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!