Narcolepsy Support Group

As many of you know I am a mother of a 12 year old with N. In the last year to year and a half, since diagnosis, he has complained of leg and lower back pain. He has always been a athletic child until now. Over this time he has gained about 30 lbs, and stopped playing sports. He just now is starting to go outside and play a little again. He wants to be excused from PE. I have taken him for X-rays and his Pediatrician. He has been scheduled to see a Dr. at Duke in June. (a pediatric sleep disorder special clinic) His shins are tender to the touch with no reasonable explanation? He is taking Nuvigil and xyrem. Just wondering if anyone else has these issues or has any suggestions.... June is a long way away to live with the pain. Pediatrician has ordered some blood work, Not sure what they are looking for?? Any ideas of anything to ask for in blood tests?? Thanks for any help!!!

I am sorry you both are now having to battle this now after still coming to terms with this dx. I have several other medical conditions that cause chronic pain so I cannot be of much help. The blood work is pretty standard when any testing starts to rule out illnesses. The probably did a CBC complete blood count. I am sure checked for Lupus, Lyme and RA. Don't go by me or be nervous when people complain of chronic pain those are standard tests, once they are ruled out they can move on to more elimination. Is it possible that it's growing pains? Some kids get them way worse than others. Being unactive after being so active could be the problem as well, I do hope that's all it is. My thoughts and prayers are with you both. Hugs, Stacey

i have never taken nuvigil, but i did take provigil, which is the same drug exxept nuvigil is supposed to be more active. i only took xyrem for a short time in its clinical trial stage. based on my experiences, i would research the meds in detail, esp the nuvigil. according to my dentist, provigil destroyed my teeth and teeth and bones are similar. remember that i am not a dr and my info can have flaws in it.i quit taking all meds because of the side effects. my problem with provigil and nuvigil is that if my teeth were destroyed to the point that it cost approx $80K to fix them, what did provigil do to my bones?

You are saying your problem with Provigil AND Nuvigil. It's kind of hard to make comments/reviews on a drug you don't want to try because of results with Provigil. I had the same problems with Provigil except no tooth decay I have only heard one other person say that. Nuvigil has been different for me it's been great and has helped others. When it comes to meds anyone should talk to drs about the good and bad. I just give my experience with meds I have taken through trial and error. Everyone reacts differently to meds.

Post edited by: smd, at: 04/08/2013 07:05 PM

Thanks everyone! The doctors have mentioned growing pains. This started last august, shortly after Narc. dx. As a Mother I am afraid of what it could be. He has a appt at Duke Hospital in July. I am hoping to get more answers from them. Im going to research the side effects of his meds though.... Maybe that could lead us to something.I'll check it out and let you all know if I find anything. Take care!!

Fibromyalgia is what I have been afraid of! It is a constant ache in his lower leg/shin area. It is tender to the touch and has kept him from being active. He feels like it is deep down? Hard for me to say because I am not the one that has it.... Does that sound familiar to you missa?

My pains also started as an early teen and I was also dxd with Fibro but I wouldnt start worrying yet just let the drs do their thing and try not to do too much searching on the internet yet because that will only increase your concerns more. I used to do it myself, I suffer from several medical conditions and during testing I would google the symptoms and come up with the craziest illnesses. Its best to wait it out, if you dont feel you are getting anywhere with them then step up and be his advocate of course but at first see what they come up with. I was reading an article the other day that Narcolepsy is linked to chronic pain as well if I can find it again I will link it here. Best wishes to you and your son. Keep us updated. Hugs

Yeah but they even say the reason its so many women is probably because men are far less likely to come in and complain of all over pain and men very rarely go to the drs complaining of pain at all so its not facts its just a study, there are alot of men out there that probably do have it just not confirmed dx's. We have 2 Fibro Moms in our group and their little boys are 10 and 12 they suffer terribly.