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 11-11-2011, 09:38 AM #7
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catra121 catra121 is offline
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Quote:
Originally Posted by angelbear View Post
this is me 24-7 and even with the pain medications. my scs is broken and has to be replaced. and I am in between pain doctors. I hurt so badly, I have whole body RSD. I suffer everyday and night. does anyone have any ideals to help me..
What sort of things have you tried so far?

This description is very good...not everything is EXACTLY the same for me but I have experienced everything in there at one time or another in the past year. I agree with Lit Love that this is a picture of someone whose pain is not under control (though there are many reasons why this could be the case).

My pain is pretty high on a regular basis...daily it's between 7-10 on a scale of 1-10...it's been a LONG time since it was any lower than a 7. Sigh...we're working on it though...and after months and months of it being a constant 9-10...7 seems heavenly by comparison. But I'm not really currently taking anything for the pain...so that probably has a lot to do with it. I had to go off all my meds because I had a mild case of seratonin syndrome...that's what you get when you let docs just toss you on a bunch of meds all at once and start and stop you on meds without any tapering. Never again. That means the current process of getting me back on meds that help is a slow one...but we'll get there. The tens unit is the only thing really helping with the pain...don't know what I would do without it.

But also helping are heat, physical therapy, changing my diet (I think...not sure), and having found things that I can enjoy even when the pain is really bad (to help me take my mind off the pain).

I think anytime we can find something that helps us describe the pain and the loss that comes with RSD, it's a good thing. A coworker of my dad's sent him a link to a video about chronic pain as a diagnosis rather than a symptom. The presenter in the video explained how real chronic pain is and demonstrated with a feather...brushing it up and down his arm. He asked the audience to imagine what it would be like if doing something like that felt (instead of like a feather) like a blow torch being run up and down their skin (he had the blow torch in his hand to get the point across). Not that my dad didn't believe me before (my family is very understanding) but this video really put it in terms that he could understand and helped him really grasp how awful it is...and that barely touches the surface of how RSD affects us because it's really not just about the pain but also the loss that we experience in terms of the life we had before. This does a good job explaining some of that.
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