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 09-24-2014, 11:13 PM #1
CRPSsongbird CRPSsongbird is offline
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Default back with good and bad news

Hey everybody! I'm so sorry I haven't been on in a long time. After the miscarriage I didn't do much of anything online. I'm way better in that regard. So the CROS might be going into remission in my left arm. However they think it's moving to my legs. ..... I already spent 2 months in a wheelchair over the summer. Then I lost my job and since I haven't had to be on my feet anymore it's a little bit better. I can walk on my own now but the massive swelling is coming back... I'm getting a little bit overwhelming and scared but trying to stay positive. There's a new specialist that has spent her entire education/career studying crps and PN so I might be able to get a much clearer diagnosis! I love you all! Wish me luck!
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Old 09-25-2014, 08:42 AM #2
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Hi Bird,
I'm sorry for your lose. Battling CRPS is bad enough without all that else can happen to us. Much luck on the new doctor. I hope she helps you find relief...
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Old 09-25-2014, 10:47 AM #3
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Hi Songbird. I'm so sorry for your loss. I am also sorry that your rsd is causing you so much pain and has spread. I hope that the new specialist you're seeing can help you. Don't give up hope my friend. My thoughts and prayers are with you. Take care.
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Old 09-25-2014, 12:56 PM #4
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Hey Bird!

Great to hear from you, but sorry for your struggles. I have been thinking about you and wondering how you are doing. I hope that new specialist can help you out...wish I could find one around me that knew something about this horrible disease!

I have not been on here much myself, but do pop in on occasion. Been having a rough time myself too.

Anyway, so good to hear from you. Sending you hugs
Nanc
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Old 09-27-2014, 06:10 AM #5
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Quote:
Originally Posted by Nanc View Post
Hey Bird!

Great to hear from you, but sorry for your struggles. I have been thinking about you and wondering how you are doing. I hope that new specialist can help you out...wish I could find one around me that knew something about this horrible disease!

I have not been on here much myself, but do pop in on occasion. Been having a rough time myself too.

Anyway, so good to hear from you. Sending you hugs
Nanc


Hugs right back at you! I hope you're feeling as great as you possibly xan! Sometimes what helps me most is to just focus on the wonderful things that are all around us. Sometimes they're hard to see, when we're blinded by the fog of pain, but love, especially God's Love, can burn that fog away just like the beautiful sun!

I'm having one of the most severe flare ups tonight. I can't sleep, I just barely stopped crying from it, but I think the worst is passing. Love to you! Stay strong!
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Old 09-27-2014, 08:07 AM #6
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Lightbulb

I would like to suggest that you get tested for B12 deficiency and if you are below 400pg/ml--- get that result in numbers--- to
begin B12 supplementation ASAP. Neuropathy that spreads to legs can be due to combined degeneration of the spinal cord, which is a serious life threatening form of low B12.

Since you have one opinion of "neuropathy" this should be looked at before you become permanently disabled.

Also get Vit D tested... low D impacts chronic pain in many patients with chronic pain. Sometimes just fixing this, leads to relief. (we have had PN patients here on our board who discovered this result).

This long video explains more:
http://www.youtube.com/watch?v=BvEizypoyO0
It is very sobering!
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