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ritzbit
10-26-2010, 12:35 PM
So I went to see my rheumy yesterday and she blew off everything I had to complain about from the past few months and I don't know if Im just over reacting. I've been noticing that my heart is beating really fast a lot lately and that when I do any kind of physical activity it gets about a million times worse (not exaggerating). It starts beating SOOOO hard and so fast and I feel like I cant breath. And my pulse rate when Im just sitting is way over 120 (I stopped counting there). And I tried to explain this to her. She didnt even check my pulse rate herself or basically do anything. Then she basically told me I was really out of shape and just needed to exercise more. Im 18 and 125 lbs I dont think Im so out of shape that this should happen when Im just walking around school or going up some steps. But she's the doctor, thats what everyone said when I got mad that she blew it off. Anyone have any input?

SandyR
10-26-2010, 01:23 PM
yes, she's a doctor, but she's not you. only you know how you feel. can you call your primary and tell them. if you can't get that doctor to listen by having a conversation then shout, scream or just plain take her hand and hold it over your heart and jog in place. Anything to get her to close her mouth and open her mind and ears. You are your own best advocate. Also, do you have a pulse monitor? You can find one pretty cheap if not and you can track your pulse and physically show her the numbers.

Bonita
10-26-2010, 03:15 PM
Sandy is right and you have to be your own voice when you know something is wrong. These doctors who just pass things off as being in our minds should end up on the other side of not being listened to. Bonita

serand4
10-26-2010, 04:21 PM
GET TO ANOTHER DOCTOR! A whole lot problems started with me having an elevated heart rate. Believe it or not, this had gone on for a long period of time and it was the nurse that brought it to my attention. Mine got as high as 144 but ran normally at 110 to 120. I was put on Bystolic and it definitely helped. However, about three weeks later I got shortness of breath and chest pains that turned out to be blood clots in my lungs. Go to a different doctor, demand a cat scan. In this strange world of Lupus I've found out that you have to be a very aggressive advocate for yourself. I was in the ER two nights in a row with sever breathing problems. The doctor of the day immediately wanted to scold me for the number of medications I'm on. I told her that I heard that every time and yet no one can find the one to drop off. Not only that, I left with four new prescriptions. The next day at my pcp I left with two more scripts. Anyway, go with your gut, don't EVER let them talk down to you. If you're just 18 and just starting this, you need to put on your thickest skin, do your homework, talk to your local Lupus chapter and while you can be polite, hold your ground!

ritzbit
11-04-2010, 08:29 AM
Mine is usually above 120..I dont like keeping up with it because Im pretty sure its actually higher and that makes me nervous. My doctor schedueled an echo, but not for over a month. It starts beating so hard and so fast out of nowhere. Walking from one class to another is enough to get it started. And I am sooooo tired. I basically go home, sleep, wake up for dinner, then go back to sleep. I cant get up and motivated to do anything and its really getting me behind. All I want to do is sleep. Its ruining a lot of stuff for me right now. I cant concentrate on anything. Im behind with all my college applications. I dont know what will help.

froggal
11-04-2010, 10:18 AM
It is really tough when docs dont listen to you! It is really important to find a doctor that will actually hear what you are saying. Also, the fact that you are young should be more of a concern as to what is causing the problem. I hope you find the problem and I hope they fix it soon! God bless you . . . hang in there!!

SandyR
11-04-2010, 02:05 PM
If it were me, I would call that dr's office everyday and ask if there are any cancellations and to please put your name on the cancelled list and I would stress each time that you are really concerned something is physically wrong with you at the moment and you feel that a month is a very long time to wait to have your heart checked out. Hopefully that would get you seen faster and taken more seriously. Also - don't be afraid to go to the ER if you feel that it is bad enough that you just can't wait anymore. When I had a bad flare last year I was looking for a new dr. No one had appts anytime sooner than 6 weeks and I kept telling them how sick I was. Finally I went to the ER and called the new dr and wouldn't you know it - they were able to suddenly squeeze me in the next day.

ritzbit
11-04-2010, 05:58 PM
The only time I've been to the ER is when I broke a few bones when I was little. And I wouldnt want to freak my mom out because she would start panicing if I wanted to go to the ER. I keep freaking myself out when I search "lupus and high pulse" or "lupus and the heart". I just dont want it to be blown off because my heart is kind of an important thing to be working. My family just wants to assume that my doctor knows what shes taking about so I need to stop worrying.

magistramarla
11-04-2010, 09:11 PM
Ritzbit,
You have often complained about this doc not listening to you. Now that you are 18, is it possible for you to find a new doc on your own?
Since you are so young and not overweight, the "out of shape" excuse sounds like a cop-out to me.
Hugs,
Marla

SandyR
11-05-2010, 06:25 AM
I just dont want it to be blown off because my heart is kind of an important thing to be working. My family just wants to assume that my doctor knows what shes taking about so I need to stop worrying.

First - you are right your heart is the most important part of your body that you need to have working followed by your brain. And not wanting to inconvenience someone else isn't helping you anymore than the doctor not wanting to be inconvenienced by listening to you. If you are really that concerned, go. I am sure your family would feel better knowing you got checked out then knowing you are living in pain and fear so that you don't upset them. This is your health we are talking about. It is serious enough to go to the ER when it is needed. Trust me - I have only gone to the ER twice in my life and I am about twice your age. When you need to go you should go, especially since you are a fulltime student and that means you probably are still fully covered under your parents insurance. If you feel that the ER is not really where you need to be then I think Marla has a good suggestion in looking into other doctors. A fresh pair of eyes is a good thing sometimes.

Secondly - your family, as much as they love you, is simply not you. I have a sister that does to me what your family is doing to you - tells me how I should feel when I tell her how I am feeling. It doesn't help that she is a nurse and therefore thinks she knows all there is too know about all my medical conditions or that she thinks that I actually like sitting around and that's why I don't excerisize the way I used to. She's never going to get it as often as I try to explain what crippling pain and the spoon theory are. It makes it worse that she also has a thyroid condition that she is doing very well with and seems to think that because she is able to overcome her conditions presto-chango I should be able to overcome mine. I am going off on a bit of a tangent here but the point is - our family may love us, may support us, may want to help us and want what's best for us. They may even think they understand all the inner and outer workings of what is wrong with us and how exactly we feel emotionally and physically. Their ability to do things may make them think we should be able to do them too because after all we just don't look sick, now do we? but the fact is - they don't really get it. A lot of them want to get it. Some of them try to get it. Many of them have accepted the fact they don't get it and some think it's us who aren't getting it. It doesn't matter because they aren't you. You know how you feel, how you are doing, what you are thinking and what you can and can't do. You are a smart, level-headed woman who clearly understands her own body very well. For your family to "assume that your doctor knows what she is talking about" means they are blowing you off. I'm sure they aren't doing is maliciously, but they just don't get it so you can't really rely on them to fully understand your health and be as concerned about it as you are. Now that you are 18 and old enough to go to the doctor by yourself you don't really need them to understand fully either. It would be great if they did, but honestly you knowing yourself is more important.

And now I will take off my lecturing hat. Sometimes the stern teacher talking just comes right out of me - but please understand, I just want you to do what's best for you and to understand that only you know what that is and only you can take that action.