I think it is normal for some people to experience some pain post PE. I had no pain when I had my PE. The pain I did experience didn't happen until a couple of weeks after my PE. Some may be anxiety that is true, but some not. The DVT leg pain can take a while to go away too.

Recovery hurts. Your body has been through a major trauma. And now that you're home, you're doing more so your body just needs to get up to speed.

Yeah, what RMB said......

It's pretty normal to have pain while recovering. I'd only worry about the pain if your INR is excessively low.

I had no pain at all on diagnosis and for about a month after that. At that point, I developed some low-grade pain in my back, shoulders, and breastbone that showed up mostly when I was pushing myself too hard ... well, at least harder than my healing lungs could put up with. I'm more than two years out at this point, and I'll still get little twinges every now and then when I'm in super hot or cold weather or I've just been working myself too hard.

The SOB comes and goes too, for a quite a while. Also, the pain in your legs could be around for a while. With my first DVT, it took about two years for me to feel 100% again. The second DVT we found a lot faster and I felt fine there in about a week. It really is hard to predict how your recovery will go ... we're all a lot different and each clot is different.

This sounds pretty normal to me. Your lungs (your whole body, in fact) has been through a major trauma and it isn't going to be all better right away. It is is like starting to walk again on an ankle that was severely twisted and/or broken. It isn't going to feel great right away and it'll probably take a while for the pain to go away.

I mean, it might be anxiety, but your doc is not very experienced with PE recovery (and many aren't) if he thinks you should be pain-free and all better at three weeks out. At this point, really, I would be surprised if you were NOT experiencing chest and leg pain.

Hang in there! It does get better, just slower than we usually would like.

I had my PE July 2, 2011. I am still short of breath. And still have leg cramps. I am on warfram so hopefully it will prevent this from happening again.Mine are in my left leg and in my lungs. It got so bad I had a heart attack and flat lined from it. They shocked me back to life. And here I am. I still have the simptoms and it still scares me.I have 5 kids and don't want to die again. I think this is going to be either a very long time to get back to normal, or maybe we will never get back to that point again. Stay on your blood thinners..

I want to thank everyone for taking the time to answer my post. I feel a little more at ease seeing that I'm going through what many of you have experienced or are currently experiencing. My INR this week was 2.8 so I know I am at a therapeutic level. The honest truth is that I am scared because all my doctors do not know how this happened. I even had the genetic testing done and all those results were negative. The wafarin also makes my stomach bloat and I'm quite uncomfortable everyday. Once again..I thank you all for being so kind to answer my concerns.

@Jem123

Yeah, a lot of us don't know why we clotted. I've been tested twice for genetic issues and came up negative both times. They told me in the hospital that I might just have something we can't test for yet. Many advances have been made in clot discoveries in the last 20 years and they'll probably find many more in the next 20.

As for the warfarin being uncomfortable ... try taking it with food to see if that lessons the problem. Also, you might consider asking your doc (and your insurance!) if you an try the brand name for a couple weeks to see if it helps. Sometimes the fillers and dyes they use in the pills cause people issues that can be alleviated by switching to the other.

Best wishes!

Thoughts are with you Jem.

With respect to pain *after* diagnosis, that was certainly the case for me. The pain was worst at night (about 2am) whilst I was on both heparin and warfarin. My theory (and I'm no expert, so this is just a theory) is that the chest pain was party due to when blood got back to areas where it hadn't been (due to the PEs) for a while.

So, pain in the chest could actualy be a sign of recovery (of clots getting smaller). As I say, just a theory.

Regarding shortness of breath, it's normal for everyone's body to behave differently to the same effort at different times of day. For example, at 6pm if I walk up stairs then I'm not short of breath, but at 8am I am. So try to separate these usual fluctuations in our bodies from the worry that symptoms may be getting worse. Have a look at my post on Advice for Life after PE and Warfarin.

But, after reading that, please see the response from Ariel because that is equally important. It's important not to worry too much. I've found that by being aware of what's usual for me I've been able to control my worry.

Best wishes Jem.