Pain Levels and School
 

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.

Agree with 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.:hug:

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...:rolleyes:

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 :rolleyes:.

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 :winky:

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. :hug:There also is a 16 year old who occasionally chimes in , maybe they could share some things since they're so close in age. :winky:

Told by doctors not to bring it up
 

Hi buckhorn! I'm sorry but I just have to say something about this. I must say I am completely taken aback that doctors would suggest you don't bring it up. Statements such as that, to me, well they lead me to believe they don't necessarily think she is in the constant pain she is telling you she is in.

Doctors and far from perfect, I personally have been on the receiving end far to many times where the medical fraternity have made me question myself and my sanity. Pain sufferers are unable to put the pain away from our thoughts by simply not talking about it. It lives with our every breathing moment and not just when we are awake. I recently learned from overhearing conversations that my pain causes me to cry in my sleep. And I can tell you, in my sleep, I'm not consciously thinking about my pain.

Your daughter needs to have her daily living moments recognised and acknowledged. By not mentioning it you are denying her an opportunity to voice how she feels. As a pain sufferer being able to speak about it is all we have left.

For someone this young she is facing a lifetime ahead of her filled with pain. Until you and she have tried all avenues exploring medication, hardware implants and or surgical options she will be unable to live and enjoy a meaningful life.

Notice I didn't say painfree. I've lived with pain since I was twelve. I was an athlete and forced to participate in schooling and sporting events. I was very, very good at sport, a junior state champion, and I used to cry, I would cry it was hurting me and my poor mother and father thinking they were doing the right thing made me get back out there. They, my parents thinking the tears were just a front to get out of training because I was lazy. Now of course we all know better, not a month goes by without my mother blaming herself. Now she is 82 and I'm 52, lately she has begun to blame herself for not taking better care of herself when she was pregnant with me. My mum lived a healthy drug and alcohol free pregnancy, there is nothing she did that caused my poor health, her mother, my nana lived a life full of pain, I have taken after her I'm afraid.

Anyway, I digress, what I'm saying is your daughter needs to be able to express to you how she is feeling and the only way she can do that is if you ask. None of us feel comfortable just coming out and raising the subject of how bad we feel that day. We feel guilty enough that you have to suffer our suffering so we are not going to willingly open the conversation up ourselves.

Forgive me, I don't mean to offend and I'm sure many will disagree with me, but this is a forum for us all to express our opinions and those reading can then pick and choose their actions from what has been written. So that said, it seems to me you are mainly concerned that she is falling behind in her schoolwork from her peers in her age group and while I can understand that, I have to ask, does that really matter at this stage? I blew my school years, I was in so much pain with no one who would listen to me, and so, I became very rebellious and resentful. It wasn't until in later life when I had a handle on the pain and had then better options available to me to control it that I found the energy and desire to further my learning.

I had my first spinal fusion at 16 and subsequently missed 3 months of school. I did the latter half of studies and my year 11 exams at home, I returned to school for the beginning of year 12 and quickly realised I was not well enough to concentrate on subject matter and without a doubt the end result of trying to study that year would end badly. I spoke to the guidance counsellor and armed with options then spoke with my parents, we agreed I could attend college and do business admin learning how to touch type, office management and bookkeeping. Best decision of my life, it opened doors for me to get into employment at entry level and work my way upwards. I travelled and found work easy to get with the office skills I had. 12 months later I had a bad fall down the stairs giving my father the shock of his life as he sprinted from his bank job through the city to where I had got my first paying job, getting there in time to join me in the ambulance. Not sure why, but I decided to return to school. I went to a college that enabled me to study and complete year 12 and in the process gaining good aggregate score levels to enter whatever university I wanted. Still that year was enough, studying hurt me, sitting on those hard chairs all those hours each day didn't fill me with the enthusiasm to continue my education.

Throughout my 20's I held down various office roles with varying responsibilities, 3 years working for a thriving fruit and nut company doing office work and accounts. 3 years working for a thriving wine company doing admin, accounts and payroll. 3 years managing payroll for 400 plus people in a government role. Those roles lead me to securing a simple payroll clerk job in London UK in a good hotel company and they, bless them, they encouraged me to go back to university. I guess it's because I could do it part time, the thought of being able to sit and study at my leisure at home sitting, standing or lying down appealed to me. I went to City Lit University in Central London and studied human resource development. I completed it and enjoyed it so much, I decided to do it again, this time doing human resources management at Thames Valley University. The long and short of it all, I worked for Marriott hotels UK for 10 years and they paid for my education, they paid for me to attend University twice and I did my Masters.

