My 15yo daughter has been diagnosed with "amplified pain" by a group of docs, not RSD or crps, which they said was along the same line. Had it over 2 years now. At this point she's missed a lot of her sophmore year of high school and we're really struggling with the school district and getting her to do the work at home. This isn't a question about battling the schools or a diagnosis, but trying to understand her pain level and how much to push her to make to at least a couple of classes a day at school. She's not very good at communicating her pain and we're not supposed to ask about it, which makes it difficult. She made it to a couple of days last week to one class, but then couldn't make it the other days because her back hurts after sitting, especially in those hard chairs. She seeing a therapist now, but that's one day a week and we're looking at probable stint at Mayo pain clinic. She has a homebound teacher coming but all they really do is deliver school work, no teaching.

So help me out, do we push her to get out of the house, push through the pain, no matter how much it hurts? How much do we push and how quick do we go to get her integrated back into a school day so she can make it through the year? Do we tell her she has to go to 1 or 2+ classes/day, no option, even with tears?
Any experience and your insight would be greatly appreciated.
Mike

Hey buckhorn

Wow, that's a tough question. So much depends on what your daughter is dealing with in terms of pain, and why. If you push too hard she cold suffer too much, not enough and she could miss out enormously. I feel for you in that dilemma.

You said you've been told not to ask her about her pain by her docs - I just wanted to mention that i hate it if nobody notices when I'm really having a hard time. It makes me feel really low and like no one cares... I'm not implying anything at all here, just wondering if the docs have said what their reason is for saying that?

Has she had any injuries or accidents prior to this? And did the docs seriously consider CRPS/RSD? Sadly there are a lot of docs who don't know it well, and it can be set off by something as simple as a sprained ankle. It can also present predominantly with just pain...too much pain for any apparent reason... I would seriously consider another opinion, preferably with a doc experienced in CRPS, just to be sure. It sounds like you still have lots of questions about this, and quite rightly. It must be terrible to see your daughter suffering and not know what to do for the best.

I can't tell you to push her hard, or not. That has to be your and her decision. But I would advise you to include her in discussions and to explain why it's important that she does as much as she can. She may have good days and bad days, be able to do some things on one day and nothing the next. Pacing herself will be important with any pain condition, but that's a long tough lesson to learn at any age. Have you spoken with the school about accommodating her needs now? Even something as simple as a more comfortable seat (carrying her own cushion?) or adjusting her table height for writing might make school more tolerable. I can understand her not wanting to be at school in lots of pain, being in pain in public is horrible, particularly if you think people don't really believe you. You do just want to hide away where it's safe.

She needs to know that you believe her pain, but that you also are concerned for her future, and that's why she needs to try to do things when she can. Is there any way you can get a home tutor to actually teach her a couple of times a week? It's a shame the provision isn't much good for home schooling, but I suppose it's to be expected. She needs to be able to motivate herself to learn and get out, so as much support as possible is a good thing. Rewards/praise for when she does push herself, and quiet tolerance of the times she can't do much. Pushing her too hard - past the point of tears, etc - might cause her to withdraw and just give up, especially if she doubts her family's understanding.

Definitely encourage her to get out of the house, to go to places she likes and feels safe in initially, if nothing else. You can build from there. Forcing her to go out when she hates the idea might do more harm than good. Again I can only say from my point of view. I'm sorry there are so many unanswerable questions.

Just keep talking together so that she feels you are all in this together, and that she can trust your support. Don't ever give up on her going out or going back to school, but try to understand that she might need to find her own new levels of tolerance for pain, work, patience, concentration, etc. She'll need support and encouragement to get back into a full life, and it sounds like she is lucky to have you behind her

Take care, and let us know how you and she are getting on. I hope things improve soon, but be prepared for the long haul. Some things just don't resolve easily... I'll be thinking of you both.

Bram.

I'm so sorry for the situation you are in. It's hard, very hard to watch loved ones suffering and to know when to encourage them or when to hold them back.

I'm wondering also why you aren't allowed to enquire about her pain, has she asked you this, or have the doctors said so?

To the point of tears, well it depends on what type of tears, is it tears because she thinks no one believes her, tears because of pain, tears because she just doesn't want to go because she is a teenager, tears because you are making her? Like all of us in constant pain, we can be moved to tears because of a number of things. As a young person now, it would be very hard to not become resentful of you down the track if you force her to do something that causes her future problems or undermines her current health unless you have an open and frank discussion regarding the benefits she has to gain from social interaction and learning opportunities. It's important for her current and future mental health that she sees being out and learning as something good for her and not just something you insist on her doing.

With the home bound teacher, can you engage them in discussion about creating learning opportunities that are interactive and motivational for her? Is it about funding available to them? Can she be teamed up with another individual in the area for home schooling so there is more to it than just her being on the receiving end?

