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Chronic pain as a learning challenge


Ravin
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DD was referred to the pain clinic at the local children's hospital. One of the things in the materials they sent home is bothering me. 

 

"Your child should continue to be encouraged to live life in spite of the pain. When school is in session, your child should be expected to attend every day except in instances of fever greater than 101F (unless otherwise indicated by the school), copious diarrhea and /or vomiting, lice, pinkeye, or any other reason mandated by school. Pain should not be a reason to stay home from school."

 

Now, with DD, she has yet to miss a day of her enrichment program just because of pain. She has modified some activity, and sometimes goes to the nurse's office for a bit of a lie-down if she gets a bad migraine while at school--and we've told her if it's bad enough that she needs a sumatriptan, go ahead and call for a ride home.

 

At home, with her schoolwork, it's another story. I have been modifying things for her for years. We try and minimize the amount of handwriting because of wrist pain for instance, and when she's in tears because her head hurts (not just because of anxiety/frustration, I've learned to tell the difference), I'll cut lessons short and let her go rest.

 

I absolutely think that in the long run, she needs to not let pain prevent her from doing what she wants and needs to do--but I've also been trying to teach her to work around it, and that it's okay to take a break if she can't push through. She doesn't learn when she's in pain--she has a hard time learning even when we optimize conditions! I've worked for years at respecting her feelings and helping her get over barriers she threw up when I and other teachers didn't, so what's the point of sitting there with her schoolwork in front of her? That's part of why we home school. The last time she was in brick and mortar school, it gradually took more and more of a toll on her. Am I underestimating her? Or too much of a pushover?

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I would be troubled by that line of thinking, as well. My personal feeling is that we're largely in the dark ages when it comes to emotions, mind-body connection, possible interactions between immune system and mind, etc. I don't really believe that science actually has that strong of an understanding when it comes to what certain chronic conditions are or what causes them, let alone how to manage them. It doesn't make sense to me to adopt an approach that demands that a person in pain constantly tough it out. Sure, sometimes everybody has to keep going even through the pain. But to ask someone, particularly a child, to do this as a lifestyle, I don't think I get it. I guess I just feel really dubious that the pain clinic's advice is useful. Is their idea that pain is just noise to be tuned out? Even if that's true, I feel very skeptical that someone who is actively in a state of strong pain can learn to tune it out at that time. I am not a scientist, but I feel some skepticism.  

Have you ever read any of Dr Sarno's work? There's a documentary that I've read about ("All The Rage") that looks interesting. IDK if your daughter would get anything out of it, but: http://alltheragedoc.com/

 

 

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I think they are not wrong for low-level pain not being exacerbated by the activity (i.e., I'm not going to let her out of sitting there doing school work because her ankle hurts, for instance). And I get the push through philosophy when she's dealing with fibro pain (as opposed to a migraine that makes it hard for her to even think or do much of anything but lie in a low-lit room with a soothing, repetitive activity like knitting to take her mind off of it). I've worked with her to recognize whether it's pain from an injury (which is her body signaling to lay off the injured part and rest), or pain from fibro (which is her nerves misfiring and making her miserable for no effing good reason), which I encourage her to ignore if she can. Often, she can. Sometimes, not so much.

 

I'll check out that link, thanks Trillium!

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Took a glance at that link. It's a no brainer that there is a link between pain and emotions. The pain clinic included a psychologist consult.

 

They gave some specific pointers, like, not calling attention to the child's pain by checking in. DD frequently accuses me of not caring when I use that strategy. I also stay matter of fact about it and ask what she's done about it when she complains about pain, and remind her of things she can do and hasn't (meds, heat pack, ice, whatever). Usually she is looking for empathy, not solutions, and this irritates her. I often remind her that if I could make it go away with a magic wand I would, but I can't, so complaining isn't going to help the situation, along with a sincere "I'm sorry you're hurting." The reminder about complaining is usually on the fourth or fifth time she's complained about the same thing in a short period of time, when we've already run through empathy and solutions.

 

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You wrote that she is looking for empathy, not solutions.

Living with chronic pain and fibromyalgia, is all about finding solutions and exploring the limits of pain one can cope with and continue with activities.

 

But from what you wrote, she seems to be more using it as an excuse?

