Hi there!
I was 11 when I was diagnosed and am now 25. I had a crutch in junior high school and remember the hell of that. And the first time one of your friends asks if you are contagious. It is really hard dealing with this when you are that young. Puberty and pain? There's an evil combo!
1. Make her move. Maybe not a lot, but a little walk with the family after dinner. Mine started in my knee too, and spread downward. And part of the thigh now. But moving helps- it sounds like hell, but it really does.
2. Anti-depressants. I was clinically depressed at that age and I wish like crazy my parents had put me on anti-depressants. I don't think I would have such issues with depression now if I had been treated early on. It will improve her quality of life immensely. And the anti-depressant do have an effect on neuropathic pain.
3. Meditation or yoga. These things can be really really helpful. Check out a school of thought called MBSR- Mindfulness Based Stress Relief. I truly believe this was the single best thing I have ever done for myself in regards to improving my quality of life and how I deal with pain. (And I've had 20+ surgeries for my SCS- I was really desperate for a long time.) This changed my life. And it's not a cult! (I just realized that my praise sounded kind of like an infomercial.)
This is just a start. What kind of medicine regimen is she on? Lots of neurontin I hope. At that age I was on that and clonidine and pamelor. I believe that one of them was a patch that I wore to reduce allodynia. Although I think that I like topamax better than neurontin now.
This also sounds kind of strange but I stopped eating artificial sweeteners and it really helped my pain.
The big thing is not losing hope. And it can be really bleak at this age. That's why treating the depression is so important. It changes how you relate to the pain. At that age I also used to be really firm about the idea that the disease and I were separate- we weren't the same at all. This made everything such a battle for me. Once I tried to reconcile the idea that we both shared the same body, I started being a lot more gentle to myself. And because we both shared the same body, we were part of each other. Hating the disease meant hating myself. That doesn't mean that you can't fight the disease- it just means less self hatred. Which makes things a lot better.
If she wants to talk to someone who has navigated this rocky road- please, be in touch. I tutor girls her age and I make a pretty good mentor
.
Linnie