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 02-13-2015, 10:37 PM #21
maygin maygin is offline
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Sorry, I didn't really state my point in my post - An earlier poster is right, it is what it is and it's going to do what is going to do. There is no magical solution. I'm not saying that is easy to accept that at all - I haven't yet - but it might be good to keep in mind as much as possible. I wish you the best.

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Old 02-14-2015, 12:57 AM #22
crpsspoonie12 crpsspoonie12 is offline
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Originally Posted by maygin View Post
Sorry, I didn't really state my point in my post - An earlier poster is right, it is what it is and it's going to do what is going to do. There is no magical solution. I'm not saying that is easy to accept that at all - I haven't yet - but it might be good to keep in mind as much as possible. I wish you the best.

Thank you Maygin for telling me your story. Honestly, even though it is scary and I'm sorry it is happening to you too, it comforts me in a way knowing that I'm not the only one. I'm sorry that you are dealing with this, because it sucks. Thank you for the recommendations, I will definitely bring those up to my doctor. Is the drug you mentioned as the first usual step addictive? Yeah I'm in college right now so maybe it does have to do with my stress levels being too high. Thank you for your support I hope you stop having spreading
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maygin (02-23-2015)
Old 02-14-2015, 01:02 AM #23
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Originally Posted by Russell View Post
Hi again Spoonie,
My CRPS started in my left arm by having surgery after a bad accident. It seemed to spread sort of randomly but once I fell breaking my right wrist the spreading quickened. After that surgery I became full body rather quickly.
In my case my CRPS is complicated by also having cerebral degenerative atrophy.
I fall a lot when I try to do something out of my wheelchair.
So my answer to you is once I suffered a trauma after having CRPS the spread sped up and it became full body within two years of the initial accident.
I hope I explained myself correctly and somehow helps you...
Russell,
Yes you did explain yourself correctly and it does help . Thank you for sharing your story with me. Even trying to do things outside of your wheelchair is great. Your strength is very inspirational. Don't give up! I hope you have better days. Thanks for helping me with this
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Old 02-23-2015, 10:29 PM #24
maygin maygin is offline
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As far as I know, gabapentin is not addictive in the way that perocet and the other opiods are; however, the body can become used to it, so one cannot just stop taking it without stepping down on it. The biggest side effect is drowsiness, which hit me hard for the first month, but then went away.

There are many other medication options. A drug that works for one of us might not work for you. But pain is a resource hog, so it's important to get it under control, especially if you want to stay in school.

While I have no proof of this, I believe that my working 12 hour days 6 days a week leading up the election caused the spread. The pain was super concentrated before that. Of course, stay in school if you can; I just urge you to pace yourself and try not to get super stressed and overwhelmed. It might be a great idea to see a therapist to help with relaxation techniques to get you through the stressful times, like finals. There are things besides medication, like positive thinking, mirror box therapy, desensitization, laughter therapy, yoga, meditation, thai chi, and qi quong that can help with the pain and reduce stress. Try out each and see what works for you. There might even be videos at your school or a free class. For me, most of that didn't work until the pain went from intolerable to tolerable with medication. Mirror box therapy and desensitization were the only things that moved the pain notch a little before we found meds that worked. I wish you the best. You are welcome to PM me if you ever want to talk. I'm so glad my post made you feel less alone. There is power in feeling like you aren't the only one. Take care!
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Old 03-04-2015, 04:34 PM #25
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Originally Posted by maygin View Post
While I have no proof of this, I believe that my working 12 hour days 6 days a week leading up the election caused the spread. The pain was super concentrated before that.
Hi Maygin,

I'm so sorry to hear of your continued problems.

Totally, totally agree with you on this. 2 years back, I could "feel" the thing spreading, and I had been burning it hard on both ends, with rehab efforts and projects for work. After one particularly stressful 12 hour day I ended up in the ER, and they all scratched their heads the same way.

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Originally Posted by maygin View Post
I believe stress had caused spread in my case. On February 6th, I had an e extremely stressful day and the spread to my knee started after that. I have problems with meditation and I can't do many types of yoga right now, but I still highly recommend anything that reduces your stress.
Yes yes and yes. It's tough to meditate when you're on Threat Level Orange Pain Alert, but it helps, a LOT. I just sit as comfortably as possible, close my eyes and repeat "I AM" internally for 15 minutes. Just a nice quiet repetition in my head. Sounds cheesy but try it. The mantra forces the mind to quiet down.
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