Reminding you regularly, that she can use this excuse any time.

 

I would be interested to know, if it has more effect on 'things that she needs to', than 'things that she wants to do'?

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Decreasing handwriting due to wrist pain makes sense, but so does finding a way to accommodate such as a dictating program. I think headwork with bad migraine is pretty much impossible, but the work missed should be made up when the migraine is gone.

 

__________________________________________________________________________________________________________

 

stress tends to make pain worse, so cutting down stress is important... it becomes a vicious cycle of stress-> pain ...

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but so is learning to get things done and not use excuses to avoid unpleasant things also important.

 

___________________________________________________________________________

---------------------------------

 

 

btw I got rid of most of my fibro type pain with supplements and related (using internet to search out possibilities and then via trial and error), and it is possible that your dd could get rid of some of her pain as well. It may be (probably is) that it is NOT "no effing good reason" (uh, empathy does seem lacking there!), but rather an insufficient amount of thiamine, or magnesium, or taurine, or _________, or several different things. Or could be that exposures to _______ (chemicals, hormones, radiation, electromagnetics, are part of problem)

------------------------------------------------------------------------------

Finding the underlying cause for migraine and reducing that may also be possible.

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I am so sympathetic of your situation. As a parent it must be emotionally painful. I am a cancer survivor and had a period of time where I had to work with intense pain at the same time or just times I felt pretty horrible so that is the only background I have to come from. I have a few ideas. Can you create a rating scale for her pain and work on proprioception. For example if the pain is a 8 she take this action if it is a 6 she take this action. Also something like zones of regulation modified for pain and just general feelings might help her. 

 

I have a child that can distract herself from pain by concentrating on her work. It is a crazy gift but something that might help your daughter is to explore whether there are certain subjects that she can focus on and do when she is say an 8. 

Because the pain is probably variable it might be helpful to have bins of work for her to do based on where she is feeling she can be the most productive. For example a green bin. If she is feeling well this is intense but very rewarding work ( latin roots whatever)  a Purple bin for work that she can do with ease when she is say a 8. Maybe moving around helps so that is when you guys go to the gym and do water therapy and swimming or say she ride her bike to distract herself, balance board. read outloud something. Maybe math manipulatives. 

 

It seems like the goal should be how to help her to adapt to the pain to be productive rather than just pretend it is not there. I would have to homeschool for now I can't imagine a school unless it was an amazing tolerant and inventive program that would help this child have a successful academic experience. A coop might work because then she can still have the social aspect but you could teacher her something she missed if she wasn't paying attention from the pain. 

 

I would look seriously into an ipad pro with a pencil( we actually use the regular ipad) or a smartpen echo that records while she writes.  so she can remember verbal information and let it sink in when the pain subsides. I have had moments where I have used the boldabeast recorder on my phone for important meetings or appointments because I am feeling wretched and then later came back and reviewed the relevant material as needed. 

 

Regardless of the age if you are in pain sometimes doing work with a standing  desk and then sitting desk can help. A yoga ball chair or those round disks that she could sit on to change positions. Changing positions. Walking around for a minute while you are reciting information. I can't find the link so here is something similar but there is a parent who designed the coolest desk I have ever seen. It goes sitting to standing very easily for the classroom. I promise to come back and put in the correct link but here are a few I have found. Also if you could hang a wrap swing from the seeling I am not sure what they are called but they cuddle the body and help kids with sensory. Perhaps that could be her "reading" space. Or if she has a migrain she could try sensory music 

 

I think this is the standing desk I had read about http://www.marvelfocusdesk.com/joomlaTemp/index.php/for-parents

https://www.fastcodesign.com/3063353/standing-desks-for-kids-its-not-as-crazy-as-it-sounds

 

 

 

also because if she had a pad or something you could have her doing audiobooks when she is moving around. Look for ways to make the material more tactile that helps ignore the pain. She could work at a whiteboard on the wall. 

 

Try to get her bed comfortable and increase her sleep as much as possible. there are certain beds that help with pain she might even appreciate a weighted blanket or not maybe the other direction. 

 

You are an amazing parent and while the experts have ideas it would be so helpful to have a Caring OT that can help her with coping strategies, rating systems, ways to work through the pain those kinds of things. Its unlikely a child can do that on her own. The goal would be not to let her get out of an activitity because of the pain but find a way to modify the activity so she can continue or shift to a new activity so she continues to progress rather than quiting giving into the pain or laying down. 

