Chronic Pain Sites
The sites listed below are ones that I've found to help me learn about
neuropathic pain, specifically CRPS (RSD). If you know of any sites
that are not listed here, please let me know at robyn@alumni.carnegiemellon.edu.
Thank you.
NEW! Make
Your Voice Heard!
"Write your Congressperson to urge him or her to co-sponsor H.R. 1863,
the Pain Care Policy Act of 2003. This bill, when enacted, will help
make pain care research, education, and treatment a priority within
certain federally funded health care programs and facilities. This
proposal will encourage more assessment and appropriate treatment for
people in pain being served by many of our federally supported health
care facilities. Write a personal (handwritten) letter."
- American Pain Foundation:
Writes a weekly (or thereabouts) email newsletter about advances in
pain research and legislation relevant to chronic pain sufferers.
- American RSD Hope Group:
Contains the most easily accessible information about RSD & CRPS.
Most of it is accurate although there are a few points presented as
fact when they are probably what works best for the person who wrote
the article. Nevertheless, a very informative, worthwhile site. The
best I've found so far.
- For Grace: An
organization for those with RSD/CRPS. This web site is growing. The
best part about it is other people's stories.
- International
Research Foundation for RSD/CRPS: I haven't spent a lot of time
here yet. More later.
- NINDS
CRPS (also called RSDS) Information Page: The National Institute of
Neurological Disorders and Stroke page about CRPS. This page presents
some basic facts about the disease. It's a good starting point.
- CRPS
(also called RSDS) Fact Sheet: The National Institute of
Neurological Disorders and Stroke fact sheet about CRPS. Again, a good
starting point, something to email friends and family so they get an
idea of what CRPS/RSD is all about.
- Mankowski Pain
Scale: One woman suffering from pain created her own pain scale to
give to her caregivers. I used this approach, and my neurologist
thought it was wonderful. It's a good communication aide.
- WHAT IS
REFLEX SYMPATHETIC DYSTROPHY SYNDROME (RSD)?: A page from the RSD
California web site that describes RSD. It's more thorough than the
NINDS pages, but not as thorough as the American RSD Hope pages.
- RSDSA, Reflex
Sympathetic Dystrophy Association: I've never been able to navigate
this site properly. Further, much of the information seems to be about
what did not work for this one person. From the number of buttons on
each of the pages, it seems like there would be more information than
there is. There is a list of articles and references, but much of it
seems to be older. That could be due to when articles are published on
the Net. In the end, it's a lot of flash, little substance. Sorry.
Remember: A web site is not the
same as a doctor! Take any information you find to a medical
professional. If you need help finding a pain management specialist,
try the site, It Takes
Nerve.