Wow, it is interesting seeing other storys of teenage girls and how they are affected by this. My daughter isn't as bad as she was 2 years ago, and we certaily don't want to go back there! She is a fighter, though, and does as much as she can even if it means she knows she will pay the consequences. But, I can't blame her, she wants to be a teenager! And, she hardly does anything on weekends with friends or anything anyway because she is always so tired, so when she feels up to doing something I usually let her do it, but with restrictions. I won't let her stay out too late because that is very hard on her. Every time she stays at a friends house and they stay up really late, she suffers for days.
A bit of an update~the ADULT POTS dr. got back to me and said he would see my daughter! I felt like I just won the lottery! I had been through so much in the past week trying to find someone to see her. She also has an appointment with a therapist (an M.D.) for manual therapy for her back. Do any of you have experience with that? We haven't gotten the results of her lab work that she had done, though. I will call tomorrow. Because we haven't heard, it makes me assume everything was fine. Of course.
Also, I contacted her rheum and he didn't want to see her--said it sounds like she has a pain problem--you THINK?? I said I suspected FM and he said they (rheum) see patients with "inflammatory" back issues. Well, we are pretty sure it isn't that, so when I asked WHO would diagnose FM, he said--are you all ready? There isn't any diagnostic test to diagnose FM!! He said it is mostly ruling other things out which we pretty much have in her case. But, he said we could go back to our primary and they could do a referral to the FM Program. Oh great, I thought, go to this 2 day thing and listen to how you just have to learn to live with it?? I said, thanks, but she has an appointment with her POTS dr, and we will discuss it with him. I will also bring it up to the PMR dr. and see what he thinks. Do your girls or any of you have a lot of knots in your back that are painful to the touch?
Kirsten's mom-Did the Cymbalta take long to notice an improvement for your daughter? What did it help most with? I am more comfortable with that than Lyrica because I took Lyrica and had bad side effects. Kim, I am so glad that it has seemed to help your daughter, though!! Everyone is so different with medication response. My daughter takes a beta blocker, but that is for her POTS. And, again, POTS and FM are often intertwined. I am very intersted in her tyring Cymbalta--although it is expensive!! But, whatever it takes, right?
Kirsten's mom, I am kind of surprised your daughter's dr. wouldn't let her go back to school. With POTS, they demand it-well, her last dr. anyway. They said the only reason to stay home from school was if you were vomiting or had a fever. Guess it doesn't matter if you can walk, are in tons of pain or dizzy! LOL!! Oh, and the whole psychological thing!! We have kind of been there too, but they found out that she WANTS to go to school and be a normal kid and doesn't get any kicks out of being home in bed all day! I had one nurse tell me she wouldn't allow her to have a computer or cell phone if she was home. I told her straight out that there was NO way I was going to take her only link to friends and the outside world away from her. I said, THAT would cause depression in a heartbeat! They just didn't believe that she felt so horrible because there was no "test" to really tell!
Sassy, where is your dr.?