You are a wonderful and caring parent to reach and put yourself out there amongst us long term pain sufferers, we have all at some stage been exposed to uncaring or ignorant family members and the pain we experienced from those occasions often drives our thoughts in today's world.

This is purely my opinion...and not meant to offend anyone...and I realize this is a difficult decision you are facing and that there are no easy answers.

If it were me and my child...I would NOT force them to go to school. What she is dealing with is incredibly difficult and piecemeal classes here and there while she is suffering won't do her any good either. I know from experience that when your pain is at a certain level...until you learn to cope with it...physically sitting somewhere and being forced to do something doesn't mean any of it will sink in. So she would be aggravating her pain and getting no benefit from it.

I would look into home schooling...possibly some sort of online home schooling if possible. Then try to get her in some sort of routine every day where you work on her health and getting her better...but also on schooling and keeping her up to date with class work. This way she can be in a safe, comfortable environment and continue learning while also working towards getting her pain under control and learning to manage it. Until she learns to manage the pain...forcing her to go to school will be a wasted effort (in my opinion).

Now...with that option she is losing out on some things. She will lose out on the social interactions that you get in school...but she's missing those anyway right now. If she can successfully complete high school and get her pain under control...then she will be able to continue on to college and hopefully get the full social experience of school that she cannot get right now because of the pain she is dealing with.

I honestly think that you guys should look at all the possible options you have: forcing her to go to school (at whatever frequency), home schooling, online schooling, and anything else you can come up with....and then decide what will be best for her overall health and well being. Only you as a family can decide this...and your daughter should be included in the discussion. Whatever you choose...you need to lay out the goals and expectations and make it clear that you are trying to do what is best for her because you love her.

Take care and good luck.

Thanks for all your thoughts and concern. We've already seen multiple docs, gone to Pittsurgh, gone through the whole schooling routine, have a 504, homebound that delivers work, but the problem is getting behind in the normal school work. Online schooling is not good, pretty outdated tech and materials, did it last year. Trying to work it out so that she starts going to 1 or 2 classes and works her way up to a full day. We've been told by a couple docs not to bring up the pain, she has to learn to put it out of her mind. She has pain in her back, internals, hands arms, legs. The tears come from the pain.

Really just wanting to get the experiences and thoughts from someone who has lived with amplified pain, what you suggest as to how much we push her to go to school. I know that everyone is different, but we have no way of comprehending what she is feeling.

She says she not able to go to school for more than one period. When she does something outside of the house she generally needs to spend the next day in bed dealing with the pain. But then everything we've read says to stay active, even with the extreme pain and we have to help her to live with the pain and live a life, as much as possible.

Next step may be the Mayo, anyone have experience with it?

When it comes to not talking about the pain...I think there are a couple of things to consider (and I apologize...this got a lot longer than I thought it would when I started typing).

One...as everyone has said...you cannot put the pain out of your mind...it doesn't work like that. It's far too intense and it never leaves you. The BEST I can hope for is that I can find things to help distract me from that pain...which I am only able to do after discovering a bunch of coping mechanisms for dealing with it. I work full time at a very physical job...but I had to take over a year off where I was stuck in a wheel chair for much of that time and then it too me several months after being back at work to really get to a point where I could handle the full scope of my job. And even with all that...I still have very bad days where nothing...NOTHING...can distract me from the pain.

Your daughter doesn't need to put the pain out of her mind...she needs to learn to cope with the pain. Until she can cope with it and learn to function despite the pain...trying to do anything else will be useless. And in order to learn to cope with it, figure out what triggers it, what helps it, etc...she needs to TALK about it honestly without someone telling her to toughen up or put it out of her head. I've had people say that to me and all it does is make me feel like they don't understand and that they don't believe me when I tell them just how bad it is.

The second thing...and many may disagree with me here...but my personal experience is that I DO need to speak up when I am in pain but I DON'T want people to treat me like I am broken. I am still a person with all the same desires and needs I had before. I want to go to work. I actually love my job and take great pride in doing it well...so don't tell me I can't/shouldn't do something just because it will cause me pain. If I didn't do things that caused me pain then I wouldn't do ANYTHING...but it's got to be my choice about what is worth it. Because to do anything is a trade off...a balancing act between what I want to do (that will make me happy and bring me joy) vs the amount of pain it will cost me to do it.

Can you imagine every single day of your life...having to weigh those two things for every single thing that you do?

And yet...it is what it is and the worst thing for me when I have to deal with this very personal struggle (and no one can help a person in pain figure out that balance...they have to do it themselves) is when I have someone tip toeing around me...asking me constantly if I am okay, insisting on doing things for me when I haven't asked, treating me like I am totally useless (not in a mean way...but in a way that makes me feel that way because they don't think that I can do anything for myself), etc.

