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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 :D) I was able to pull my foot up to put my socks on! What are yours? |
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. :eek: 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... :grouphug: |
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? |
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! :grouphug: |
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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Okay this may not sound like much but it's the little things right? So for two summers the toenail of my big toe has been turning deep blue when I put my foot down for too long (sometimes 5 minutes). I have used that as a barometer for how rotten my circulation was and indicator to elevate since it almost always started to hurt after turning blue. Between that and not wanting to draw attention to my discolored foot I have not painted my toenails once. Until a couple of days ago. Now they are a searing hot pink. :D
Circulation is improving enough my barometer looks normal most of the time. It is fun to have happy looking toenails. A little normalcy goes a long way. Thanks again Ketamine Doctor Man! |
So glad to hear your ketamine is going well, Littlepaw!
Here's mine: I got an elliptical the other day and since it is as close to zero impact on my knee as I can get it has been helping so much! I actually got to work out to the point of sweating!!!!!! |
That is so good to hear! Sweating takes work! kudos on the new exercise. The more normal sensory input our nerves can get to interpret the better. It helps reset the whole paradigm. I started a ballet/Pilates/cardio kind of thing this week. I was afraid my foot would blow up after doing it but it didn't. It feels like it is increasing flexibility in the ankle. We gotta keep trying new things! No way I could've done that 6 months ago.
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Hello Tiger Lily,
Congrats on getting the foot on the floor. That iS an accomplishment. Took me a long time on that one. It does get better little by little. Welcome to the forum! I did not see an introduction from you. If you feel inclined just put one in the General RSD forum. It will be seen most easily there. This is a wonderful place for sharing and support. Sending hugs, :hug: |
1) My pain was down yesterday...almost all day. I had about an hour of the side of my foot being crushed and then...just a tingle and an ache. :trampoline:
2) Last night I discovered my SSDI was approved. Back pay deposited this morning. Which means....I get to keep my house!!!:party dollar: 3) My son, d-i-l and grandbabies are for sure coming the end of August. :Heart: 4) I found out my new s-i-l is enlisting in the Army. They are selling the house in CO and my oldest daughter will be moving in with me until he has a station assignment. :yahoo: Great job everyone!!!! :highfive: That's all I have... |
Two months ago, I had an abnormal time in discriminating between left and right limbs. Today, I had a normal time!!
Also, I had a nerve block in my right arm over a month ago and I haven't had a flare in 2 weeks. It's almost like I have a normal hand. :winky: |
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I added box squats to my physical therapy yesterday!!! :D |
Yay! I love this thread, but I feel like my son's been "stuck" ever since the emg. He flared for about five days, it was scary and awful (like what the hec was I thinking, what have I done?) Things calmed back down to normal, but he hasn't progressed since then.
But today, we picked up his custom fit orthotic shoe inserts. (He's flat footed, so I asked the ortho for a script for them, hoping it would help more than the over-the-counter inserts he's been using. I had to ask twice, but we got it!) Turns out that his ankle over-pronates, causing the arch to fall, and puts extra pressure on the damaged nerve. So, when he tried them out today, he got this big smile on his face that just melted my heart. The pain was less with the new inserts! He's excited to see if he can start doing a little more now. Yay! Oh yeah, happy dance! Bonus: Insurance even covered it, which is awesome, since they're rather expensive. That calls for a second happy dance (and maybe some chocolate!) |
I went to the grocery store and bought stuff all by myself instead of having them delivered!!!
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Success!
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 :grouphug: |
Today I accepted without judgment that sometimes I need help with things and hired movers to help me move furniture from old home to new home. It feels so freeing to let myself get help when I need it :D
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I took a shower today! okay guys I promise I have been really clean the last two years. :D But since the whole CRPS debacle my foot was turning red and stinging in the shower. Something about warm water and being down. Today I just didn't want to lolly gag around in the tub as usual so I showered and it worked. Was it because I just got out of cool water? Was it the ketamine? Can I repeat it? I don't know....I was just happy to have a normal colored foot in there.
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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. :p |
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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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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Drove my car today! First time in 7 months. :cool: Also took an honest to goodness bath all by myself.
