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.

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

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.