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 07-27-2015, 08:31 PM #21
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Talking Best day in a while! Thank you Cranial Sacral Massage!

I just wanted to share that I have had a really great day today. My pain level has dropped significantly and I have so much energy (which is not usually the case)!!! I treated myself to a Cranial Sacral Massage on Friday and I honestly feel that some of the energy & better circulation came from that session. After the massage I was in pain but she told me I should start to feel the benefits for a couple of days as my body rebalanced itself & I honestly feel it. Just wondering if anyone has also had success with this?

I kinda don't want to go to sleep because I haven't felt this good in a LONG time!! And sometimes I forget what it is like to have pain stay around a 2-3.
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Old 07-30-2015, 06:21 PM #22
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Today I walked all day without crutches. It was painful, not pretty at all and my left foot thumped along, but it was improvement.
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Old 07-30-2015, 07:31 PM #23
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BB, That is great! Give those armpits a break. Don't overdo it though. You can always use a cane for a while. I found this really helped me a lot when I held it on the "good" side to take the pressure off when all my weight was on the injured side. You can also use just one crutch at the end of the day if your foot really needs a break. You'll get there! Baby steps!
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Old 08-01-2015, 04:41 PM #24
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Drove my car today! First time in 7 months. Also took an honest to goodness bath all by myself.
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Old 08-08-2015, 08:36 AM #25
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Quote:
Originally Posted by whiteaa View Post
Hey guys!

As I've been going through this journey of CRPS, I have at times gotten overwhelmed by how far I have still to go. As a therapist, I am super aware of how important it is to make a note of even the smallest successes and positive experiences. I thought maybe we could all have a place to share the small successes and achieved goals we have with each other. Maybe it could even become a sticky?

Here are mine so far today:
I went on a 15 minute walk and only had significant pain on the downhills.
I walked down the stairs!!! (This is a huge success for me )
I was able to pull my foot up to put my socks on!

What are yours?
Great idea!
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Old 08-08-2015, 08:38 AM #26
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Originally Posted by BioBased View Post
Drove my car today! First time in 7 months. Also took an honest to goodness bath all by myself.
Awesome!! Having not been able to drive in 11 months I understand what a huge accomplishment it is!
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Old 08-08-2015, 08:44 AM #27
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Love this thread!! My success & proud moments are I'm finally being kind to myself & my CRPS. I've changed my relationship with pain & I've stopped holding on for dear life to things that no longer make sense for me. All of these changes were due to an 8 week class in MBSR. I'm proud of myself for taking and I'm proud that I'm still able to rock my humor as a way of coping.

This has changed me but then again we all change regardless of physical diagnosis. I'm taking this opportunity to be an advocate and oddly enough I recently accepted the job as a disability coordinator/counselor at a college. Because I know what it is like to deal with pain, emotional stress, assistive devices & day to day burdens I am loving helping others with accessibility so they also will have the opportunity to follow their dreams.

May everyone have a blessed day
Thank you so much for this post! It was so inspiring!
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Old 08-08-2015, 10:00 AM #28
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Quote:
Originally Posted by whiteaa View Post
Hey guys!

As I've been going through this journey of CRPS, I have at times gotten overwhelmed by how far I have still to go. As a therapist, I am super aware of how important it is to make a note of even the smallest successes and positive experiences. I thought maybe we could all have a place to share the small successes and achieved goals we have with each other. Maybe it could even become a sticky?

Here are mine so far today:
I went on a 15 minute walk and only had significant pain on the downhills.
I walked down the stairs!!! (This is a huge success for me )
I was able to pull my foot up to put my socks on!