Those study opportunities began in my 30's, they enabled me to grow, to continue travelling and live a life outside of the pain that never, never ever left my being. I have had many ups and downs, but those years of studying were perhaps some of the most exciting of my life. Certainly they were up there amongst the busiest. I enjoyed the time in study, I was also working full time, my dad bought me a desktop computer when I began studying HRD and then when I began HRM my husband bought me a laptop. Studying HRM I attended uni twice a week for 2 years and drove 50 miles to work and again home, 100 miles a day. I had credit from HRD go towards HRM so didn't have to do the 3rd year. In all, I studied for just on 6 years while working full time. It was painful but worth it, the difference being, I made the choice to do it so it was all on me.

Sorry, a very lengthy blurb, I do go on and on and tend to digress, my sincerest apologies.

I guess what I'm trying to say is, there is a lifetime ahead of your daughter to study, just because she doesn't complete schooling at the same time as others her age is not the end of the world. Let her find her way with her pain and establish ways of controlling it and then, then she can make choices about her education.

I hope this makes senses and I apologise, sincerely apologise if this message offends anyone. We are all different and we all handle our pain in different ways, but the one thing we all have in common other than pain is trying to live with people who try as they may, just don't get it. Not until you walk in our shoes can you begin to comprehend what we go through. We would not wish it on our worst enemies. Think of a toothache that no matter what you do you can't relieve the pain, or as I heard my husband describing it to a very dear friend, imagine your testicles are being squeezed in a vice. We are never able to push pain away by not voicing it. It is with us every sleeping and waking moment.

I long for the day where I can ride a horse again and just canter away in the sun and the breeze.:hug:

Very well put Pamela. I messed up my schooling, but went on to study independently and get my degree, and I now teach. It's never too late to learn...:winky:

Bram.

Some docs prefer not to make a diagnosis of RSD/CRPS. They also tend to try and keep their patients in the dark about the symptoms of the disorder--as if because we read about them than we'll manifest them. If this is going on than it's probably a good idea to explore a second or however many "th" opinion.

An hour per day might be all she is capable of. Many of us have ways of coping when we're out in public: things like learning deep breathing exercises, meditation, utilizing soothing music, using Lidoderm patches, tens units, etc.

Has she tried taking one class and then having a break the next period where she could go somewhere quiet like the nurse's office or the library, and than attempt third period? Does the school have a warm pool? If yes, she might try and see if swimming reduces her pain...

The more she enjoys her classes, the easier it'll be to manage the pain. So, if she loves Art and English, don't force her to attend a Math class she hates, for example. Smaller, quieter classes might be much easier for her.

She needs to determine what exacerbates her pain, and honestly talking about it might be what is missing. A friend of mine who was very sensitive actually better at recognizing when I started to hit upper pain levels before I did from my facial expressions... Working with a Pain Psychologist can be very helpful as well. Until she's given permission to verbalize her pain levels to you, it'll be impossible to gage if more class time is realistic. If she's in enough pain to send most people to the emergency room than she'll learn nothing in a classroom anyway. If she's merely uncomfortable (which I doubt) than she should be pushing herself more. The fact that she needs recovery time after attending school is a clue that she's suffering higher pain levels though...

You might consider finding a local RSD/CRPS support group for her where she's hopefully meet some friends her own age.

The good news is that she does have a good chance for remission with intensive treatment!

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 know Lottie, Bram is always so eloquent but right on the money too!
I've said it before, she should be our spokesperson, but I'm sure her plate
is already SO FULL!
Don't mean to talk behind your back Bram, it's all good! :D

Hi Mike,
You are a good and loving parent to solicit advice.
May I suggest you let her decide what she can handle. The very last thing she needs is the additional stress of being forced to go to school and sit in those Uncomfortable desks or worse yet, go only so she wont disappoint her parents. She may decide to go occasionally so she gets to see her friends and does not feel so isolated. 15 is a terrible age to be going through this. If she doesn't get to school much maybe have her friends over for a weekend lunch or weekday dinner, just something simple like pizza. She may have some close friends who would love to help you organize it and maybe help her with her homework.People often complain about self absorbed teenagers yet, I have seen some amazingly compassionate kids who have learned it feels good to help others.

If she is in pain , she is not going to learn or retain much anyway so you are just wasting her time and making her feel physically worse and stressing her. No Mike, don't force her to the point of tears....if she gets behind, that is not the end of the world. Don't let the schools put the college pressure on her now.

