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 02-23-2011, 03:08 AM #1
Cricket183 Cricket183 is offline
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Catra121,
My heart goes out to you. You are so young to be going through this. I was 38 when my symptoms first started. (I'm 43 now.) I remember how very scary it was when I got to the point I could no longer care for myself and had to depend on others for the simplest things like taking a shower and washing my hair or putting on a bra and getting dressed. I was diagnosed in Nov. 2006 after close to two years of symptoms. My RSD/CRPS started in my right arm and shoulder. It was caused when a herniated disc at C4/C5 permanently damaged the C5 nerve root. Initially I was able to continue working. I am a Registered Nurse and worked in Oncology. I loved it!!! Things were difficult but I was able to function for the most part. I went through multiple treatments including having a spinal cord stimulator placed. Then in Jan/Feb 2008 my stim started mimicking my pain rather than interrupting the pain signal. The RSD/CRPS also began spreading to my chest wall, rib cage, left arm and shoulder, neck and eventually my upper back and spine. It also started affecting my internal organs--most notably my stomach and heart. (I'm not suggesting your RSD is spreading--only your doctor can determine that.) By March 2008 I had to leave work and go on full disability. I felt like my whole world was turned upside down. I lost my job and with it an important part of my identity, my independence, my health, and at times it felt like my sanity. Then added to that there was the horrible pain and sleepless nights. (As you can tell by the time of this post I still struggle with the sleepless nights.) I am so glad that your mom is going to be able to help you and that you have what sounds like a loving, supportive family. There is no way I would have made it through all of this without my family. My husband has been unbelievable. We were both use to me taking care of most of the household chores (my choice) and the boys (they are 20 and 21 now and still live at home--one is in college and the other is chronically ill). Then all of the sudden not only was my husband caring for me and working full-time but he was cooking, cleaning and handling all the boys activities. He has never once complained. He takes it all in stride.
I really think you are on the right track as far as meeting with the new pain mgt doctor and getting to know him and establishing a some goals. I am also glad that you went to the family get together. It's so hard for me to get out and do things sometimes because I know that I am going to pay for it with increased pain and fatigue for days afterward but it is so important for my physical and mental health. I try to get out at least once a week and go do something. It doesn't always work but I try. Weather permitting I also try to go outside for at least 15-30 minutes a day just so I am not staring at the same 4 walls all the time. I am also trying to find some new hobbies which is really proving to be quite a challenge because so many things require the use of your hands/arms and I have very little strength left in my hands (not to mention the increased pain activity causes). I admire your positive attitude and courage. I did not intend for this to be a "novel" just a note to let you know you are not alone and to stay strong.
Cricket
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catra121 (02-23-2011)
Old 02-23-2011, 03:00 PM #2
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Thanks for sharing your story Cricket. It really helps to hear everyone's stories and that's what helps keep me focused on getting better. I'll never be like I was...but I focus on that I WILL get better. And I feel so blessed by all those around me who keep me strong and who make me feel normal while still helping me through. This has been a very rough 4 weeks since these NEW symptoms popped up and it really makes me think that no matter how bad things are...they can ALWAYS get worse so you need to cherish all the small things while you have them.

One of my cross stitch friends gifted me a chart called small miracles and I can't wait to start it because it reminds me of how important it is cherish the small things.

Thanks again for your reply. It really touched me.
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