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 03-01-2011, 12:15 PM #21
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Originally Posted by Imahotep View Post
I applaud those who can continue their lives with this thing. I do know how difficult it is to deal with the disease and a normal life.

But there are many things you just can't do any longer or become chores. I had trouble just putting on my work shoes or peeling an orange. Now I buy oranges in a bottle.

Everyone has to adapt and part of adapting is finding things to take the place of what was lost. I doubt this is an easy process for anyone but it's something we all need to do to the best of our ability.

We must laugh in the face of terror. During the blitz of London in WW II people got used to be bombed everyday. They'd picked themselves up and dust off and then go back to carrying on with their lives. The major difference is we have to dust ourselves off just right or we'll be in more pain.

AND if I may add..our negatives must somehow be replaced now by our positives in our lives..It is very easy and (we most certainly deserve this..don't get me wrong) to get swallowed up in our new life of pain and ugly..no answers..our hands are full just getting thru our days.. but what little energy we have in reserve we must use to find a happy spot in our hearts..Because in the long run..when we turn that light out at night next to our bed...what did we gain if we just felt blah about ourselves and our lives now...?? I was a tennis instructor for many years..it allowed me to afford my college bills plus I got to play and teach the sport I loved... now I will not, Iam sure of this... I will never pick up my tennis racquet again or at least play competively anymore..but I've grown to understand and accept that cuz I/we have to accept where Iam now with my life and the positive is..I can still smile and give love and receive it back..and that warms my heart. I will always have my fond memories of my tennis days and students..and now it's about the ... Free and simple (wink)....It's out of our hands... we have to loosen our grip on our old life and accept the new...and somehow be appreciative we are still here to enjoy life and our loved ones in it...We need to afford that smile and laugh when ever we can...

Hugz, Kathy
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Imahotep (03-01-2011)

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Old 03-01-2011, 12:27 PM #22
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Originally Posted by CZZ74 View Post
Me too Danielle, I feel the same way- hitting year 8. Pain is worse than ever.
Lots of fear anxiety talking to myself all day because of sleep deprivation.
I too sleep only 2-3 hours. It is dreadful.
I am at a loss as far as advice., Just wanted you to know that you are not alone.
It does look like you have received good suggestions. I believe I will try them as well.
.I am so sorry for your pain.
Sleep is so important and can be so hard to get.

I mostly need zanaflex but I also take seroquel to get sleepy. A few medications seem to make me sleepy so I take those at night and some seem to keep me awake and I take those in the morning. Talk to your doc before changing but almost every time they won't care. I try to ask them in advance if it matters now but often forget.

As needed meds for sleep can be a godsend. Anxiety, pain, worry, and other things like a racing mind can keep me awake and sometimes I need something to target those specific problems.

Best wishes.
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Old 03-02-2011, 01:49 AM #23
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Sorry for my late reply. My life is mad right now. I had to drive 7 hours yesterday for an apt and am going on little sleep. I won't go back tonight to sleep I can tell too. Busy days for me equal even less sleep since my body gets activated more with pain.

I am sorry so many can relate.

Ali I did a pain clinic like you are describing. Well I actually only did 4 days of it at Cleveland Clinic cause the activity part was too much for me. I will say the therapy part was beneficial. It helped to see how others coped and felt with pain. Group therapy helps me more then individual that is for sure. I always say you can know something mentally but to feel it is a different story.

I have felt in my life that people with positive outlooks do get farther. I hear others on here even who have such amazing outlooks when they say they are blessed etc. I am in ahhh. I think a major point that was stressed here is how important is to find healthy outlets and things we can do. Even if we can distract for 10 minutes it can help break up the mental stress this causes.

Sending pain and worry free thoughts to all
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Old 03-02-2011, 07:53 AM #24
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I also got a puppy that makes me laugh and smile when i have a rough day
There is no psychiatrist in the world like a puppy licking your face.” – Ben Williams

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All opinions expressed are my own. For medical advice/opinion, consult your doctor.
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