Priorities should be, her health and well being first and education second.

In the US, if your child cannot go to school due to mental or physical issues, the public school system is obligated to provide an education because you have paid taxes. Whether that is a tutor or online learning, at home or school, it would be worked out. Find out the options available to you and then let her decide. My heart breaks for 15 yr old enduring daily pain. It is hard enough just being a healthy teenager today.

I wish you the best...my healing prayers to your daughter.
Diandra

I have a mother that really doesn't care about my pain. SHE says she leaves me alone because i'm in pain and she thinks I want to be by myself. She's wrong. How can you not ask her about her pain. You have to understand her pain in order to help her. Your daughter doesn't need to feel like no one understands her or cares.

I know how she feels. I have terrible back pain and RSD. JustdDon't push her to do things she can't. She is the only one that can answer the question about being able to go to school. No one can push through the pain. It's not that easy. You have to ask yourself the questions you want to ask your daughter. Ask if YOU would be able to go through school with the symptoms she has. You might have the same answer as her. She'll have to teach herself and do the homework at home. It's better then being at school in severe pain.

[QUOTE=catra121;1048806]



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?

Very well put! Most of us don't want sympathy, that would be exhausting for others. Just understanding & awareness of what you said.

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.

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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.

Your whole post was AWESOME Catra !

This quote was exactly what I was trying to get to say in my post, but my brain isn't working. I know what I can do at any given time. Someone can ask if I need help or offer encouragement, but they can't tell me what I can physically do or not do. They need to respect when I say that I can't do something, that day.

I think you're getting top-notch information from these responses. Being newly diagnosed I don't have as much experience with the CRPS as most of the people on here but I have a lot of experience with teenagers having raised many as a mom, step-mom and foster mom.

1. Finz gave brilliant ideas for addressing some very relevant girl issues. In addition to everything relating to pain, she's also dealing with all the psychological growing pains and problems of any healthy girl that age. Is there anyone alive that can say being 15 years old was the best year of their life?

2. Like the others I think talking as freely about her px as she wishes is very important to her mental health. Whenever we wish to set something aside or prevail (even for a minute) over our circumstances, it's essential that we learn how to honestly assess ourselves. By talking to her you can help her learn those skills. There's an old saying you might have heard, "You can't set something down if you don't pick it up first." Also, we know that our emotional state has a direct bearing on our px level and/or vice versa. Who is on a wilder ride than a 12-18 year old girl? How does one unscramble those eggs? That self awareness is likely to be her biggest avenue of study for a while.

3. While reading other fab school ideas given here I remembered a girl I went to high school with nearly 40 years ago. She got ill and behind but she was very bright. She took her GED and then went on to college. It got me thinking of another possible option being to pass her GED and then she could take 1 or 2 online college courses that she could work on her schedule. I don't know about where you live but many community colleges pay students through work/study to tutor other students.

4. It might not be just the classes or px or appearance that's wearing her down. Just the fear of being bumped in school must make it a major stressor. Like driving day in an out on an icy road with bald tires. Exhausting.

5. My advice about school, worthy or not, is to assemble some options for her and watch her eyes when you present them. She might have difficulty sorting that out mentally but her eyes will light up when her soul says yes. I would strongly recommend that some method of intellectual or creative structure be part of the program. If she takes a year off school, would she be interested in music lessons or painting or a science club?

6. If you belong to a church or synagogue or something of that nature, there may be youth groups that would bend over backwards to accommodate her in order for her to participate in fun activities with others her own age. The YWCA might be another place to look.

7. I think inviting her to join us here is a super idea! She'd have a level of support and flexibility that can't be found elsewhere.

8. About Mayo, I'm from Minnesota and we're very proud of Mayo. I have to say I wasn't impressed with their web information for CRPS but that might not be a reflection of their expertise. Sorry I can't help with that. Please report back here if you do take her to Mayo and let us know what your family's experience was.

Holy cow! Did I just type all that? Sorry about that. I guess your love for your daughter is bringing out the love in all of us. Last week I couldn't type with both hands because I'm starting to lose the use of 2 fingers. I didn't have any trouble with them while typing this response. Love for another heals. Even if it doesn't heal the physical condition, it heals something well worth healing. :Heart:

My warmest and sincerest regards to your whole family,
Andrea

I wanted to share this article with you and your daughter with the hope that being able to relate to people more her age who have struggled also with CRPS, gives her hope& determination to fight back with all she's got .

Here is the link: http://www.training-conditioning.com...pain/index.php

She is lucky to have you!!