 

Computer guided  learning might be very  helpful for her if it is module driven because she could work on it sitting or standing and then walk around for a minute and come back to it.  Also it would make it easier to review the material if she missed something because she wasn't feeling well. My daughter took an online health class through distance learning over the summer and it was very helpful because they didn't care if she did the class at 5 in the morning or 5 at night. If the presentation of the material is good and the teacher is caring that is a very good solution. 

 

In a coop you could just make sure the other parents are aware and they would help keep her going and she could record important material or finish it at home. The problem with a tradtional class is the teacher isn't going to stop, the teacher isn't going to review and there are 30 other kids who are moving forward so if she misses stuff it is far more difficult to fill it in. If you can set up the environment for success she may grow into that but to just throw her into the pond seems a bit unhelpful. That being said I have one child with low motivation and homeschool would never drag that kid along. Its better for me to teach him strategies because if the pack keeps peddling he has to keep peddling to keep up and the peddling distracts him from the lack of motivation. 

 

for wrist pain in writing look up Myscript stylus app and combine it with something like notes plus. It recognizes even sloppy writing and converts it to text. She can also switch to dictation quickly and then switch to typing with a bluetooth keyboard as needed all in the same document. I have also have read about a few math  apps such as Mathpad and modmath.  Panther Hearwell , writer, and graph were also worth looking into it. We have every kind of pad but my ipad is the work horse for my son who has auditory issues and handwriting issues. SnapType and clickerdocs are both apps I found . It would allow someone to take a picture of a worksheet and then anotate it with ipad. I also read about some app that the teacher can wear and it dictates what she says right into your ipad and records it so you can listen to it later if you miss something. 

 

Here is a link to a site that has an app finder to help with almost every kind of limitation. https://www.understood.org/en  they keep updating it so you could see if there were ideas that might help. 

 

 

------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

I have a child with different challenges but I remember this story about a girl who had no arms and was raising a baby. https://www.youtube.com/watch?v=77iM2fqqNSU in a seperate video they interviewed her parents and they recounted how painful it was to just have to let the child go in her room and figure out how to get dressed by herself. As a parent I think of that story often as I try to thread the needle in helping my kids but not disabling them with too much help. I have to empower them and coach them through their disabilities. 

My heart goes out to you. I would love if you update us with the solutions you find and more about your daughters journey. 

 

 

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If this is your 14 year old then ahhhh because I have a 13 year old daughter. Motivating is tough, not to mention the hormones and the girl stuff that makes them feel like crap at times. 

Really really reward and praise when she does things she didn't feel like she could because of the pain. encourage and compliment her for pushing through the pain. Support but don't enable. That is a tough age by any measure. 

Edited by exercise_guru
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Took a glance at that link. It's a no brainer that there is a link between pain and emotions. The pain clinic included a psychologist consult.

 

They gave some specific pointers, like, not calling attention to the child's pain by checking in. DD frequently accuses me of not caring when I use that strategy. I also stay matter of fact about it and ask what she's done about it when she complains about pain, and remind her of things she can do and hasn't (meds, heat pack, ice, whatever). Usually she is looking for empathy, not solutions, and this irritates her. I often remind her that if I could make it go away with a magic wand I would, but I can't, so complaining isn't going to help the situation, along with a sincere "I'm sorry you're hurting." The reminder about complaining is usually on the fourth or fifth time she's complained about the same thing in a short period of time, when we've already run through empathy and solutions.

 

This might sound a little cheesy, but could you make some kind of chart for her (or find an app) where she rates her pain, what she's done about it (and it's effect), and then check in more on a daily basis vs. throughout the day? Then maybe reward her in some small way (preferably something that is relationship-based) for using her tools? Would she perceive some kind of more objective/not real-time system as empathetic if it involves an opportunity to bond with you (albeit on a delay)?

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You wrote that she is looking for empathy, not solutions.

Living with chronic pain and fibromyalgia, is all about finding solutions and exploring the limits of pain one can cope with and continue with activities.

 

But from what you wrote, she seems to be more using it as an excuse?

Reminding you regularly, that she can use this excuse any time.

