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?

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.

Hi buckhorn,

I just want to state categorically here, and in no way to offend anyone at all but it is absolutely impossible to 'put the pain out of your mind' when it is bad pain. The best you can hope is to be distracted enough at times that the pain signals are secondary to whatever is taking your attention. You can get used to the pain, but that doesn't mean you're not feeling it just as badly.

It's very honest of you to say that you have no idea what she's going through - one of the things many of us have dealt with is people thinking that they DO know, and that their bad back/headache is the same kind of thing, and a couple of Nurofen should put that right...

Being in long term bad pain day to day is hard to explain. But I'm going to try here, so please forgive my wordiness ....

Imagine being thumped hard on the arm in the same spot on the hour every hour for a whole day. To start with it hurts badly and you wince and maybe even cry a bit, when you're hit again it throbs and seems to travel further through your arm, it shakes you up. The more times you get hit, the more you get used to the pain coming, the more you brace yourself for the impact of it each time, the more tense you become as you expect the next time...you get used to it, but it hurts just as much, and you hate it every time. For us, that thump is the pain of CRPS, but each thump is every minute of every day of our lives. And the pain is often worse than one of those very rare horrible eye-crunching, darkened-room headaches when you daren't even move in case it makes your head explode .

We get used to it to a certain degree, but just bracing ourselves against all that pain makes us scared, and irritable and forgetful and clumsy and moody and sad and just plain low at times. We are on high alert all the time for the pain to kick us again. We are tense and we are scared. Because although it's bad normally....when its really bad, it is properly hideously awful pain that makes us want to pass out rather than live through it for another second. Traditional painkillers don't work well on neuropathic pain like CRPS, even morphine, so we are white-knuckling the pain ride a lot of the time. The fear can be overwhelming at times - fear of the pain itself, fear of it never going, fear of the future, fear of all those hours and days and weeks and months and years of pain ahead of us without relief.

Imagine the worst pain you've ever been in, even if it was just for a few moments....then imagine that pain being there every single day as soon as you wake up, imagine it being there all the time, keeping you from sleep, imagine it never ever really going away, imagine having to work through it, and try to attend a family dinner with it, and talk to people through it. Imagine how cranky you would be. Really bad pain is a terrible curse on your heart, a proper black cloud that haunts your steps, a spine-tingling howl in the darkness. All those things and more. I know it sounds overly dramatic, but it really does feel like that sometimes.

Of course we have good and bad days, but even the good days would rate as pretty crummy on an average person's scale!! On a good day I can laugh and smile and get about ok ish for short times, and maybe plan a short outing. On a really bad day I cry with loneliness and pain, and my guts twist in hopelessness and fear, I can't walk more than a few steps, I can't concentrate on a thing, I can't hold a conversation, I can't read or watch tv. I just exist until the worst is over.

I hope that makes some kind of sense. There's an old saying about not judging until you've walked a mile in someone else's shoes.... I admire your attitude to this immensely, it must be horrible trying to figure out the best way forward. Of course your daughter needs encouragement to try things and get out and not give up, but equally she needs to know she can trust her family not to push her beyond her limits, or to forget that she is carrying this pain. Doctrs tend to forget that pain in a medical textbook or in the back of a pill packet is a very very different beast to properly bad long term pain. Saying things like 'put it out of your head' are hugely unhelpful! With time she will learn to cope better with things, and feel more confidence in her ability to do things she used to take for granted, but for now it probably feels like she's been in a car crash and nothing is the way it should be. It takes time. Learning to pace yourself takes months and months of getting it wrong and having to recover from overdoing things. It's common in the early days to do something one day and then spend the next day in terrible pain unable to do a thing...and we all still get it sometimes. You have to re-learn what your body and system can deal with. Even doing one lesson a day is a regular commitment that might seem overwhelming and like climbing Everest on a bad day.

Sorry for the wordiness and apologies if I've seemed preachy. I know I can seem a bit like that when I get passionate about something, but I'm a nice person really

Take care of yourselves,

Bram.

Bram, tears are streaming down my face. Its like you are talking about me without the shield of my public face. The one I wear out in the world in order to be "ok". Thank you for your words and ability to increase awareness and understandng. ~ Lottie

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.