Well full disclosure, I'm a person who had a clot, went off of warfarin and clotted again 6 weeks later. But the thing is, my first clots were in my leg and lungs. My second clot was in my arm and felt nothing like my leg clot. The thing that prompted me to go to the doctor (I suspected it was another clot simply because I thought EVERYTHING I felt was another clot) was that the discomfort in my arm got worse over a week. So I would say one of the ways to try to distinguish between what's a DVT and what's not a DVT is that a DVT typically doesn't improve or it will get worse. Obviously there are exceptions to that but just generally that's how it goes. I would say anything where you have redness and tenderness, get it checked out. I know this is an imperfect but we have to go by what is the most likely to occur rather than the more unusual scenarios where you have no symptoms.

With time, I think you become less focused on your body and you think about clotting less and less, which will make you not notice every day aches and pains as much. That will help you sort out something to be concerned about. For instance, I know before my PE, I paid very little attention to every little twitch and ache and what not so it would be fairly easy to know if something was not right. It was only after the PE that I felt like I could feel every cell within my body and that made it hard to know what to be concerned about. But that does get better over time. Distractions are good. Lots and lots of distractions.

I wish there was a magic solution but there's not. It's time, and more time, and even more time to recenter yourself so your default position isn't fear and worry. But you will get there.

I think you did a wonderful job putting in to words what many of us are feeling and dealing with also. You are definitely not alone. My daughter was 17 when she had a major bilateral PE - out of the blue - healthy one day, deathly sick the next. She had a left lung infarct and a complication of fluid around the lung after the 1st week. There was no evidence of DVT and they checked her head to toe with multiple ultrasounds. Her doctors took an approach of knocking causes off the long list of potential reasons this would happen to someone so young so she has had a full workup of genetic testing for clotting disorders, autoimmune blood work to look for anything like lupus and other autoimmune issues, her heart came through it fine and she has recovered quickly. All the testing has come back clear. She is on lovenox twice a day and will be for at least another three months. I share this because right now we are feeling that if additional testing the doctors are planning for the next three months that includes repeats of some of the autoimmune blood work continue to come back all clear, we will be okay for her to come off of the lovenox. However, I can't promise you we won't feel just like you are feeling now when that time comes and the safety net is gone. Understanding that pregnancy very well is the cause of your PE, do you feel like your doctors have done adequate testing to rule out any other underlying issues that may have caused the PE? If not, could you have that discussion with your doctor and ask for more testing? Possibly explain to him that you are looking for a greater sense of security as you go forward. If you have had testing, then try to remind yourself daily that everything checked out ok or take out those test results and read through them to reconfirm that nothing has been found that indicates this will happen again. I understand the search for peace. Good luck. I'm so happy you are doing well.

I am due to come blood thinners in December so I have no experience but everything you have thought mentally has run through my head for 4 months now. It is exhausting and I hope somehow to move past it after the genetic testing.

I will try to keep this brief. Have had 4 deep vein thrombosis blood clots in my life over the years. Last one being a PE which almost killed me. I have to be on coumadin blood thinner rest of my life now and sometimes added in lovenox belly shots. (WAR ZONE on my belly) LOL. The PE was in May 2015. So haven't been healing all that long. I'm on oxygen at night but I'm finally going off that in couple days and did sleep study recently and discovered sleep apnea so trading the oxygen machine in for a CPAP machine...and was told I will not have to have oxygen fed into it. I have worked diligently all summer to work my way back to walking a mile a day like before the PE.. Happy to report I finally worked my way back to a mile in THREE MONTHS after the PE. Little at a time. And I will clue you in they are NOT FAST PACED walking either. My dog and I walk real slow and doddle along the way and sit down 1/2 way through. I can't do it every single day because when it's HUMID outside I can NOT breathe. But I see now there is light at the end of the tunnel. I have good days and I still have bad days too where I have a lot of trouble breathing. But 3 steps forward, one step back. (BUT REMEMBER IT DOES GET BETTER! Just do what you have to do, follow doctor's orders but it gets better! Hang in there!

I think everyone has said things just perfectly! :-)

Its truly a time issue. I completely get the difficulty to not worry about every ache and pain. But I just have to remind myself that my doctors are in charge of my treatment and have no out of the ordinary concerns.

As time goes by, I have been able to distinguish my "new normal" pains to the pains I had back in June. When the pain is different that previous days, I try to think what is new or what I did too much of. Typically I can attribute the pain or extra tiredness to overexertion, weather, etc.

I also read a lot on this board. This board has helped keep me calm over the past four months more than I can count. Knowing I am not the only one to feel something or thing something; not being alone with this battle, has helped me through the tough days!

I had my first PE when I was 8 weeks pregnant. My baby is now 7 years old. It was thought that pregnancy along with other perfect storm stuff caused the PE. It was a scary time but my daughter and I survived and I went back to everyday life. Scans could not find a DVT so Im not sure where it originated.
When my daughter was three years old I got a little breathless and couldn't get rid of a cough. I had a feeling that something was not quite right and went to my doctor. As she checked me out and said i didn't appear to have an infection and it didn't sound like asthma she asked if I had ever had a clot. she checked my legs but couldn't find any sign of a DVT. Because of my prior history she didn't feel comfortable with me going home and sent me to the ED.
I had a massive clot in one lung along with many smaller ones in the other. I was admitted and treated.
For a long time after this I was terrified about the what ifs. But this has
steadily improved and I don't really give it much thought now. I focus a lot on the things that i want to do and enjoy.