Pulmonary Embolism Support Group

By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.

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TossNTurn 02/19/2010

I'm almost four weeks post-PE and I've been feeling pretty good. Very little pain, short of breath only occasionally, almost back up to a full-time schedule at work, INR 2.6. Anxiety when I go to bed, but that is about it.

Then, yesterday afternoon, I did a little jog across my workplace while hurrying to get back to a customer and it seemed like everything went downhill after that. I started coughing (sometimes dry, sometimes absolutely wracking); my chest started to hurt; I started getting weird little shoots of pain in my ribs, my neck, my shoulders; and the exhaustion just flooded me. By the time I got home, I was so tired I couldn't stop crying. I just laid on the couch all evening with a heating pad. Eventually the cough calmed down, unless I got up to move ... but I was still SO tired.

I took Ativan to help me sleep and I did sleep pretty well, but this morning I am still achy and feel completely drained. I called in sick (even describing what I felt like to my boss caused tears again) so my plan is to spend today on the couch with a heating pad as well.

From reading other people's posts, it seems like these post-PE bouts of exhaustion and nerves are pretty common. I think the only cure at this point is to just huddle up and rest.

Anyone else have this happen? Should I be calling my doctor? Is sleep really the best plan?

Thanks everyone...

ShilosMommy 02/19/2010

It sounds to me like overall you're doing amazingly well. Good that you recognize that these setbacks do happen though. It does sound to me like your plan of resting and heating pads is probably the way to go. When I have things like that happen it usually takes a few days to get my energy back up again, so don't be surprised if you need to spend part of the weekend that way too. Get as much sleep as you can, I always find that it helps.

Hope you're feeling better soon!

deleted_user 02/19/2010

4 weeks to the day after my PE I was more exhausted, hurt more and had more anxiety than when the PE happened. I found that for many months post PE I would have a few good days and then Bam! get hit with days of fatigue and pain. It seemed to me as if it was 3 steps forward and 2 back. Listen to your body and take the rest whenever you possibly can. It does get better.

TossNTurn 02/19/2010

Thanks so much! I spent the day on the couch and am finally feeling like I have some energy again. I clearly have to be careful. I may have been getting a little cocky about how good I was feeling and wham-o! my body is telling me to slow down. *sigh* I'm concerned it'll happen again. That level of exhaustion was not fun!

deleted_user 02/19/2010

During this whole month I have called myself "the every other day person". One day I overdo it and the next day I end up doing almost nothing . It's so hard to slow the pace down when you really want to do so much more. I hope to strike the right balance one of these days.

Take care of yourself and slow the pace down where you can? Sounds as if you have done well otherwise and there's lots of hope for better days ahead.

deleted_user 02/19/2010

I also understand. I thought I was doing better as well. Then I attended my first appointment of pulmonary rehab. She has me doing some stretching at the end...and well, now I'm back in pain again and started my lung grumbling where I infarcted. I'm trying to look at is no pain, no gain, but holy cow...this is really starting to get old.

TossNTurn 02/21/2010

Ah...sigh...I felt better Friday night and did OK on Saturday but have been sliding downhill all day today (Sunday). Weird chest pains, coughing, exhaustion, *high* levels of anxiety. Been trying to relax all afternoon and have been failing. Anyone else have episodes like this?

I'm feeling like a real hypochondriac all of a sudden. Of course, if I hadn't been paying attention to my body four weeks ago, the PEs would never have been diagnosed in the first place. It's a catch-22. To be concerned over these symptoms or not? I guess the best thing is to take it easy and try to relax. Any other advice?

deleted_user 02/22/2010

I think it is hard to know what is what at this point. But the best thing is to listen to your body and trust your gut. One thing my dr., neurologist told me is to not assume that it is just "normal" for what has just happened. If it is something that is owrrying you, then I would just put call into the doctor and tell him your concerns. It is better to be safe than sorry. Maybe it is just post PE stuff, but it could be something you need to se the dr. for. It won't hurt to just call the dr. and ask.

It has only been 2 weeks for me and I have a moment that I have energy and I get up to do something and then 10 minutes later I am down. that is to be expected as I have heard from all of you and the dr. But I now have a sharp pain in my calf. that is new. I have never had a DVT, that was not what caused my PE's so I was not sure but I called the dr. anyway and he said well it could be nothing, but I would rather you find out it is nothing than find out you are back in the hospital again. So we are off to the ER to get an Ultrasound of the leg.

So that is just my thoughts on what you are all feeling. Hopefully you will feel better soon!

deleted_user 02/22/2010

You are doing really well. I am almost 6 months out (6 months next Monday!) from my hospital admission and I still have really bad days. To be honest, I have more bad days than good. I just try to take those good days and enjoy them and do what I can, and you may heal a little differently than me, but I've found not to let the good days fool me - we don't heal instantly. Although it seems each bad few days might be a little better than the last bad days. Does that make sense? I have also started working after being out of work for several months, and I have a lot of pressure on me. I too get my worst anxiety at night, possibly because I was admitted in the evening hours...not sure. But just remember, you are alive, and you know your body. If something feels really wrong, don't be scared to ask questions of your Dr. or go to the ER if it gets really bad. I have been twice since my stay (after literally being a person who had never been & never wanted to go in the hospital since until my PE!) and both times clot free. one other thing I try to remember is when I cough like you are describing, my lungs are still recovering and anything that makes me cough just wears me out. your lungs are probably so sensitive that coughing seems like a really painful thing as opposed to before the PE. Sorry for the rambling, but I can relate.

TossNTurn 02/22/2010

Hi All! Saw my doctor this afternoon. She's worried about my symptoms but doesn't think another scan would show anything. She said things sound fairly normal for PE recovery but if my chest pains and coughing get worse, she'll send me to a pulmonologist.

In the meantime, more medicine for the anxiety and a referral to a psychologist to "talk it out." And she's cut my work hours back to half-time again so I don't wind up accidentally overdoing it again.

Good that something else is not wrong, but I wish I didn't feel like it was three steps forward and two (and a half) back. I guess even a half step is progress.

deleted_user 02/23/2010

Glad to hear that nothing else was wrong. I am glad you went in. It helps to know that, and maybe you will sleep a little better tonite, even though it is hard.

I also found out nothing new was going on with me. they did a ultrasound of my leg and it did not show any clots. The doc, ssid that is good that i came in. It was a very traumatic experience and very serious so it was better to know and treat it if need be, and if it nothing, then that is great. But for what we have been through, we need to listen to out bodies and take care of us.

Hope you sleep better tonite!

deleted_user 02/24/2010

Hey - I wish my doctor(s) were as supportive as yours - they all seem to tell me that "because (I) am young, there will be no lasting damage" or, "the pain is all in / from your mind". I don't particularly like this mentality, though I do find that I feel more anxious than anything when my chest starts to hurt, but it seems to be more of a if-there-is-no-concrete-result-then-you-are-fine sort of attitude here (in Japan). I am actually jealous of the support you (all) have gotten, though I should just be thankful that I am at home and with my family! Still, many days I have spent frustrated at my fatigue, pain and depression - I had to leave college for a year and it was a very abrupt change in scenery / life-style.

Anyway though, I am happy to hear that all of this "post-PE" stuff is normal ... hope you (all) feel better.

deleted_user 03/31/2010

Yeah, I was feeling pretty good around that time too, so I started to work out again. Physically it was extremely draining, even at very low levels of exercise. Coughing and chest pain got worse for a little while, then improved after a week or so. Now (4-5 weeks after starting basic workouts again) I have very rare coughing or chest pain, so I'm almost wondering if it was just related to my body re-adjusting to exercise.

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