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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)

Any teens with RSD/CRPS?

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Unread 04-07-2012, 10:08 PM   #1
whereisfunkytown
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Cool Smirk Any teens with RSD/CRPS?

Hi,

I'm doing an assignment for school and my case study is a 15 year old with CRPS in both legs: symptoms include super-sensitivity to noise (has trouble hearing speaker in class/hall), social isolation due to fear of being stepped on/touched during class change & lunch (waits til rush has cleared to move from class to class, eats in the hallway), and anxiety in class (answers questions with "I don't know" before even considering them because the lack of concentration makes him insecure about his learning, doesn't raise hand to offer ideas, doesn't participate in group discussion).

My questions to you (or your teen) are, what helps you focus in class?
What has helped you to communicate in class/about class material?
Are there any strategies/activities that help? (with anxiety, memory, participation)
And ANYTHING else you'd like to tell me about being a teen, having CRPS and learning would be wonderful!
I have CRPS, and am a student too, but I'm 37 so my struggles will be both the same and different than yours and I'm really interested in what you have to say.

Feel free to write here, or PM me. And warm thoughts...

Alice
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Unread 04-08-2012, 08:49 AM   #2
debbiehub
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I would highly recommend an inpatient program for children. They get excellent results. I can put you in touch with someone who's son did great and is now back on his football team!

Debbie
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Unread 04-08-2012, 01:29 PM   #3
whereisfunkytown
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I would highly recommend an inpatient program for children. They get excellent results. I can put you in touch with someone who's son did great and is now back on his football team!

Debbie
Thanks for the advice Debbie. Inpatient programs are wonderful: I've benefited myself.
But for this case, I specifically need school/learning-related info. ie. anything OTs give to help focus in class and in school, adaptations/modifications, activities, methods given to help students regain social activity/self-esteem and ways to navigate the school/coursework while in pain. It's for a project (due Tuesday - eeeek)

For example, at my school I write exams in a private room, wear headphones to block out noise when trying to read/write, am allowed to be late and take breaks without negative consequences. But I haven't been given anything to help me move forward, and that's what I am looking for.
Anything that OTs, teachers, etc have done to help kids w/CRPS learn/succeed (academically & socially) is what I'm looking for.

Please help this RSD laden girl finish school
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Unread 04-14-2012, 06:28 PM   #4
nikmcjo
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Quote:
Originally Posted by whereisfunkytown View Post
Hi,

I'm doing an assignment for school and my case study is a 15 year old with CRPS in both legs: symptoms include super-sensitivity to noise (has trouble hearing speaker in class/hall), social isolation due to fear of being stepped on/touched during class change & lunch (waits til rush has cleared to move from class to class, eats in the hallway), and anxiety in class (answers questions with "I don't know" before even considering them because the lack of concentration makes him insecure about his learning, doesn't raise hand to offer ideas, doesn't participate in group discussion).

My questions to you (or your teen) are, what helps you focus in class?
What has helped you to communicate in class/about class material?
Are there any strategies/activities that help? (with anxiety, memory, participation)
And ANYTHING else you'd like to tell me about being a teen, having CRPS and learning would be wonderful!
I have CRPS, and am a student too, but I'm 37 so my struggles will be both the same and different than yours and I'm really interested in what you have to say.

Feel free to write here, or PM me. And warm thoughts...

Alice
Hey! I'll admit, I'm 20, so I'm not really a "teen." However, I've had RSD since I was 15, so I may be able to help from a high school and college perspective. Since you're 37, my college student perspective may help some!



