http://www.rsds.org/3/pdf/Modified%2...ster-RSDSA.pdf

INTRODUCTION
Complex regional pain syndromes
(CRPS), formerly referred to as reflex
sympathetic dystrophy and causalgia, are
neuropathic pain states that continue to be
therapeutic challenges.1 Although these
syndromes were described decades ago,
their epidemiology has not been well
studied.
The incidence, prevalence and natural
history of this syndrome as well as the
profile of patients suffering from the disease
is uncertain. Knowledge of the demographic
distribution, e.g., age, gender, race, and
occupation, is based on small sample
sizes.2,3 Moreover, the clinical approach to
a patient suspected to have CRPS is
complicated by a lack of precision of
diagnostic criteria and minimal evidencebased
information on treatment options.
INTRODUCTION
Complex regional pain syndromes
(CRPS), formerly referred to as reflex
sympathetic dystrophy and causalgia, are
neuropathic pain states that continue to be
therapeutic challenges.1 Although these
syndromes were described decades ago,
their epidemiology has not been well
studied.
The incidence, prevalence and natural
history of this syndrome as well as the
profile of patients suffering from the disease
is uncertain. Knowledge of the demographic
distribution, e.g., age, gender, race, and
occupation, is based on small sample
sizes.2,3 Moreover, the clinical approach to
a patient suspected to have CRPS is
complicated by a lack of precision of
diagnostic criteria and minimal evidencebased
information on treatment options.

METHODS
Subjects diagnosed to have CRPS by
their treating physicians provided
information through a questionnaire posted
at the Reflex Sympathetic Dystrophy
Syndrome Association of America (RSDSA)
website. CRPS patients were invited to
participate in the survey, hosted for 6
months from October 2004 to February
2005 (www.rsdsa.org).
Reminders were sent through e-mail to
members of RSDSA encouraging
individuals to participate in the study.
The 75-question survey was guided by
gaps in the epidemiology of CRPS and a list
of e-queries to the RSDSA website during 2
prior years.
METHODS
Subjects diagnosed to have CRPS by
their treating physicians provided
information through a questionnaire posted
at the Reflex Sympathetic Dystrophy
Syndrome Association of America (RSDSA)
website. CRPS patients were invited to
participate in the survey, hosted for 6
months from October 2004 to February
2005 (www.rsdsa.org).
Reminders were sent through e-mail to
members of RSDSA encouraging
individuals to participate in the study.
The 75-question survey was guided by
gaps in the epidemiology of CRPS and a list
of e-queries to the RSDSA website during 2
prior years.
Diagnosis/Treatment/Employment
• Physicians making the initial diagnosis –
Orthopedic surgeons – 32% Pain specialists – 19%
• Diagnosis made based on –
Clinical examination – 45.7%
X-rays – 34.7% Bone scan – 35.4%
MRI – 35.3% Sympathetic nerve blocks –
46.4%
• Pain descriptors at the disease onset –
Burning – 83% Sensitive to touch – 80%,
Sharp – 69% Shooting – 57%
Aching – 56%
• Common drugs used to treat pain –
NSAIDs – 63% Gabapentin – 47%,
Hydrocodone – 45% Oxycodone – 39%,
Cox-2 Inhibitors – 38% Tramadol – 37%
Morphine – 29%
• Interventional therapies-
Nerve blocks – 68% Spinal cord stimulation – 5%
Sympathectomy – 6% Physical therapy – 76%
Counseling – 37%
• Work
Work-related Injury – 41%
Workmen’s Compensation – 30.4%
Pain interfered with work – 93%
• Present employment status
Disabled – 60% Full-time employed – 16%
Part-time employed – 6%
Diagnosis/Treatment/Employment
• Physicians making the initial diagnosis –
Orthopedic surgeons – 32% Pain specialists – 19%
• Diagnosis made based on –
Clinical examination – 45.7%
X-rays – 34.7% Bone scan – 35.4%
MRI – 35.3% Sympathetic nerve blocks –
46.4%
• Pain descriptors at the disease onset –
Burning – 83% Sensitive to touch – 80%,
Sharp – 69% Shooting – 57%
Aching – 56%
• Common drugs used to treat pain –
NSAIDs – 63% Gabapentin – 47%,
Hydrocodone – 45% Oxycodone – 39%,
Cox-2 Inhibitors – 38% Tramadol – 37%
Morphine – 29%
• Interventional therapies-
Nerve blocks – 68% Spinal cord stimulation – 5%
Sympathectomy – 6% Physical therapy – 76%
Counseling – 37%
• Work
Work-related Injury – 41%
Workmen’s Compensation – 30.4%
Pain interfered with work – 93%
• Present employment status
Disabled – 60% Full-time employed – 16%
Part-time employed – 6%
Demographics of study patients N = 1359
Supported by a grant from RSDSA Supported by a grant from RSDSA
Hx of remission – 21.3%
Currently in remission – 18.3%
Course of
disease
California – 9.3%
Pennsylvania – 8.6%
Florida – 7.9%
Main regions
( states)
Read more on the site...

Hope

Dear Hope -

Thank you for posting this. It was my understanding that the primary thrust of RSD work at Johns Hopkins was through their pain medicine program within the Department of Anesthesiology and this seems to bear that out. Mind you, this is interesting information, especially some of the data regarding disability. But, if you put it another way, it doesn't seem like Johns Hopkins is a place where they are doing much heavy lifting right now in terms of actual research on the underlying causes and non-palliative treatment of this illness, outside of Dr. Ursula Wesselmann's work on female pelvic pain issues.

I had put in a much longer response to your post, concerning my recent inability to get a neuro-immunological workup for RSD at Johns Hopkins, when I realized that it was duplicative of threads I put up just a few weeks ago, see, e.g. http://neurotalk.psychcentral.com/sh...=Johns+Hopkins. One pertainent point I forgotten to mention earlier was that I was indeed offered of referral to their pain management group, but that we agreed that there would be little point in doing that if I was already under the care of a board certified anesthesiologist, and happy with the care that I was receiving in that regard, which I am.

(Nice to have these search functions available on the web-page so that a memory challenged individual such myself can occasionally avoid making a complete fool of said-same-self.)

Mike

p.s. And compliments to Jim Broatch for his participation in the study as well.