits in bold. Not one of my better days...ha!