I hear ya! Man, what an example! Sure, I wish I could get up and ride my bike too! What a dirtbag! I am so tired of people that don't understand. I wish there was a doctor's office where we could all go that had doctors in it that have had a blood clot. Then maybe we could be heard. Well with my experience with those kind of doctors have taught me that if there is one doc that ignores you, try try again. My therory is that eventually someone will listen. Now this hasn't happened yet for me, but I am trying to be positive:) I wouldn't let him make you feel like that. If you feel something is wrong, than make sure you get checked. I have had really bad SOB for the last few weeks and I am getting a CT scan to check. Please keep me informed. Wish you the best of luck:)
Carrie

Stupid comment, indeed. Well, he blew past the SOB part and addressed the fatigue part in a rather condesending way. Personally I think women get the brush off when they complain about fatigue to their docs period. It's attributed to the stress of life, hormones, work, family , depression, blah blah blah. Pisses me off.

EXACTLY!!!!!!!!!
I've learned most doctors just want you alive (to pay that bill) lol, Quality restoration is not on their agenda. We know what you mean. I still have some SOB stints. A co-worker of mine had a PE 5 years ago and he still has anxiety attacks around SOB. I also sleep 3 hours more per day than ever before in my life. This may be our exclusive membership handshake...... lol only those going through it understand.

What a shame he blew his exemplary job of explaining things by coming up with something dismissive. We all remember that doctors are so limited in the time they spend with patients and rarely seem forthcoming with information. In the two-and-a-half year oddysey this has been, the only health pros who seemed to know anything and actually share it were a hematologist and a doppler technician. For everything else that had to be known, I imagine it must have been a tedious library-based process before there was Internet research.

Even with having seen the SOB bouts come and go for this long, they are still worrisome when they set in.

I definitely feel for you TNT with that comment, because it is dismissive, it doesn't have anything to do with just not feeling like you want to ride your bike because you're still tired. And for me, I find the two things to be connected, my fatigue is much much worse when I have SOB. I even specifically say if I say I'm tired whether I mean normal tired or what I call "black hole tired", which is that I say I feel like while I have a visible outside shell of a person, I am empty inside - even worse than empty I feel like I have some force sucking the life out of me. It is a fatigue which I certainly never felt in my entire normal life prior to PE, and it's a shame there's no way for the doctors to at least understand that they don't understand. Brushing it off like that does indicate that it's just an issue of mental fortitude and that if we push through it everything works out. Well I've struggled with the fact that it's not like that at all. I'm used to working hard physically and pushing myself beyond what I thought were my limits, but eventually my body responds and gets stronger and what was once hard becomes easy. This post-PE fatigue is nothing like that, because rather than my body adjusting to it, all my body does is come crashing down if I push myself too hard, and I can't stand that!

Well, there's my little rant. Not much helpful either, but at least you know that we here understand!

I think the really annoying part is that he seems to think I'm new to being alive. I mean, I've been around for 35 years, I'm pretty sure I know what it is like to be tired and/or unmotivated.

And, as I've been in this body for 35 years, I also know what is normal tired and what isn't. ShilosMommy ... I love the term "black hole tired" cause that is really what it is.

*sigh* This still annoys me, when I think about it.

That kind of dismissive thinking is not only annoying but it makes me wonder how many doctors really "get it" about the kind of fatigue that comes while living with PEs. I've said before that I have two doctors working with me and the two are probably equal to One good doctor. They have different issues that they don't understand and they have different strengths.

I am glad, in a perverse way, when I hear others here say that this is a new kind of fatigue and we have to listen to our bodies or crash. It would be easy for someone to tell me that it's because I'm 72 but I was always active before spinal issues and PEs arrived and this is a whole different kind of feeling to deal with. It is also depressing to need so much sleep and to be exhausted so easily.

I agree too that women tend to be dismissed as just naturally being more neurotic and stressed. The only really empathetic professional I deal with is my pharmacist!! He is the greatest!

Good luck Carrie with the CT scan! Hugs, Cindy

Yeah it was a terrible comment i have to agree with everyone the fatigue is terrible some days can be better than others, i am supposed to ride my exercise bike 5 min a day that is really not much at all but yet i dont have the energy to do it all the time or even want to try and yet when i tell my doctor she just tells me to get motivated, she makes it sound like i am the laziest person in the world in fact some of my family thinks "Oh it cant be that bad" Well it is and until you walk a mile in my shoes dont judge me.

Hang in there thats about all i can recommend i know how you feel best thing is to take care how you see fit.

