erikainorlando Posted May 3, 2009 Report Share Posted May 3, 2009 Hi.I went to see my EP yesterday. He is new on the case but a very nice man. I saw him for the first time a month ago. I was having a great day yesterday - go figure. In the last month I have had about 2 days when my hr was pretty good (90-110) standing and yesterday was one of them. I said to him "Oh...yes...I think all in all I am doing better". He told me I looked great...and my hr didn't jump that much on standing...and he thinks I am getting better so he doesn't want to change the meds that much other than adding midrodine. I wanted to kick myself going home. I probably am doing better than back in Feb...but I can't work. I can't do more than 2 - 3 hours of activity in a day. I have to rest before I can take a shower. I have to sit to dry my hair. Many times I can't even throw chicken in the oven for dinner. And evn tho yesterday was a good day...most of the time this is notthe case. I am a wreck. I don't know why I am so afraid to sound complaining to the doctor. I am probably afraid that he will say well I don't know how to help you or worse yet...I havfe your hr pretty controlled on the meds so why are you complaining... Does anyone relate? Thanks....Erika Quote Link to comment Share on other sites More sharing options...
bizbiz Posted May 3, 2009 Report Share Posted May 3, 2009 Yes, I have done this too.By the time I got an appointment to see my first POTS specialist, there had been a time lapse of about 4 months from onset of POTS to appointment, and by this time I was feeling a lot better. Even though I was still having symptoms everyday, I didnt know enough about this illness to realise that it was something that I will be dealing with for a very long time, so I naively thought that I was getting better and would soon 'recover' and be back to normal. So at my appointment I told the doctor I was getting better with time, and she basically sent me home, telling me that if I was getting better there was no point in doing any further testing or trying out any new meds.When I got home I realised that I was back at square one, and that I had waited months for an appointment that I had just wasted. The next time I had an appointment (with a different specialist), I brought in my 'symptoms list', because I think sometimes you just get used to the adjustments you have made in your life in living with POTS and you get used to your 'new normal', so when you are having a good day or a good run it doesnt seem so bad.Gosh, I hope this makes sense...? Quote Link to comment Share on other sites More sharing options...
summer Posted May 3, 2009 Report Share Posted May 3, 2009 I also have had that same urge to kick myself on the way home from the doctor's office. The truth is that often I do feel better - relatively speaking. If I am not at work, able to rest whenever I need to, and control my own day and level of activity I feel much better than when I over exert. I am about about 2 years into POTS now (at least this more severe POTS), with my diagnosis for about a year. I think over time we get so much better at knowing our limits and listening to our bodies (when we can), that whether or not we are conscious of it, we do all we can to feel better. But over and over we find out that "better" is not neccessarily "well again". I have been the same as you over the past 2 years - not wanting to complain to my doctor all the time. I am generally a positive person and I like my doctor. As strange as this sounds, sometimes I feel a little guilty for not getting better because he has tried very hard to help me. Not only that, I really do want to be getting better. So I think sometimes I give the wrong impression and this does not help me in the end. I am learning this slowly. I find it hard to answer his question "So, how have you been doing?" I want to be positive, but for my own good I must be truthful. Quote Link to comment Share on other sites More sharing options...
bjt22 Posted May 3, 2009 Report Share Posted May 3, 2009 I have this problem, too. And its been going on for YEARS.I'm normally a very private person. I'm not someone who ordinarily volunteers much of anything to anyone. I have to admit that I'm also biased against those I view as chronic complainers/crybabies. Part of me just isn't going to be that way. Couldn't go in a cry in a doctors' office if I tried. I don't show "distress" easily...this has gone on since I was a child. My mother never knew I was sick until I was almost dead. I delivered two of my own babies. So, part of it is that it's just a facet of my personality.At this point, I've also been dealing with this stuff for a LONG time. Yes, I've been worse. I tend to discount a lot of really crappy stuff that's happening to me because I know that it's not as bad as it can be. I'm just used to feeling bad. I've accepted some things, so I rarely talk about them. They're just a part of my existence. Had this happen at a doctor's visit just a few weeks ago. Had just gotten back from a short trip, and as usual, I was swollen 15 pounds past my normal weight and my lungs were pretty gunky with fluid. That happens. I do mention that it happens, and then this-or-that doctor is shocked when lo and behold, they discover it for themselves. Then there's the disbelief, and I'll admit, I can be a bit cranky because I'm verging on being in "I TOLD YOU SO" mode. I think I just can't manage to look/appear sick enough. Now, while I've accepted that I'm like this, and while I'm accepting that I'm not really going to see a lot of improvement in my condition, it would be nice to feel every now and then as if there was more understanding that my quality of life is pretty low. I accept that it's my responsibility to share this with health care providers, and I try...I really do try....but whatever it is I'm doing is not getting across. Ofcourse, it could just be that there really is little more that can be done. I understand that, and I accept that, too....but you know, part of me would like to just hear providers come out and say this once in awhile. I know that can't be enjoyable for them. I wouldn't like doing it either...but a little intellectual honesty would go a long way. Who knows? If that happened, I might even be better able to more honestly discuss what my life is really like. Quote Link to comment Share on other sites More sharing options...