What are yours?
Hi everyone! This morning I got on here to.... well basically vent, and ask everyone about any tactics they use to accept RSD, and also having to use any devices like walkers and wheelchairs etc. I am really having a hard time accepting using these things. My Birthday is in two days and that is making me sad knowing that I am relatively young (turning 37), and so dependent on a wheelchair, not to mention my sweetheart of 20 years who is amazingly wonderful and supportive. Also 4 amazingly compassionate children that carry the load for our home (which actually makes me feel very guilty because I do have such an amazing support group in my home and I don't always "count those blessings." I am still very interested in how any of you cope with acceptance of this illness and being dependent on others and a wheelchair or other device. I am sure glad I got on here today (it's been too long) and saw the post about celebrating our accomplishments! So here goes!
1.) I still have kept my sense of humor, and have tried to use it much more lately!
2.) We got rid of our home that we all loved and just moved into a larger, much more open floor plan home that I can get into every room with my wheelchair (except our Florida room that has a step) just for me. Again thanks to my sweet husband. It also has a pool so my hubby (who happens to be a therapist that specializes in recreational and aquatic therapies so I don't have to travel 45 mins, he can do therapy with me here! So that is exciting and makes me feel hopeful. (The pool currently looks like a swamp tehe. We are waiting on the pool people to come and get it usable lol! With that said I'm excited to start aquatic therapy at home. HUGE blessing.
3,) I love to cook. For me it is a way of expressing love to my family. Last year I think I cooked two partial meals (in an entire year) Since moving into this house a month ago I have cooked 10 meals! That is including having a required hysterectomy with an extended hospital stay, and then falling out of my wheelchair onto my stomach onto tile floor 5 days after I got home which landed me back in the hospital for a short stay. BUT I am so happy to be able to cook nice meals for my family!
4.) I have always loved all things homemaking including laundry,(strange I know) but with the help of my children carrying in their hampers and carrying out their clean clothes and putting them away. I am able to get into my large laundry room in my wheelchair and do laundry! Again a huge accomplishment for me!
5.) My church starts at 9:00am and ends at noon. Because I have full body RSD it is hard even with taking my meds at 5am to move at all especially in the mornings. I have missed Church and my church family so much. This past Sunday I was able to go for the first time in 7 months, and I felt up to staying all 3 hours! When I got home my hubby and kiddos made me my favorite meal, and I literally slept the entire day which never happens because pain keeps me an insomniac. That day was just a pure blessing straight from Heavenly Father!
6,) Two days after church I was able to go to a restaurant for brunch celebrating my mom who is also one of my dearest friends birthday. I had a seizure in the restaurant (pseudo seizures caused by RSD), but after getting it together and with the help of loved ones I was able to go to the mall for the first time in a year and school shop for clothes for my children! HUGE accomplishment for me!

FUNNY thing- as I am writing this I'm understanding why I have been throwing pity parties and unable to do much of anything these last few days, I AM EXHAUSTED from all of my accomplishments!! Thanks for the post that has prompted me to think about my accomplishments! It's made me put things in perspective and feel really grateful.
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Old 08-13-2015, 01:09 PM #29
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Whoo hoo today I was able to walk around CVS supported by a shopping cart. This is unbelievable, I could not do this a month ago.
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Old 08-17-2015, 09:32 AM #30
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Just wanted to make a comment in regards to all the awesome progress in this thread and in others. People are making bigtime positive strides, and this thread is about celebrating that. Man that's frickin awesome

The other side of this, is that anytime we push a threshold, it very typically results in a corresponding rough time when pain and depression and resignation all return, sometimes with a vengeance. In my experience this is NORMAL. So whenever things are bad - KNOW that it is a result of your mind and body adjusting to the new norm you're setting by breaking through your old boundaries. There is no such thing as success without trial and tribulation.

I'm not saying hey - just go ahead and overdo it with reckless abandon (not that most of us could do that if we even wanted to anyway) but...

Just try to measure your progress as objectively and detachedly as possible over weeks and months, NOT several days, because it WILL be two steps forward followed by one (and sometimes even two) back. Net gain is The name of the game.

So when Bio kicks @$$ and goes shopping - she gets 1) the satisfaction and excitement of achievement, and 2) added pain from pushing it harder than "normal." The key is in knowing that the delayed onset pain is from pushing the limits, and that it will pass, and that it will yield a new baseline level that is a tiny bit better than before over time.
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