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 09-30-2013, 10:24 AM #11
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Default lose yourself in music :)

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Initially the exercises will probably seem a little repetitive if you haven't played before, but try to see them as a kind of physio for your pain - I still do scales and arpeggios as finger/hand exercises, and that repetition allows you to lose yourself in them. I find that brilliant pain relief.

Let me know how you get on with your first lesson - it'll be great to hear your reaction to it! I hope you fall in love and lose your heart a little to it...
Bram,

Thank you!! I took a few lessons when I was around 8 yo. I loved it back then and since have always been drawn to them. So when I was trying to find things I could do to keep my sanity during the winter months and my mind occupied.. I thought of how wonderful it would be to learn to play. My only worry is how long I could tolerate sitting to actually play. My hope is that I will lose myself enough in it that I won't think about the pain

Amazing that you taught yourself!!! You must be one smart lady

I love that you named your Cello "Edward" that is funny! Oh have fun at your lesson and do let me know how it goes.

I think it is really important with this disease to find or create new passions so that depression and self worth doesn't get a chance to take hold! I truly appreciate all who take the time to respond. Shoot, it helps us learn a few things about each other.. a bonus!

My other goal this winter is to learn sign language (Vrae inspired). I really think that will be great therapy and who knows someday it could become quite useful.

Have a fantastic day Bram,
Tessa
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Old 09-30-2013, 11:43 AM #12
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Hello all,

I wanted to ask everyone about things they have found helpful in managing pain on a daily basis. I'm not asking about medications or therapeutic remedies offered by our doctors or PM's; what I am really asking about is what have you found helpful in your own journey to fight back the pain & promote mental health? I thought maybe this might be helpful for all of us in case there are things we just hadn't thought about.

I'll start it off by offering what is helpful to me: Upbeat music while riding my indoor recumbent for exercise.. my current favorite station on Pandora is "Athleta Power to the she" during my ride.

Next up..
My little Toto (a Yorky with 2 in. Long legs) follows me like a lamb from room to room. She's 10 yrs old & loves me & I even feel like she feels sorrow for me when I'm I'm feeling bad. My cat loves me too but takes a second seat to the
"Dog." Toto thinks she's human & chases "Emily" away! Lol.
My other savior is Lidoderm patches. You have to ask your Doc. For them. They are the only patches that I could tolerate. They feel a little cool ( eeeuw)
When you first put them on (for 3days) but really help pain or coldness.
I also I use electric pads under my body in bed & electric blanket on top under my spread.
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Old 09-30-2013, 12:16 PM #13
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Well, I am not as exciting as you guys are. We do not have any pets, nor can I play any instrument What helps me is watching TV, it is my escape from reality. What also helps is coming here I love my iPad and will play some games on it when my hands will allow.
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Old 09-30-2013, 12:56 PM #14
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My little Toto (a Yorky with 2 in. Long legs) follows me like a lamb from room to room. She's 10 yrs old & loves me & I even feel like she feels sorrow for me when I'm I'm feeling bad. My cat loves me too but takes a second seat to the
"Dog." Toto thinks she's human & chases "Emily" away! Lol.
My other savior is Lidoderm patches. You have to ask your Doc. For them. They are the only patches that I could tolerate. They feel a little cool ( eeeuw)
When you first put them on (for 3days) but really help pain or coldness.
I also I use electric pads under my body in bed & electric blanket on top under my spread.
Thank you for sharing!! Glad you have your little lamb following you about Our furry friends really do impact our lives in positive ways.

And the Lidoderm - yes, that helps me too but I am realizing more and more that the the things that help me the most doctors cannot provide. No medication or treatment can help me when I am feeling worthless or sad that all comes from things in and around my life. Even just 5 min of joy/pleasure a day does wonders for the spirit!

My daily goal is to find something new to bring me joy so that the things I can longer do don't bring tears to my eyes, and the new joys remind me that I am a survivor!
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Old 09-30-2013, 12:58 PM #15
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Well, I am not as exciting as you guys are. We do not have any pets, nor can I play any instrument What helps me is watching TV, it is my escape from reality. What also helps is coming here I love my iPad and will play some games on it when my hands will allow.
lol Nanc.. I can't play an instrument either but I'm sure gonna try. Heck my husband sings me awake in the morning and even though I love it, it can be rather annoying.. so now I intend to make music for him haha maybe we will start a band!