all4family Posted May 3, 2009 Report Share Posted May 3, 2009 Hi,I do this all the time. I think that I am worried that the doctors will say, (or think) that I am exaggerating my symptoms. Before diagnoses I had a doctor (or probably two or three tell me just that.) Or the big one, "it's in your head or mental". So I have learned to play down my physical symptoms. Also I think sometimes I do it because I just can't take much more as far as testing, and medication, and although I want answers to the question, if I choose to refuse the treatment then the doctor (sometimes) becomes angry, and will refuse to treat me. I am not going to have a EGD done this next week, because I just can't tollerate what happens to me on meds. I am expecting the doctor who ordered the test to get very angry with me, but I just can't do it. When I got my diagnoses I thought they were going to want to try a bunch of meds on me, so I told the doctor I think I am getting better in general. I also said I don't think I am really fainting. (pinochio) He looked at me kind of funny, and I don't think he really believed me. This was probably the first doctor that didn't accuse me of exaggerating! But instead tried very gently to tell me that I could, and very well may have this my whole life. The worse part is, is that I don't go back, and tell them what is going on, because all they can really offer me is meds. But I always walk away kicking myself too. Because I always have more questions, and wonder well is this caused by this? This is such a hard disease to deal with, and treat. It is hard for us to know what to tell our doctors. One day we will think there it goes I am getting better, (and doesn't it always happen on the day we are going to the doctor?!) and we really want, in our hearts to feel like we are getting better. Only for this ugly thing to come back and smack us down again. It helps me to journal or write things down as I go, so I can say yeah I am doing really good today, but just 3 days ago I was so bad that I couldn't stand up. And to take that journal with me just in case I draw a blank when I am in front of the doctor. (and I usually do!) Don't be too upset with yourself. Even if you had told the doctor he may not have listened. I think a lot of doctors (and I am not sayint this one. I don't know anything about him.) Have decided how you "feel" even before they walk in the room based on what they see, (or don't see) on your chart. You will get another chance. Suzy Quote Link to comment Share on other sites More sharing options...
morgan617 Posted May 3, 2009 Report Share Posted May 3, 2009 I don't, they get their money's worth from me, but my son does it all the time. He says how he feels at that exact second, not how he feels over all. I have no idea why....morgan Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted May 3, 2009 Report Share Posted May 3, 2009 Hello,I do something similar. I don't say that I am feeling better, but I muster up all of my energy and act like I am feeling much better than I am. I hate that I do this because I know that the doctors don't get a good idea of how unwell I feel and how disabled I am by my symptoms. It is something that I am trying to stop doing. I am the same way with my friends. I'll tell them that I don't feel well, but when I see them I try to hard to act so happy and cheerful that I am completely wiped out and crash after visiting for an hour. They only see the "show" and not the crash. I think that this is extra frustrating for us because many people already do not take seriously the extent of our symptoms. Let's all make a pact to be more honest with the doctors and show them what we really deal with everyday!~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
Katja Posted May 3, 2009 Report Share Posted May 3, 2009 I do this all the time. most of the times I've broken and been "honest," I got treated like a hypochondriac. unfortunately, I've often found that I get more out of doctors when I tell them I'm "fine" - same way I get better treatment if I only complain of a few symptoms, rather than the whole gamut. generally, if they can't see it, it won't get taken seriously, anyway. Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted May 4, 2009 Author Report Share Posted May 4, 2009 Thank you all. I really appreciate your comments!I do feel guilty that I am now better and wnat so much to be better. I had never had the expeinece that docvtors didn't believe what I was saying until this whole POTS thing. I feel like it is an "invalid" illness yet I am so incapacitated. It is so different.... I feel afraid even with this new doctor that he will give up on me or not believe me...even tho I have had the positive TTT etc. I am sure he is compasionate....i really think he is but I have had such awful experiences with doctors since I have had this. I even have friends that look at me like "why aren't you getting better??". My boyfriend and kids are great (although I am sure they are frustrated at times too) but I hate needing them to help me... I am very grateful for all you being there....erika Quote Link to comment Share on other sites More sharing options...
futurehope Posted May 4, 2009 Report Share Posted May 4, 2009 I think we get so used to denying reality on a routine basis in order to "push" through a day, that we are usually "in the mode" of denial on a routine basis. This is of necessity, since we would stop in our tracks and do nothing if we "listened" to our bodies. Our bodies do not work properly, but we do the best we can. We're all heroes in my book.Now, as to what you tell a doctor, whether it's reality based or not, my neurologist has found a way around that subjectivity... When its my turn to go back into his office, he puts a blood pressure cuff on me while I'm still seated in the waiting room in order to take my blood pressure/heartrate. I then go back to his examination room and he has me continuously stand and he takes my BP at intervals. He can usually tell by my heartrate and blood pressure readings how I'm doing. IOW, he uses the objective data from the blood pressure cuff and pulse, as well as what I say, to determine my status. Quote Link to comment Share on other sites More sharing options...