 

I would be interested to know, if it has more effect on 'things that she needs to', than 'things that she wants to do'?

 

We have long since linked those. She knows if she doesn't feel up to doing the things she's supposed to do, she won't be allowed to do the fun stuff, either. I do try to strike a balance, though--otherwise we'd end up in a spiral of discouragement, depression, and misery. There are fun things she foregoes on a regular basis because she just can't handle more on her plate--like Girl Scouts; she could join the troop that meets the same time and place as DS's cub scout pack, and knows at least one girl from the troop from the cub scout campout, but it's on Monday nights after her longest day at her enrichment program, and she is usually too tired and sore to want to go.

 

Often she'll push herself through when she can, just because she wants what's on the other side, so to speak. Often fun things get cut short at her request, too.

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Decreasing handwriting due to wrist pain makes sense, but so does finding a way to accommodate such as a dictating program. I think headwork with bad migraine is pretty much impossible, but the work missed should be made up when the migraine is gone. __________________________________________________________________________________________________________ stress tends to make pain worse, so cutting down stress is important... it becomes a vicious cycle of stress-> pain ... ---------------------------------- but so is learning to get things done and not use excuses to avoid unpleasant things also important. ___________________________________________________________________________ --------------------------------- btw I got rid of most of my fibro type pain with supplements and related (using internet to search out possibilities and then via trial and error), and it is possible that your dd could get rid of some of her pain as well. It may be (probably is) that it is NOT "no effing good reason" (uh, empathy does seem lacking there!), but rather an insufficient amount of thiamine, or magnesium, or taurine, or _________, or several different things. Or could be that exposures to _______ (chemicals, hormones, radiation, electromagnetics, are part of problem) ------------------------------------------------------------------------------ Finding the underlying cause for migraine and reducing that may also be possible.

 

There is absolute empathy in that expression. That the doctors can't point to a specific reason for it doesn't mean that it isn't real pain. I understand this and have made considerable effort to make it clear to DD that I understand this.

 

She's on a multivitamin (Smarty Pants) and we just started magnesium.

I suspect the current migraine trigger may be hormonal--but I haven't convinced her that it's worthwhile to track her cycle and I'm not doing it for her.

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The ped pain psychologist is going to do a consult with her therapist, she is in physical therapy and will be starting OT as soon as we get the prior authorization from insurance.

 

So far, so good. The goal is to get her in shape to be able to handle brick and mortar high school--which she is starting in the fall at her own and DH's insistence.

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For my daughter now in local charter high school we have her on a lighter time schedule.  We chose the school because it is challenging and we're able to keep her days shorter.  As a freshman she went from 9:30 until 1:30.  This year MWF she goes 9-2 and TR she goes 9-11  She takes about four classes a semester. ( her school has them take college classes as soon as they are capable so she took one college class first semester, two second semester, this semester she is in three college classes and one high school class) School has a very strict attendance policy which we try to follow.  They know about her chronic disease so they give us a little room and she is often in nurses office between classes to rest.  The expectation is she will go to classes and do the work.  Yes she has chronic headaches, migraines, stomach pain etc but since these things aren't going away and are "managed"  she needs to do the work.  This is her choice, she is very bright and wants to be a biomedical engineer in future so she powers through most days, naps most days, and keeps a pretty quiet social life but has friends.  She is now a sophomore and is doing well.  Spring semester was rough last year as she got the flu and missed quite a bit of school and felt really awful for weeks but she made it through, did well in her classes so she's pretty proud of herself.  Learning how to balance and manage self care, school work, health, etc is a challenge but she is making good strides and we're trying to help her find how much is enough vs too much.

 

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Well if the big goal is to get her in a brick and motor school then  consider letting her do some of the requirements ( like Health,PE, or Speech) in summer school. It will give her a chance to build credits if she is going into highschool and also allow her to get used to the way things are done. (She needs to be able to keep a day planner of assignments) It also will give her a chance to test drive the whole experience before fall.  Also at that age the power struggle can kick in so maybe a bit of autonomy and problem solving in a controlled situation will improve her odds of doing well in the fall. 

 

My daughter is doing speech this summer Its a requirement but I am more thinking of it as a speech camp to get her out of the house as at that age it ain't an easy thing in my house. 

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