23 y/o female with RSD

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Moon112744
New Member


Date Joined Jul 2008
Total Posts : 5
   Posted 7/19/2008 8:27 AM (GMT -7)   
Hello, my name is Maria, and I am a 23 year old, former collegiate distance runner recently diagnosed with Reflex Sympathetic Dystrophy (RSD), a progressive and incurable nerve disease with the main symptom being chronic, debilitating nerve pain. I used to run 50 miles a week, and now, I have difficulty standing for more than 5-10 minutes.

I just wanted to say hello!

I keep a blog about my journey with RSD. Please feel free to check it out and spread it around if you enjoy it!
http://prefontaine44.blogspot.com/

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/19/2008 11:30 AM (GMT -7)   
Hi, Maria,
Welcome to the HW form. I am so sorry to learn of your diagnosis. Did you have an injury?

I would also encourage you, if you haven't done so already, to have a thorough evaluation at a treatment center specializing in RSD (I believe it's now called CRPS by many doctors). I wonder what cutting edge treatments may be out there for someone with your age and background. i knew a woman with RSD a couple of years ago who told me she'd read of doctors in Germany putting people in hyperbaric (sp?) chambers and about 50% had their RSD cured. This would be a highly risky treatment, though, and I don't know if anyone in the U.S. is doing it.

I should apologize as I've not visited your blog site and you may already know all of this!

Anyway welcome. This is a great group for support, and I know there are other RSD/CRPS folks in here.

PaLady
p.s. I did a quick read of the most recent entry in your blog and was quite impressed with your interviewing and writing skills. I haven't read any of your background, but wondered if a career in journalism was an interest?

Post Edited (PAlady) : 7/19/2008 12:47:28 PM (GMT-6)


tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/19/2008 2:57 PM (GMT -7)   
Hi Maria: I was told I had RSD also however it turned out to be meralgia parastica as they both have the same type of symptoms. Pa Lady was right
Germany is way ahead of us in RSD treatment I believe using ketamine treatments i/v while being hospitalized to regulate how much of the ketamine you can handle. I believe their success rate is very high and most people are cured after a couple of weeks of treatment. There is a specialist at Thomas Jefferson University Hospital ( Dr Swarztman ) who is doing the same type of treatments in Philadelphia Pa. Hopefully this helps ?
Tom Lasko


Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/19/2008 3:53 PM (GMT -7)   
Hi Maria welcome to the HW Forum. I too wanted to wish you a warm welcome and hope that you find the answers you desire. We are all here because we have one thing in common and that is pain to some degree or another. So if you need any reassurance or just to talk I am here for ya
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


Moon112744
New Member


Date Joined Jul 2008
Total Posts : 5
   Posted 7/20/2008 6:47 AM (GMT -7)   
Hi everyone! Thank you so much for the warm welcome and advice!

Hi everyone! Thank you so much for your kind, consoling words!

I've had RSD for about 2 years now, but it wasn't diagnosed until Feb of this year. It started out as a nerve compression injury from distance running 3.5 years ago. I had two surgeries and then the RSD started to develop.

I've already had a ketamine infusion that did not work because it seems my RSD is structural + scar tissue from my surgeries. I took a chance and had another tarsal tunnel release to fix it 4 weeks ago. My surgeon is very very hopeful!

tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/20/2008 7:52 AM (GMT -7)   
Best wishes for a great surgical outcome

Tom Lasko


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/20/2008 10:08 AM (GMT -7)   
I'll second Tom's wishes! And be sure to let us know! We always like to hear the positive outcomes, too.

PaLady

Moon112744
New Member


Date Joined Jul 2008
Total Posts : 5
   Posted 7/21/2008 6:47 AM (GMT -7)   
Thank you! I hope I can tell a story of recovery very very very soon.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 11:21 PM (GMT -7)
There are a total of 2,736,222 posts in 301,362 threads.
View Active Threads


Who's Online
This forum has 151453 registered members. Please welcome our newest member, LvGuy1.
192 Guest(s), 2 Registered Member(s) are currently online.  Details
LvGuy1, (Seashell)


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer