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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hey there,
I feel for u. I'm in the same situation. Trying to understand, trying to accept. Its the most bizzarre disease that I have ever encountered. All that u r saying, myself and many others are in the same boat as u. I'm sorry u are having a hard time. I don't have much advice for u unfortunately. I'm still trying to figure it out. I'm going on 30 days w/o sleep. Every 3 or 4 daays I get maybe 3 hrs but at this point I have ginormous bags under my eyes, I'm so sleep deprived I break down and cry at the drop of a pin. I have had 3 stellate ganglion blocks, 2 of them worked slightly. 2 wks relief tops. I'm praying for the sleep thing to get better. As for the temp issues-for me I will suddenly be drenched in sweat for no reason then since I'm in ac I get chills. My L hand used to feel frozen from inside out if ice was put on my shoulder @ pt so that had to stop but now I CANNOT touch anything cold w/my L hand cuz it burns for hours after. I have an "ove glove" like a potholder shaped like a glove, helps to protect a bit from the cold. Not sure if u have that issues. W/rsd/crps, unfortunately it is different for everyone. But the one constant is PAIN, severe pain, embarrassing side effects, stress, so many things.

I'm glad to hear that you are able to work a bit. I have been on leave from work for 8 months now and the disease is only progressing further. I may have to make a huge life change I'm not prepared for.

My advice is find a good pain management dr. I am on my 3rd&final. W/rsd pain meds is sorta necessary, however ensure your dr is not just doping u up w/narcotics&getting u hooked (happened to me) but that your dr is actively examing u & any changes to your body, as well as aggressively trying to combat it with methods such as stellate ganglion blocks, tens units etc. Also, one of my huge challenges is physical therapy, however it is a necessary evil. The worth thing one w/rsd can do is avoid moving/strengthening the affected area cuz then your muscles will atrophy which I'm sure u know. In the beginning (after my car accident) I couldn't move my arm at all, but I forced myself to continue w/pt, although it can be exhausting & incredibly painful, its important u find a knowledgable pt who knows how to handle your limits and keep u moving to avoid atrophy, try to keep that area as strong and keep as much range of motion as possible.

I'm very sorry u r struggling, it is a very stressful, frustating & anxiety provoking disease that sucks but all we can do is keep fighting and do the best we can for ourselfves, keep friends&family around-and ensure they are educated so they know & understand your pain so they can help and not get frustrated themselves. I have had to encourage my family to research it so they understand more since they get worried that I am not active anymore and I am more moody at time, when the pain becomes too much its difficult to. Keep the monster & frustration inside.

Best of luck to you!

*Kerry*





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