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 06-23-2015, 10:36 AM #1
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Teeth Success Stories

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?
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Old 06-23-2015, 01:52 PM #2
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I love this idea and congrats on the accomplishments! A Sticky about progress sounds wondermous.

It IS very easy to get bogged down. My journey has been made easier by giving myself points for the tiniest little things. Ie: starting the exercise bike at two minutes and then going to three. woo-hoo! Ya gotta start somewhere. Altering one's expectations to fit the illness can decrease a lot of grief!

recent accomplishments...

Getting through two airports last week without assistive devices.
Taking the extra cushion out of my shoe and putting the regular insert back in!
Being able to go without compression on my affected leg.
Walking two miles in one shot on a good day.
Standing for 15 minutes talking to a neighbor without my foot stinging.
Successfully Decreasing my medication dose.

This has taken about a year since CRPS began. Go for the long view...
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Old 06-25-2015, 06:30 PM #3
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Thumbs up

Today I recognized when my pain started to turn into stress leading to more pain, stopped, took deep breaths, and kept my pain from controlling my mind.


What are your successes today guys?
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Old 06-25-2015, 09:57 PM #4
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Although I am a bit flared up from re-trying an exercise that bothered my ankle before (guess what, still does!) the flare is a lot less severe than in the past. I am not having as much discoloration or pins and needles as I used to have when flaring.

Thanks Ketamine Doctor Man!

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Old 06-30-2015, 06:12 PM #5
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I am trying something new, completely unrelated to CRPS and using a different part of my body. Too often my thoughts run to foot, foot, foot. I am like a broken record. So I started piano lessons last week. I am taking my son to the music school anyway and they had a slot open at the same time. Hard to make excuses on that one.

I like that it gets me into a totally new place in my head, where I am focusing intensely on my hands and reading the notes. It also re-connects me to a time in my brain before CRPS since I took piano for a while when I was very young.

Yeah for new, non-pain brain activity!
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Old 06-30-2015, 10:23 PM #6
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Teeth

Quote:
Originally Posted by Littlepaw View Post
I am trying something new, completely unrelated to CRPS and using a different part of my body. Too often my thoughts run to foot, foot, foot. I am like a broken record. So I started piano lessons last week. I am taking my son to the music school anyway and they had a slot open at the same time. Hard to make excuses on that one.

I like that it gets me into a totally new place in my head, where I am focusing intensely on my hands and reading the notes. It also re-connects me to a time in my brain before CRPS since I took piano for a while when I was very young.

Yeah for new, non-pain brain activity!
That's amazing!!! It's so great to have activities that can give us a little vacation from our pain. I'm so happy for you!
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Old 07-06-2015, 03:50 PM #7
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Quote:
Originally Posted by Littlepaw View Post
I am trying something new, completely unrelated to CRPS and using a different part of my body. Too often my thoughts run to foot, foot, foot. I am like a broken record. So I started piano lessons last week. I am taking my son to the music school anyway and they had a slot open at the same time. Hard to make excuses on that one.

I like that it gets me into a totally new place in my head, where I am focusing intensely on my hands and reading the notes. It also re-connects me to a time in my brain before CRPS since I took piano for a while when I was very young.

Yeah for new, non-pain brain activity!
Good for you! It does help to have something else to totally take my focus. I have a keyboard, and sing along while playing. hahaha Making a joyful noise. I have had RSD in my left foot for six months and am just now being able to put it on the floor for any length of time, so I can play my keyboard and sing again. Glad you brought this up, as it is encouraging me to do it a little bit at a time every day. Progress of any kind encourages me to keep on keepin on.
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Old 08-08-2015, 08:36 AM #8
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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, 10:00 AM #9
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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 #10
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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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