This is why you have to talk about the pain...openly and honestly. Your daughter needs to feel safe and secure...knowing she can tell you what she needs and without you making assumptions about what she can and cannot handle. Because only SHE knows the answers when it comes to what she can handle. She will need a supportive environment and to be surrounded by people who don't doubt her.

School at this point seems like it is too much coupled with the pain she is suffering. The reason I mentioned home schooling or online schooling is that this would give her the flexibility to work the school around her medical needs. She shouldn't give up on trying to find the answers and to get treatment.

If it is RSD/CRPS...then you are right that she needs to keep moving as much as possible...but that doesn't mean go about life as you used to. You need to do the RIGHT kind of movement and therapy. Trying to continue normal activities will just make her push too hard and then end up bed bound for a day or more. Constant movement is really the key...to do exercises throughout the day every day. But these need to be focused exercises...ones that are focused on her gaining/maintaining function long term. If you can find a good physical therapist who can arm her with these exercises to do at home every day...that will be huge. Then she needs to commit to do these things every single day. I used to spread mine out throughout the day and had a checklist to make sure I completed them all. On bad days when I was unable to complete the more advanced exercises...I would revert back to the easier exercises that I did when I was wheel chair bound so that I didn't miss a day. Doing this was a full time job by itself...and that's why I needed to be off work while I did it. There was no way I could have focused on my medical needs at the time, learning to walk again and cope with the pain, while also trying to continue working. If I could have done any of my work from home...I would have jumped on that...because I hate down time and I was miserable during my time off work not only because of the pain but also because of the boredom. When you are bored...there really is NO distraction from the pain. So if I had schooling to do during that down time...I can see where that would have been perfect for me.

Again...I am only talking about my personal experiences and what I NEED or NEEDED when I was going through a period like your daughter is in now. I have said many times that my family and friends don't really "get it"...but I understand that they can't. When you don't experience this sort of pain day in and day out...you just can't comprehend what it is like. You can sympathize and be supportive and try to be understanding...but you can't KNOW what your daughter is going through.

She needs to be a key player in making these decisions about her future and about what she is able to handle TODAY. While getting behind is school may not be ideal...it might be the best option for her long term to wait until she is physically and mentally able to handle it. Only you guys can decide that...but your daughter needs to be a part of that conversation. She also needs to feel that she is really free to tell you what she can and cannot handle and that you will believe her. Be careful not to pressure her to try something that she doesn't think she can handle right now...it will end badly. You might not even know you are doing it either...which is why you need to be careful. I have zero doubt that you are motivated to get her to go to school because you love her and want what is best for her...that is clearly the case or you would not be here asking your questions.

I wish you and your family the best of luck in this difficult time and hope that you can come to a decision that will work out for your daughter. Take care.

I would try to find a doctor who will help her get the pain down to a manageable level so that she CAN get through a few classes at a time.

I STRONGLY disagree with her doctor's advice to not ask her about her pain. That would make me feel very disrespected, like people didn't believe that I was in pain or that it feels as bad as it does.

The good articles and books that I have read advise trying to stay active, but not with the pain being extreme. First there should be treatment to get the pain down to a more reasonable level, THEN the activity level should try to be raised.

I have 2 children. I intended to go with "natural" childbirth for the birth of my oldest son. Not an at home birth in the bathtub, but a hospital birth with no meds. I changed my mind on that once my labor became advanced. Hello epidural ! Now, I'll push this baby out. The next year, when it was time for baby number two, my body knew the drill better, things progressed quicker, I had some intense pain but I could handle it......just until it was time to push. Then I couldn't deal with the pain, but it was too late for pain meds/an epidural. Let's just say that everyone on the L&D floor heard exactly what I thought of that !

If my sister and my husband followed anyone's advice to "not to bring up the pain, she has to learn to put it out of her mind" they would have been instantly excommunicated.

If some well meaning, but misguided, person had told me to "live with the pain and live a life" or "stay active, even with the extreme pain" I would have hit them with whatever I could have reached.

I'm purposely using the example of childbirth, instead of CRPS pain, hoping that you might find it more "accessible" I know you're a parent, but I don't know if your wife had a vaginal birth, C-section, or if you adopted. I guess I'm hoping that it was a vaginal birth, for the point of this example. If she had JUST pushed out your beautiful daughter and you said, "You should be active, exercise will help the uterus contract and help the profuse bleeding stop quicker, let's go for a 5 mile walk !" What would she have said to you ?

I think ignoring the pain, or downplaying, or not acknowledging it is a mistake.

**********************************

Sorry, I just ran out of steam dealing with my own pain, so I have no transition from the above to some random thoughts about making it easier for her to go to school.......

