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 12-04-2016, 06:22 PM #1
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Default Pain App

I hope all of you are well and having days with less pain. I wanted to talk to y'all about an app my brother is designing, name exactly that: Les Pain. The idea of the app is for it to be a companion for people like us that fight chronic pain daily. We submitted the vision for it to a start up competition and I am proud to say it was ACCEPTED as one of 8 finalists for a grand prize of $20,000 to help with the building of it. The plan is to work on making Les Pain better and release it as soon as this Spring. Here is some more about to help you understand better:

"While our solution is not a cure-all for chronic pain, we believe it can help patients in their fight to not lose as little function as possible. Our solution is an integrative and dynamic tool to monitor and improve outcomes of chronic pain patients through provider and community network. The app idea we came up with, Les Pain, is designed to do exactly this via increased data-driven compliance with a drug called exercise. Exercise is medicine that can prevent and treat chronic pain. Increased physical activity not only helps patients strengthen muscles but also helps the body make natural painkillers, endorphins. It may not seem like a big deal at first but it is challenging for chronic pain patients to keep up with their physical therapy as it is very easy to lose motivation and hope. Les Pain is designed to track and store the patient's daily pain level along with encouraging them to perform daily exercises. Patients and physicians will have access to all of this data and we hope it ultimately shows the patient that increased physical activity will not only lead to increased function but also decreased pain. Our solution hopes to overcome the challenges faced by many health apps, namely keeping users engaged. We anticipate building a user friendly interface where patients are encouraged to “level up” by performing their daily activities and recommendations. There will also be a community portion where patients can anonymously message each other and “like” each other’s achievements. Sometimes pain patients are the only ones that can relate with each other. The social network aspect is a way we can get greater patient engagement."

So to put it simply, our app will be more than a pain diary. You will be able to record your physical activity, track/rate your pain in a way more sophiscated than the normal pain scale out of 10, and see what you did on the days you fared better than usual and really understand it through data and charts. The question then becomes 'why am I telling this to you?' Well, it's pretty simple. I want YOUR opinions on what can make this idea better. What features would you like to see added that would get you to use something like this? There are no wrong or right answers and please be as honest as possible. The more feedback there is, the greater it will be. Thank you for your time!
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Old 12-04-2016, 07:34 PM #2
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Hi NYM,

It is great to hear from you and it seems pain isn't keeping you from creating and consulting. How exciting! The app sounds fantastic.

As some of you know I have been dedicated to exercising however possible since the beginning of these foot shenanigans. Initially that meant 2-3 minutes on an exercise bike and a little swishing around in the pool. I was still on crutches for months. Now I can bike or swim 30 minutes and can not only walk but actually run over a mile. It took over two years of solid work. Getting to this point required micro-management of my routine and endlessly writing in a calendar to try to understand advances and setbacks.

An app that could track that and give data for both exercise and pain in chart form would be very helpful. I've tried exercise apps but they either don't have enough variety in the types of exercise (many lack swimming) or don't have a good way to write notes about the workout. AND tracking pain that way would require going back through everything. That's why I'm still with the calendar.

It might be nice if there was a way to put an asterisk or flag certain days, let's say you noticed something unusual that day - a new pain or you just had a great workout and wanted to draw attention to it. I sometimes have to trawl back through my calendar to find this sort of info.

The social networking aspect sounds great too. It's difficult to get regular people excited about the fact that you are now biking 5 minutes and walking for 10. Woo-hoo! Go strong!

Thanks for involving us on this. I hope this great idea continues to get the recognition it deserves.
Take care,
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Old 12-05-2016, 06:16 AM #3
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I still have no smartphone. I know. I'm ancient. LOL!
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 12-07-2016, 11:46 PM #4
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Quote:
Originally Posted by Littlepaw View Post
Hi NYM,

It is great to hear from you and it seems pain isn't keeping you from creating and consulting. How exciting! The app sounds fantastic.

