Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 09-13-2014, 04:50 PM #1
HarryDresden HarryDresden is offline
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Default Diagnosed with CRPS today; have questions

Greetings,

Quick bio:
male age 29

Broken toe four months ago. Pain has and continues to feel local to my toe.

first month ~ pain about what i would expect. At worse it was like a 4 when I had to wear shoes.
second month ~ getting better
third month ~ getting better. At this point the pain was just tingling if elevated. Light throbbing if i walked on it.

4th month ~ Bone Scan didn't show signs of rsd. I have head this is ~ 50% likely with lower extremities for someone my age. Got referred to a better doctor. Better doctor looked at x-ray, said it was crps. I got a "nerve block" that hour. The injection was directly into the foot.

At this point i'm nervous and anxious as resources online seem to indicate anything from "it will spread and get worse" to "generally mild cases can be resolved if caught within 6 to 9 months. However, everything agrees that earlier is better. I'm about 110 days into this and i'm not sure i'm even early anymore.

I know at the moment my symptoms/pain are a 0.5 out of 10, which is nothing compared to how bad it can be.

I know a forum isn't a substitute for medical professionals, but i'm curious if anyone has any suggestions on what I should research next.
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Old 09-13-2014, 05:58 PM #2
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Welcome HarryDresden.

Someone will be along to help.
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Old 09-14-2014, 08:17 AM #3
HarryDresden HarryDresden is offline
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Quote:
Originally Posted by HarryDresden View Post
Greetings,

Quick bio:
male age 29

Broken toe four months ago. Pain has and continues to feel local to my toe.

first month ~ pain about what i would expect. At worse it was like a 4 when I had to wear shoes.
second month ~ getting better
third month ~ getting better. At this point the pain was just tingling if elevated. Light throbbing if i walked on it.

4th month ~ Bone Scan didn't show signs of rsd. I have head this is ~ 50% likely with lower extremities for someone my age. Got referred to a better doctor. Better doctor looked at x-ray, said it was crps. I got a "nerve block" that hour. The injection was directly into the foot.

At this point i'm nervous and anxious as resources online seem to indicate anything from "it will spread and get worse" to "generally mild cases can be resolved if caught within 6 to 9 months. However, everything agrees that earlier is better. I'm about 110 days into this and i'm not sure i'm even early anymore.

I know at the moment my symptoms/pain are a 0.5 out of 10, which is nothing compared to how bad it can be.

I know a forum isn't a substitute for medical professionals, but i'm curious if anyone has any suggestions on what I should research next.
My doctors have told me its likely this won't spread and won't get worse. TA lot of sources online are telling me they its almost random who the symptoms come and go. Where can i pin down some answers with studies and percents attached?
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Old 09-14-2014, 12:55 PM #4
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Hi Harry,
Welcome to a very friendly place where you can find info, help or just chat and vent.
Try this site. It might be helpful...
http://www.rsdrx.com

Good luck...
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Old 09-16-2014, 08:17 AM #5
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Hi Harry, welcome. So sorry you had to come and become a part of the family. It is good to research what you are going through. Just keep in mind everyone is different. I would hang on to the hope that earlier is better. I still do and fell in Dec. 2013 and was diagnosed in March 2014. The family here is really helpful and friendly. I have found that some will share links that will lead to lots of information. Check them out and also check out all the links under the stickys at top of the forum. You can also check out Dr. Hooshmand in Vero Beach Florida his site is full of info. I hope this helps. Take care and never lose hope.
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Old 09-16-2014, 04:47 PM #6
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Hi Harry. Just want to reinforce the fact that if you are down to 0.5 --- you are LOOKING GOOD my man And point out the fact that a lot of the people who are established posters on this forum represent the less fortunate percentage of people diagnosed with RSD.

Man, when I got down to a 0.5 I threw myself a party

Further reading that helped me: http://www.rsds.org/pdfsall/treatmen...ee-radical.pdf

I used 50-50 DMSO/vegetable glycerin on the affected site and NAC 600mg 3x daily for 90 days. "DMSO for the site and NAC for the spread." Was how I looked at it.

Further recommendation - you can turn yourself into a stressball reading all the negative things that CAN happen as a result of RSD. I respect that you want to know what you're up against and are concerned, but from personal experience - reading negative things turned me into a stressball and made it worse.

Best to ya mate.
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