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.