I'll go to a store looking like a grub in sweatpants, hair up in a bun, etc but if I go to a family gathering or out with friends I want to look as good/normal/healthy as possible. Dealing with chronic pain, picking out an outfit can seem overwhelming. Taking a quick shower and dressing requires either a short or long acting narcotic. Taking a shower including hair washing and/or leg shaving plus getting dressed requires a combo of BOTH the long and short acting narcotic. I only blow dry my hair and curl it a few times a year, but the efforts that I put into that when I was a teenager would take more pills than I can currently count. Then there's make-up......the list goes on.

I'd talk to your daughter to see if there is anything that you and your wife could do to make it easier for her to get out to school when she does feel like she can. Can a friend come over and line up a weeks worth of outfits so they are ready to go ? Can you afford/would she like to have spa days with waxing to eliminate the need for bending over to shave ? (sorry, I don't even know if she has allodynia) Can someone help with her hair or would a simpler hairstyle work ?

Can you encourage her to try to stretch her day....meaning, if she thinks she's only up to one class, could it be the last of the day and then take her to the mall for an hour or two ? Personally, I like to shop more than I liked to sit in school, BUT if I could go to a class and then shop for 2 hours, then I know that I COULD have gone to 2 or 3 classes instead of just the one. Just she still hang out with her friends ? They can help with offers to get her out of the house or be distractions when she is home.

I've had a few occasions recently where I almost didn't make it out. Too much pain, too much effort to get ready, sooooo tempting to just lay down and cancel my plans. Much medication and effort later when I am out, I'll have one of those brief periods when I am deep in a conversation or laughing at something, then sit back and think, "Ouch, sitting back just pulled on my neck" and then it will hit me.....I had forgotten about my neck for a few minutes. With the right distraction, it is possible to not feel the pain.

The thing is, someone else telling me not to think of my pain, does NOT help ME. It makes me want to injure that person. I think that has to come from within, to notice that when I am distracted by a great movie, a great novel, or a fun time with friends, I am not aware of the pain for brief periods of time. The thing is, I had to get enough other pain management tools in my toolbox (narcotics, anti-inflammatory, heat, ice, topical products, TENS, hot tub, cervical traction, etc) to be able to enjoy those activities. It's also my choice to do something or not. If someone told me what I HAD to do, and that I was EXPECTED to somehow deal with the pain, that would aggravate me.....and my pain.

I know this is tricky because this is a teenager. Most of them would skip school on a regular basis if they could get away with it. It must be hard to respect her reports about limitations because of pain if you ever suspected maybe she just doesn't feel like going vs pain preventing her from being able to push herself.

Buckhorn, I completely agree with catra...and as I said in my earlier post, your daughter needs to find her own levels of what she can deal with now. No one can set that for her. She's missing out on loads anyway, no matter how hard you try, she can't do/achieve everything (social and schoolwork) a 'normal' child can. Schoolwork is so important, but there is some good online stuff now - I'm sure your local educational board or her school should be able to recommend some sites.

What is vital, is that your family does everything they can to help her to keep contact with her friends from school and in the neighbourhood. We have all lost friends because being in pain all the time makes socialising as before so hard, and impossible in lots of instances. She has more chance of getting out and about if she has some incentive, for instance going to a friend's birthday, or into town to shop. Friendships can fall apart very very quickly, and even the best ones can take some work to keep things going when one person's circumstances change so much... If she becomes isolated from the world she won't want to go out, and then your world shrinks very fast. It's something we have all fought against.

You are doing such an amazing thing in reaching out to find answers for our family They are lucky to have you looking out for them. Good luck. Tell your daughter she isn't alone with this, and there is always a way through. I hope she is doing ok today.

Bram.

I'll echo everything said by the others here.

Does she have a good Pain Mgt. Dr. and a really good physical therapist?
There's no "magic bullet" or cure IF she has CRPS/RSD. It's a really tough balancing act. It is POSSIBLE to get the pain at manageble levels especially if PROPERLY treated as early as possible.
P.M. Dr.'s have a variety of treatment options to explore. I would recommend doing your homework on any really invasive ones.
In the short term, this will be time consuming & won't help in getting her caught up in school right now. But concentration is difficult anyway with that much pain.
For inspiration: My P.M. Dr. has 1st hand experience with this. She had it BAD when she was a teen & was wheelchair bound for some time. They finally got her into remission & of course she walks now. All I know is they finally got her inpatient treatment with drastic drugs.
I'm not in remission but very often my pain is at manageable levels, thanks to her.

Invite your daughter to join us! There are wonderful, smart, giving people here. There also is a 16 year old who occasionally chimes in , maybe they could share some things since they're so close in age.