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 09-10-2015, 06:14 PM #1
Amy durka lee Amy durka lee is offline
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Amy durka lee Amy durka lee is offline
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Default Hello all, I'm a newbie

After lots of searching I've finally found a place where I can talk about by RSD/CRPS. First I want to start of by saying or maybe asking...how do ya'll do it? Y'all are amazing!! My doctor thinks that mine originated from a forearm injury. It still looks and feels broke. There is this ball like thing(still running tests) in my forearm. The pain is burning and I've recently learned that icing it hurts and spreads it...who woulda thunk :/ I think I'm still kinda in the denial phase. I haven't lived an easy life so why not throw this my way too, anywho...I was in a bad car accident last October. That's when my rsd literally tried to kill me. I know that the rsd can't do it, but it can cause a stroke. Not saying that I've had one, still discovering new surprises. I have severe memory loss. I had to use a GPS for 3 months straight to get me to even the familiar places. My walking sucked. Luckily God has blessed me with an amazing boyfriend who takes care of me without hesitating. Everything still to this day seems so scrambled. My brain constantly feels like it's having a roast out, it burns and hurts. My chest always hurts making breathing difficult at times. My jaw is either numb or it hurts. My which left side has been affected. Neck, stomach, back and hips. I feel like my right side is trying to carry 20lbs worth of left arm. I recently just had a flare up and was out of work for a week and a half. I seriously thought I was dying. I couldn't sleep, walk, talk, could barely eat, constantly dizzy and my head felt like it was going to explode. My arm swelled up so much I thought it was going to explode. My boyfriend kept begging me not to give up, so here I am wondering how i can spread awareness. I can't believe it took me this long to find other people that are tough cookies just like me.
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BioBased (09-13-2015), DejaVu (09-10-2015), Enna70 (09-10-2015), mama mac (09-10-2015), MissyJ (09-11-2015), RSD ME (09-10-2015)

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Old 09-10-2015, 06:28 PM #2
LIT LOVE LIT LOVE is offline
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Are you certain you're safe to be driving? Just something to consider.

Welcome aboard.
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Old 09-10-2015, 06:34 PM #3
Enna70 Enna70 is offline
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Welcome to our little corner.
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Old 09-10-2015, 06:40 PM #4
Amy durka lee Amy durka lee is offline
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Amy durka lee Amy durka lee is offline
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I haven't use the gps in months, but if I know I'm brain scattered my boyfriend drives. I only drive to work and back...10 minutes tops. I'd never put other peoples lifes in danger. And i was ok to drive....just a spacey memory. I don't have seizures...that I know of, so I'm ok.
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Old 09-10-2015, 07:12 PM #5
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Great to have you here!
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Old 09-10-2015, 08:06 PM #6
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Smile Welcome

Hi Amy,
Welcome,

So glad you have a supportive boyfriend.

Sorry you've had such a difficult time.

Warmly,
DejaVu
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Old 09-10-2015, 08:53 PM #7
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Hello and Welcome Amy,

You have landed in a soft place with plenty of support. We all understand how difficult this is. I think we all do it the same way. One day at a time or sometimes just in increments of five minutes.

I am glad that you are getting some testing done. It sounds like you have a lot going on and while it could certainly all be related to CRPS you can't rule out something from your accident as a contributor that could be addressed. I am sure youll be relieved to find out what is causing the lump in your arm. All too often we write new symptoms off as CRPS and that isn't always the case. We have to be careful doctors don't use our diagnosis as a wastebasket into which they can throw all of our problems.

I saw elsewhere that you were reluctant to get treatments and were trying your own (probably more holistic) remedies. I would like to gently encourage you to pursue treatment, starting with the least invasive/offensive options. CRPS outcomes are best when treated early and chronic pain in general develops when there has been an ongoing barrage of pain. Get help from professionals who can address your pain and swelling and start some PT if your tests all come back okay. Gentle movement and range of motion are beneficial. If you don't want to go to pain management, then neurology or Physical medicine and rehabilitation specialists may be an option. A good chiropractor may be worth consulting for musculoskeletal issues related to your accident.

Come and see and let us know how you are doing.
Sending hugs,
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Old 09-10-2015, 09:46 PM #8
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Hi Amy,
I am new also. You have found a great great group of people. In the month That I have been here I have learned so much and felt very welcomed and supported. I wish you luck with your journey and hope to hear more from you~mac
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Old 09-10-2015, 09:57 PM #9
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welcome amy! i am sorry you have rsd but am glad you found this forum. everyone here is so nice and supportive and they have become my best friends. i couldn't get through my days without them. i am always here if you need to talk. soft hugs coming your way.
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Old 09-13-2015, 12:05 AM #10
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Default Is anyone awake right now?

I'm having a terrible flare up and I want to talk to someone who can relate. I've never posted on here because as much as I can relate, I didn't think I had anything to offer to the group. I was diagnosed 4 years ago... And my life has changed completely. Normally, I can handle the pain, but it's really bad tonight.

Kia
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