As some of you know I have been dedicated to exercising however possible since the beginning of these foot shenanigans. Initially that meant 2-3 minutes on an exercise bike and a little swishing around in the pool. I was still on crutches for months. Now I can bike or swim 30 minutes and can not only walk but actually run over a mile. It took over two years of solid work. Getting to this point required micro-management of my routine and endlessly writing in a calendar to try to understand advances and setbacks.

An app that could track that and give data for both exercise and pain in chart form would be very helpful. I've tried exercise apps but they either don't have enough variety in the types of exercise (many lack swimming) or don't have a good way to write notes about the workout. AND tracking pain that way would require going back through everything. That's why I'm still with the calendar.

It might be nice if there was a way to put an asterisk or flag certain days, let's say you noticed something unusual that day - a new pain or you just had a great workout and wanted to draw attention to it. I sometimes have to trawl back through my calendar to find this sort of info.

The social networking aspect sounds great too. It's difficult to get regular people excited about the fact that you are now biking 5 minutes and walking for 10. Woo-hoo! Go strong!

Thanks for involving us on this. I hope this great idea continues to get the recognition it deserves.
Take care,
Thank you for the terrific feedback! I have noted some of the things you mentioned like the days with an asterisk because it happens to me all the time. And yes, many exercise apps don't have swimming as a option for some reason. Our goal is to get you off the calendar and using the app so we'll work on that! Normal folks definitely don't get as excited as we do about the little things and that's part of the reason why I feel we need to be our own subset or group in the market, chronic pain or otherwise. It's my pleasure to involve you in this, I'd love to continue that more. Everyone else please tell me what you think
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Old 12-10-2016, 07:49 AM #5
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I think this is a great idea! When things got really bad a few years ago and I had SO many symptoms and problems...I had to keep a daily journal and that really helped me to identify triggers based on what activities I did, what I ate, etc. An app that could help keep track of pain levels and activities would be amazing. I also did at home PT and had daily exercises to do...so I made a good old fashioned chart where I could check off the exercises I did each day as I completed them (I could only do one at a time with at least 30 minutes to an hour of rest between)...so it was a good way to make sure I completed the list each day or if I wasn't able to, because of the pain, it was a good way to know I had accomplished SOMETHING and what I could handle. I don't know what all would be included on that app...or if there would be a way to imput personal goals or exercises/activities that could be marked off as completed...but that would have been very helpful to me. I know I felt like every check mark on my chart was a little win to celebrate and it kept me feeling like I was accomplishing something even when the improvements were very small from day to day.
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Old 12-10-2016, 01:02 PM #6
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Not to hijack, but I use My Pain Diary - its free I think- to track pain levels and activites and what I did differently etc. It isn't what this app would be. But it is something useful, and I can print it out and give it to my dr. etc.
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Old 12-18-2016, 06:02 PM #7
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Thanks catra and Becca!
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Old 01-18-2017, 01:12 PM #8
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Default Pain app suggestions to NYM

Hi NYMets-
I use protect-o-meter for iPad. It's not compatible with anything else which is a big downside. It's focus is all the other things in life and there isn't a place for exercise - if you have a chance to put some options on your app for other contributors to pain and even ways to lessen pain it would be terrific.

I have to hand journal the little coups of doing a load of laundry and each exercise from PT separately because it doesn't have a place for that.
It does let me look at the past month with a graph, but the graph isn't that easy to understand.
Thanks- I'm glad this will be available soon! Congratulations
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Old 01-19-2017, 09:33 AM #9
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Congratulation New York Mets! So happy for you.
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Old 02-18-2017, 10:40 PM #10
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Thanks Hotfoot and RSDMe. We're definitely have to get you using the app instead of writing down stuff like doing the laundry in a journal. I appreciate all the suggestions as it helps a lot. **

Last edited by Chemar; 02-26-2017 at 06:59 PM. Reason: **NeuroTalk Guidelines Terms of Use
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