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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. :) |
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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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. |
Yesterday I managed to walk through 4 stores pushing a carriage. And yes it hit me hard later in the day. I fell into a coma at 5pm from exhaustion. Today I had cold burning pain on my right calf, but I am not giving in to it.
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On Sat. and Mon. I was lucky enough to use my friend's pool. I walked and marched in it for over an hour both days. I even walked backwards! It was a joy to walk normally, with minimal pain. I kept to the shallow end for more weightbearing benefit.
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Roller Blading!!
Okay, I know I haven't been on here for a while. I needed to step back and focus on other things besides my son's CRPS and let my heart do some healing. But I just have to tell you all this. About a week ago, he discovered that he can rollerblade and tolerate it pretty well for about a half hour or so at a time. This is HUGE! There's something about the heel-to-toe motion of walking that triggers pain on top of his foot. That motion is avoided in blading. Perhaps that are is where the nerve damage is, I don't know. The doctors can't figure it out because CRPS is not usually a pinpointed area like that. Ultrasound showed nothing abnormal along the nerves.
This break-through came shortly after his ortho surgeon said that if he doesn't start bulking up muscle soon, it's going to become permanently weaker than the other leg. This really gives him a great opportunity to strengthen that calf, ankle and foot. I'm so excited. I bawled for joy the first several times he rollerbladed. I've never cried so much in one year in my life. |
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Been too long since we had success post!
I have noticed in the last few days that I can leave my foot down while practicing piano. Previously I would cross my leg in the 'figure 4 position' so my ankle was resting on the opposite knee. Otherwise it would sting and go purply. Lately I have been so focused on what I'm doing with my hands that I wouldn't realize till later that I had my foot down the whole time! I have looked at it to check in and it has looked pretty good! Don't know if this will last or is new normal but it sure is nice. I think the ketamine/scar treatment combo is helping but I also think having something other than my foot that requires intense concentration is helping retrain some of my "footcentric" perspective. |
Hello y'all. I'm fairly new to all of this being diagnosed at the end of August. I do suffer with nerve pain in my foot and parts throughout my body. My foot still swells and hurts where I had surgery on top of some other issues I complain of
All of y'all make me look like my issues are very minimal to what y'all are dealing with and I feel guilty about complaining. I can still walk short distances. Most night I don't have sleep problems. My nerve pain thanks to meds and ketamine and nerve block. Are not as bad. But my heart goes to each and everyone of y'all. If I ever do get to the stages some of y'all are in. I will hold my head high and push forward just because of y'all courage. Thank y'all and God bless Sent from my iPhone using Tapatalk |
Been a long time in between success stories so I figured I'd post one. :)
Around 3 Christmases ago I rewarded myself for making progress and went to my first movie post RSD diagnosis. Sure I had to sit in the very back row so I didn't distract anyone else with my constant shuffling around and foot tapping, along with the sweat pouring off my affected limb onto the floor. And the movie wasn't that great either. (World War Z. I somehow didn't know it was going to be a zombie movie going in.) But as painful as it was, it was liberating! Next week I am going to see my first movie since that time, symptom free! |
OMG, symptom free movies! That is a success. :)
Today, I joined a group of friends for a 2 hour holiday lunch at a restaurant with minimal discomfort and very little foot propping. There was quite a bit of laughter and cutting up. Last year I went to a neighbor's house for dinner and was near whimpering the whole time. What a difference! After Christmas we are going to see the Blue Men. Yeah silliness! This will be at a venue for 2500 with walking and standing in line. I am confident that I will be okay. Even if I have some payback, it ain't what it used to be. :hug: |
My son's surgery to remove the 10 pieces of hardware in his ankle was a little over two months ago. He wanted it out for a long time, even after the doctor told him it could make him worse, because the hardware caused a grinding pain when he moved his foot, particularly side to side. His foot also made a lot of popping and cracking noises with every movement. Now with the hardware out, the grinding side to side pain is GONE! as well as the cracking and popping. :D Once he gets past the setback caused by the actual surgery, I'm confident he'll have a much fuller recovery! Also we installed a home therapy pool to make it easier for him to rehab, which is pretty fun!
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Not so much a personal success story as a applause for the nurses who helped me get through the after effects of my cerebral angiogram. They did everything to make me comfortable-one nurse catered to me all night to get me through the agonizing pain I was in.
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