What helps you focus in class?:
For the classes where I really like the professor, I don't have a problem per se with focusing. However, on days where I'm really flaring up, I have a migraine from pain or neck problems, etc., I have a few things I do.
- Medication
I know all of my medications and how the affect me. If it's a medication that makes me a little loopy or feel like I'm "high," I take those at night so that the effects wear off a bit by the time my classes start the next morning. If it's a last minute flare where I can't really prepare ahead of time, I either manage through it somehow or take a pain medication that does somewhat affect my thinking, but not enough to interfere with my school work. I really try not to miss my classes now - as opposed to high school - because if I miss a class, I miss a whole chapter and I am quite far behind as a result. I'm sorry, I know that my response to this part isn't really helpful :/ The best I can say is to just be knowledgeable about your medications, your abilities, and keep an open line of communication between yourself and your professor(s). Thankfully, I'm at a small school and really know all of my professors well.


What has helped you to communicate in class/about class material?:
I'm not really sure about what your asking in this question, but I'll answer how I think I should answer...

I make sure to keep a close line of communication with my professors and my classmates. I'll admit, I don't tell everyone about my RSD, but there are two professors, a handful of students, and my bosses on campus who are fully aware of it. I pretty much just tell everyone else I have nerve damage and leave it at that. For the ones who know what's going on, I don't tend to complain to them at all, so they know that if I tell them something serious, they do their best to accommodate. In regards to in class stuff, I let them know from the beginning if I have any issues that may arise (ie - I'm a science major and I need to stay away from touching ice and burning heat, so I let the students and professors know from the beginning that these are my limitations). I haven't really run into any instances where I need any accommodation with class material in regards to my RSD...


Are there any strategies/activities that help? (with anxiety, memory, participation):
This is a hard one for me...I'm still working on it. I'll admit, sometimes I put my health on the back burner because my education is quite important to me. I sense an ER visit in the near future as a result of this...but I really want to graduate college and take advantage of opportunities on campus, despite my RSD. In terms of memory, I keep a journal with me in my purse 24/7. It's a calendar-type journal where as soon as ANYTHING important comes up, I write it down. I know that I need to check it daily, so that helps a lot with my memory. Also, I don't know if you have an iPhone, but they have a checklist app where you can set up categories (health, homework, meetings, major assignments, long term goals, etc) and put different things in each category (homework: chapter 21 homework, organic quiz due Friday, study for history test, etc.). As I finish each one, I get to check it off. This sounds cheesy, but it helps a TON. In terms of anxiety, I make sure to know my limits. I know that if I have a major test or two in a week, I try not to over commit to anything. I tend to be quite laid back - though the RSD does result in some anxiety...Basically, I make sure to know when I want to be surrounded by people and I know when to ensure that I am not near people so I can calm down and such. In terms of participation, I have a hard time saying no - partially because I don't let many know that I have RSD and most people think I just have bad feet and one really bad leg. If you want to get involved, I just tell myself that I want to take advantage of as many opportunities as I can, despite my RSD. Granted, if it's something that I know will result in me becoming bed-ridden for a few days, I won't do it, but if it's going to meetings, being the leader of a club, or something along these lines, I remind myself that I am not RSD, I'm Nikki. I'm a college student just like everyone else, and once I am in the clubs and know what I can and can't do, I take it from there. I don't like living with regrets.


And ANYTHING else you'd like to tell me about being a teen, having CRPS and learning would be wonderful!:

I did have an argument with my future roommate and suite-mates about what dorm and floor we would live in next year. I had the higher number of the group with the room lottery selection we have, so we were all relying on my ticket. Their first choice was a building where the only options were second and third floor...mind you, our school is old, so we don't have an elevator in our dorm buildings. Their second choice, too, only had the second floor open...negative. They argued that if another building had the first floor filled, we would live on the second floor. Needless to say, I lost my temper and told them that I was living on the first floor whether they liked it or not. One of them said that I have to suck it up and give them some leeway. This set me off. I was willing to live in any of the buildings we had on campus...only I just wanted the first floor. I told them that if they had a problem with it, they could find another roommate and suite-mate and that I'm sorry my %&@$^ nerves weren't accommodating them, but this is the reality I have to face daily. Well, they all agreed that the first floor was a great place to live.


I hope this helps some. If you have any questions geared more towards college, just let me know!
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