Debbie, POTS symptoms and FM overlap along with CFS. The good thing (lol) about POTS is that there is a way to diagnose it!! A tilt-table test is done and you heart rate goes up 30+ beats a minute just by being put upright. My daughter was 80 lying down and 135 when put upright (it doesn't happen right away, though). Basically the blood pools in the extremeties and the hear pumps faster in attempt to get more blood flow to the brain. That is what causes the fatigue, dizziness and concentration problems (plus others). It is an autonomic dysfunction.
One of the biggest obstacles I feel my daughter faces is her age. She is still considered a child and I don't feel most doctors take them seriously (hence looking for an adult dr). Because they don't demand help, and there is no diagnostic "test", they can easily get brushed off. Well, I have had it and I KNOW there is possible help out there, so it is up to me to be the "mommy bear" and find it for her! Because she is still able to go to school (which she wasn't when first diagnosed 2 years ago), and isn't failing, they seem to think it is okay. Well, she is SO fatigued, can't think straight for anything (often says the wrong words), dizzy and miserable. She is a 4.0 student (but falling behind in one class), REFUSES to let this get her down and fights it really hard. Therefore, I feel she is penalized. In fact, she plays sports and was sidelined due to her health for a couple years, so as long as she can stand upright, she plays no matter how much pain she is in. Comes home in tears and collapses sometimes, but she won't give it up. But, if there is help out there, why should she have to suffer on a daily basis? I worry what this may do to her emotional state, and she sees a psychologist (who says she deals really well) from time to time just more or less to monitor her, but I don't want to just wait until she has a breakdown and then try to find help! You all know how not feeling well can wear on you emotionally. She has 2 "diagnosed" conditions I also worry about how another one will affect her. But, I deep down think it will validate her and give her hope to finally feel better!
Sorry to rant, you can probably sense my frustration!
Chutz, you are probably right, she may need to go back to her rhematologist. She was there for her back and costochondritis and the only thing they wanted to treat her with was NSAIDS and said it was "probably" due to her UC (which she was on medication for, and they said it must not be RA for that reason). But, they didn't check tender points--which I am sure she has because they are ALL over. I barely touch her neck, shoulders and back (which have big knots all over), and she is in a lot of pain. So, needless to say, I wasn't that thrilled with her rheumy. Maybe I just need to go there and ASK if she could have FM and for Cymbalta for the pain?!?! I just worry that sometimes doctors are perhaps too quick to say FM or CFS when there could be something else going on. Also, that there is no "cure", so basically learn to live with it.
What I really hope to find is a dr. that works extensively with both POTS and FM. We aren't afraid to travel if that is what it takes.
I don't remember the ins and outs of the forum, but can we email or private message each other?
I had this long reply to post and accidently erased it. Now I am just plain too exhausted to write anything. I will get back to you tomorrow! Thanks for the replies!!!
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.?
Kim, we have been dealing with this for a long time, but it really came out when she was diagnosed with POTS 2 years ago at 15. Because they apparently overlap and we still don't have a "diagnosis" of FM, it is really hard to say. When she first was dx with POTS, she couldn't go to school. She couldn't do homebound either because she was so sick. The school was great, though. I managed to get her an IEP (also had a 504 right away because of her UC), and that has helped, but luckily she hasn't been as bad since as in the beginning. My daughter really doesn't go to "school" full-time, but is still getting in full time+ education. The biggest single think I think is that she doesn't start high school until 12:30 and only has 3 classes-until 3pm. She is also doing PSEO at the local college and has one class on campus 2 days a week 10-11 Monday and Wednesday and takes 2 others online. She is so fatigued all the time and has difficulty concentrating, that I don't think she could ever handle an 8-3 day every day. Makes me worry about the future for her (especially as she has very high goals of going to med school), but there is a good chance she could overcome the POTS.
One of the hardest things lately is that she is so sensitive--emotionally. I can hardly bring up the school work subject. She is behind in one of her classes and I feel she could be putting more effort into catching up, but then again, I have to remember that it is probably a huge struggle for her to just keep going to school and keeping up as well as she can. It is just so hard to find that balance as a parent!! I also worry that the teachers just don't get it either--especially college-where her class she is behind in is at!
Kelsie, if you want to email someone and if they have their address in their profile, you can either go to their profile or click on the little envelope by their name on any of their posts and it will pull up a "write mail" with their address already in place. Hope this helps.
Hi Kim. Glad to hear the Ambien helped your daughter. What do you mean by her sleep schedule flipped around? Is she not falling asleep until really late? What kind of dr. did she see?
Yes, my daughter has a TERRIBLE time in the mornings, but she also has other conditions that contribute to that. She goes to bed plenty early and sleeps plenty late, but I'm not sure if she isn't sleeping well or if it is her health that is causing such terrible fatigue or a combination. She sees sleep medicine next week.
I was able to get her into the adult POTS dr. Not sure how much experience he has with FM, but because they overlap so much, I am hoping so! He is a neurologist by specialty. It is certainly worth checking out, but it won't be for about 3 weeks.
Yes, she is a junior. She pretty much has figured out where she wants to go and we have visited and met with people there. As long as we can keep her health somewhat under control, she will be fine as far as college goes, she is a very good student. Because she is doing some college now, she is banking up her credits so to speak, so she can take a lighter load in college if needed.
She really doesn't do much other than go to school, but she has prom tomorrow and is in bed already--she will go no matter what. I KNOW it will not be good for her on Sunday!!! I really hope she decides to come home and rest rather than go to the after-prom party. But, I will leave that up to her, she will have to learn how to manage. I don't want to tell her she can't go because of her health. It is hard enough being a teen with chronic illnesses without me reminding her and almost "punishing" her for it. She will make the decision and have to live with the consequences. That is how they learn, right?? As a parent, it is so hard to find that balance. Ugh! I can't seem to find the "raising your child manual" she came with!! She has 3 older, healthy brothers, but this is a whole other ballgame with different rules!!
I hope your daughter gets caught up. Mine is still behind and every time I bring it up, she gets upset. She has such a difficult time concentrating and I know she feels terrible. Again, where is that balance?? I want to be stern with her and tell her she HAS to set goals on getting it done, but she is SO darn sensitive!! I'd MUCH rather be the one sick. If I could only take it from her!!