MelissaCrystal Posted May 5, 2009 Report Share Posted May 5, 2009 It *****, because sometimes the postural part of my condition is "better" on the visit. And of course they aren't going to believe me that when I go home, it's worse again. It's different with the weather, with what I ate, with how much activity I just had, SO many things change that symptom. So sometimes my HR only goes up 25 bmp, and sometimes my BP doesn't drop more than 5 degrees. I get so angry, and I feel like I shouldn't be angry about that---I should be happy that it could be a good sign! But I need the doc to know what I'm experiencing at home and sometimes I fail to do that. I'll always keep the medical record that showed I went from 65 to 120 BMP upon standing. I haven't seen that happen at a doc office after that in a long time though. Usually my HR is already high when I get in there so it goes from 90 to 105 or something, which is barely an increase. Oy.....I'm just really scared that when/if I pursue disability they'll use this against me. I know I can work, but only on the right days, which is unpredictable and often leads to me crashing the day afterward if I work that day. Blaaaah. I hope my doctor helps me out there if I need her. Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted May 5, 2009 Author Report Share Posted May 5, 2009 Melissa..Yes...that is exactly it. My hr used to always and I mean ALWAYS go over 120 when I stood up (an increase of 30+ at least). Now...I am on toprol and an SSRI and my hr on occasion is obviously lower on them. And......my hr seems to be a little more managable these days..i don't have to take as much toprol and i have had a couple of days that when my hr was ok...even b4 I took the toprol (I was having one of these days when i was at the docs..). So...I don't want to complain to the doc if my hr seems more manageable. I had a doc's appt with my neurologist today (she knows nothing of POTS but treats me for post Guillain Barre from 2001). She said....but Erika you look so good and better. Thank God my boyfriend was with me...he is very bold and said "She LOOKS ok today...but she is not ok. She has days she can barely function". Maybe I should try to bring him on all appts ! Thanks!!Erika Quote Link to comment Share on other sites More sharing options...
futurehope Posted May 5, 2009 Report Share Posted May 5, 2009 I'm just really scared that when/if I pursue disability they'll use this against me. I know I can work, but only on the right days, which is unpredictable and often leads to me crashing the day afterward if I work that day.As for working, a big part of being a worker is being predictable. Yes, most of us can do certain things on "good" days. It's the fact that we are unpredictable that makes us unreliable as workers.As for the doctor seeing me on a "good" day, my doctor has seen me on both "good" and "bad" days. On bad days he will see a narrowed pulse pressure after I've been standing a while. After all these years, he knows better than to think I've improved permanently. Good one day. Bad the next. He is familiar with POTS and understands. Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted May 5, 2009 Report Share Posted May 5, 2009 My analogy is of a broken leg. People ask "how is it ?" Its better (those drugs don't hurt either). After the cast itch passes they ask how is it ??? Its alot better ( those drugs don't hurt either)............ You get it. We are conditioned as a former "Catholic school girl" this is forever part of the girl. Even ordained as different denomination, still Catholic school girl. !!!!!!!!!!!!!! M Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted May 5, 2009 Report Share Posted May 5, 2009 I know my docs know my life is hard, so i tell it like it is so everything is documented. Especially if you're disabled or about to apply for it you need documentation. You have to be your own advocate. Sometimes, I find mistakes in the notes and I have to make the dr change them. Everyone should carry around your last dr.'s appointment notes in your back pack or bag with med list in case of an emergency and tell who ever you go out with it is there as it could save time and your life. Quote Link to comment Share on other sites More sharing options...
Lgamez3 Posted May 6, 2009 Report Share Posted May 6, 2009 what is an EP? Quote Link to comment Share on other sites More sharing options...
futurehope Posted May 7, 2009 Report Share Posted May 7, 2009 what is an EP?I think it stands for electrophysiologist. Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted May 7, 2009 Author Report Share Posted May 7, 2009 Yes...electrophysiologist. The folks that diagnosed my POTS. I didn't even know they existed b4 this whole experince!!! Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted May 7, 2009 Author Report Share Posted May 7, 2009 Yes...electrophysiologist. The folks that diagnosed my POTS. I didn't even know they existed b4 this whole experince!!! Quote Link to comment Share on other sites More sharing options...
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