What is your favorite show? You know you can learn an instrument on the iPad
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Old 09-30-2013, 01:18 PM #16
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lol Nanc.. I can't play an instrument either but I'm sure gonna try. Heck my husband sings me awake in the morning and even though I love it, it can be rather annoying.. so now I intend to make music for him haha maybe we will start a band!

What is your favorite show? You know you can learn an instrument on the iPad
you are too funny Tessa! Let me know when your new album drops Seriously though, I think it is great that you are going to take piano lessons. I got the garage band app on my iPad...really got it for my husband. My hands hurt too much to do much with it myself. I used to draw and scrapbook, can't do either anymore

I have so many "favorite" shows. True Blood, Revenge, Scandal, Grey's Anatomy, How I Met Your Mother, Big Bang Theory...it goes on...I love a good comedy!
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Old 09-30-2013, 01:51 PM #17
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Big Bang Theory!!!!! Grays Anatomy!!!! How I Met Your Mother!!!!! YAY!!!!!

Go Nanc! I love those shows. E4 is on a LOT in my house!

You can't beat a bit of escapism......like a good film does that too. I love Lost In Translation with Bill Murray, it's set in Japan, and it really is like a different world. Plus it's about 3 hours long lol

Bram.
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Old 09-30-2013, 02:31 PM #18
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Big Bang Theory!!!!! Grays Anatomy!!!! How I Met Your Mother!!!!! YAY!!!!!

Go Nanc! I love those shows. E4 is on a LOT in my house!

You can't beat a bit of escapism......like a good film does that too. I love Lost In Translation with Bill Murray, it's set in Japan, and it really is like a different world. Plus it's about 3 hours long lol

Bram.
Big Bang Theory is the best!!! So sad that this is the last season for How I Met Your Mother...but at least we will finally meet your mother!!

I have not seen that movie, not sure why. I have seen it on the movie channels lately. I will have to watch it...I like Bill Murray. There are my favorite movies that keep coming on and my husband can't believe that I keep watching them...Return to Me, Fools Rush In, A Walk in the Clouds....
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Old 09-30-2013, 02:44 PM #19
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Thank you for sharing!! Glad you have your little lamb following you about Our furry friends really do impact our lives in positive ways.

And the Lidoderm - yes, that helps me too but I am realizing more and more that the the things that help me the most doctors cannot provide. No medication or treatment can help me when I am feeling worthless or sad that all comes from things in and around my life. Even just 5 min of joy/pleasure a day does wonders for the spirit!

My daily goal is to find something new to bring me joy so that the things I can longer do don't bring tears to my eyes, and the new joys remind me that I am a survivor!
Tessa, YOU ARE SO NOT WORTHLESS. Please don't feel that way. It sounds like you have a wonderful husband and two great furry kids in your life. And you are such a caring and supportive person. And you are a survivor, because you manage to keep going and keep a sense of humor in spite of all you're going through. So I hope you don't ever feel like that again. I know it's hard, I've felt that way myself too at times, but I'm trying to focus on the positive things like you told me you try to do. You are very special and don't ever forgot it lady! Hope you have a great day my friend.
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Old 09-30-2013, 06:56 PM #20
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Tessa, YOU ARE SO NOT WORTHLESS. Please don't feel that way. It sounds like you have a wonderful husband and two great furry kids in your life. And you are such a caring and supportive person. And you are a survivor, because you manage to keep going and keep a sense of humor in spite of all you're going through. So I hope you don't ever feel like that again. I know it's hard, I've felt that way myself too at times, but I'm trying to focus on the positive things like you told me you try to do. You are very special and don't ever forgot it lady! Hope you have a great day my friend.
Thank you RSD Renee - I appreciate the kind words. Personally I think we all suffer from this feeling off and on.. who wouldn't when after living a normal life suddenly we face great difficulties in doing even the simplest tasks. It is okay to have sorrow for what once was, as long as you don't "stay there" so this is where my goals and aspirations come in to play. Trying to create and reach new goals even though they are far different from the kind of goals I had before. Look up, move forward and reach out.. my motto!

I will try not to feel that way again.. but if I do I promise to remember and think about the encouragement you have given me today, YOUR KINDNESS is very much taken to heart. I'm so glad you joined this group - it is obvious you truly care about others!

Big hugs back.. ah ha this is the best kind of HUG... they don't even hurt YIPPEE for iHugs.. they rock
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