Yes, the comment was insensitive and horrible. Sometimes we have to see it through outsiders eyes. People who have not gone through this will never quite "get it". I am not trying to minimalize the dr. insensitivity but I think the doctors just see the SOB, fatigue and anxiety people feel as a minor issue in the list of symptoms of PE. We have to find a way to explain to people how we are feeling that truly illustrates how we actually feel. I can't count the times people have told me that I look fantastic--I don't feel even near good. My mom suffers from extreme chronic pain, I never quite understood how there were days when she just wouldn;t get out of bed--due to pain and fatigue. Though I don't begin to get her pain, this experience has enlightened me to her situation. I could always sympathize for her but did not have the empathy that comes with co-experiencing it. We have to show people somehow.
The best illustration that I had come by was suggested on this discussion board. It is the Spoons Theory. I have sent it to my family, friends and employer. Even my husband said to me "But you don't feel nearly as bad as that lady in the story do you?" I had to explain that I indeed did.
I am going to attach the link. You can download a PDF version at that site. The author suffers from lupus but I believe it can help anyone with a physical, mental disability or illness.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

This truly can give people a perspective and help people understand what we are going through. Maybe i should send it off to my doc too. Hope it helps.

I was equally annoyed by someone who recently replied to a post I wrote about fatigue- she said I should check with my doctor and start by walking a quarter mile a day; that exercise would help regulate my sleep cycles.

I was diagnosed with bilateral PE THREE WEEKS AGO! I can barely walk up the stairs to my apartment without wanting to rest afterward. I could sleep 11 hours each day- and I was NEVER like that before.

Some people are so worried about trying to "fix" things that they don't listen...and some people are just insensitive twits.

I'm sorry you encountered that as well.

n0mia I'm sorry for you that you encountered a reply that you felt was insensitive. I do understand your point of view about that, but one thing which I have learned in the 2+ years since my PE is that not everyone's experience is the same, even having had PE. I went back and looked at the discussion post you mentioned, and I don't think he meant any harm by what he said, it was his attempt at giving advice based on what was helpful to him. Just some speculation, but it is possible he just overlooked the fact that you were at that time only a week into recovery, or it could just be that his experience was a very different one.

I have been highly irritated more than once by people who come on and talk like everything will just spring back to normal if we just get the mental attitude of an athlete and push ourselves forward. That may have been true in their case, but I would hope they realize that there are different levels of PE and recovery will be different depending on that. We've had people from time to time come here for a few days or weeks who did have PE but it was something very small - as minor as a PE can be. I'm not taking away from the fact that it always has the potential to be dangerous and it's very scary to have even a small one. But those people also have no idea what it is like to have really and truly almost died and to have to drag yourself back from the edge of the grave. That sounds dramatic I know, but for some of us, that was our reality. I really and truly did nothing for a month after my diagnosis except sleep. I did get up and walk a little from one end of my house to the other because my doctor stressed the importance of some exercise, but he also told me to just do whatever I could manage. It was truly a struggle for me to walk just inside my house. So what you're experiencing isn't unusual.

However, I try to take the point of view that people are for the most part trying to help, and if I want them to try to take into consideration what my circumstances were, then I owe them the same respect regarding their situation. If they found it useful and were able to get right back out and exercise again, well then I'm happy for them that their experience wasn't worse, and I realize that some people here will benefit from their advice, also being in a similar situation.

The advice to add exercise as you're able is actually very good and right on target, if a bit zealous in the goals which were suggested. I certainly couldn't have walked a quarter mile, not until at least 2-3 months after my PE. I did, however try to walk some every day and I found that having even that little bit of a goal was really beneficial physically, hard as it was. Another thing we always say here is to listen to your body. If you're doing that, then you'll do fine. The fatigue which you are experiencing right now is the worst of it, and you'll improve quite a lot as time goes on. Obviously, this doesn't mean your fatigue will magically disappear - some of us who have commented on THIS discussion here have been even years into recovery, yet still experience a different level of fatigue than what we ever did pre-PE.

I wish you well as you continue to recover.

I think there's a difference between a doctor making a crappy, but well intentioned comment vs a person on this site making a crappy but well intended comment. I expect to get diverse opinions and feedback on a public forum. The stuff I consider useless or stupid, I blow off, or counter if I feel it's grossly incorrect from a fact standpoint, or if it just rubs me the wrong way ;). But like ShilosMommy said, people here speak from their own experience mostly, because what else do they have.

Ha, I KNOW I've said some things that probably have chapped the hides of many. The stuff I post is just my opinion so it really doesn't count for much, in the big picture. What does count is a trusted health care provider blowing you off, treating you like you're just overreacting , dismissing your symptoms etc. I think we've all experienced that, pre and post PE. I've relayed this story so many times, but the third doctor who misdiagnosed my DVT said that I should just "go to the gym and work through the pain." The next morning I passed out on the side walk from PEs. Thanks for the great medical advice, graduate of Ass Clown Medical School.

Agreed rmb - there is absolutely a difference.

My point was merely that we encounter those comments everywhere.