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.
Anyone on Xarelto experience this? I'm exactly 4 weeks out from PE in lungs diagnosis. I've been doing pretty well. Good oximeter readings and no SOB.
Went for a 45 minute light exercise walk outside yesterday and mild shoulder blade ache started an hour or so after.
Woke up this morning and it feels like it aching more...lower neck/upper shoulder left side.
I'm new to this PE stuff. Should I go/call a doctor immediately, or is this just an expected post-PE/Xarelto symptom? The new ache is mostly scary...not something I can't endure. Had my first exam by hematologist on Friday and all seemed fine.
I just took half a Xanax to try and calm down. Greatly appreciate guidance from anyone else who has had this symptom from PE or Xarelto.
Went for a 45 minute light exercise walk outside yesterday and mild shoulder blade ache started an hour or so after.
Woke up this morning and it feels like it aching more...lower neck/upper shoulder left side.
I'm new to this PE stuff. Should I go/call a doctor immediately, or is this just an expected post-PE/Xarelto symptom? The new ache is mostly scary...not something I can't endure. Had my first exam by hematologist on Friday and all seemed fine.
I just took half a Xanax to try and calm down. Greatly appreciate guidance from anyone else who has had this symptom from PE or Xarelto.
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
Honestly, I felt worse about five weeks out than I did at diagnosis. I had been pushing myself just too hard to get back to normal and wound up with increasing SOB, pain, and a ton of exhaustion. My pain was along my breastbone in the front and along my spine in the back. I had a repeat CT at the time and my clots were completely gone... I had just done too much for my healing lungs to handle. My doctor (gently) slapped me on the wrist, told me I was doing too much, and told me to dial it back.
I don't know if you've been walking regularly or not, but (by the way you wrote your post) it seems like you feel that the walk and the pain were related ... and they probably were. If this was a longer walk for you, or if the weather was hotter or more humid than usual, it might just have been too much, especially if you were already pretty active over the weekend.
You might take some Tylenol and see if that helps. Also, maybe give it a couple of days and see if it goes away. However, if worrying about this will be keeping you up at night, it might be worth checking in with your doctor, just for the peace of mind. It seems very common for most of us to have "episodes" of increased pain/SOB/exhaustion during recovery, usually after pushing it too hard. Usually, it's better in a few days, especially if you can manage to rest in the middle.
Hang in there!
Yesterday was my first outdoor fitness type walk since the PE hit (6/22/15). I got my heart rate up to an age-appropriate range -- I'm 51. I've gained weight in the past year and wanted to start getting back in shape in June before all of this happened..
During my walk yesterday, I felt good, my HR never got crazy high and I felt well afterward. Then, this new symptom hit me.
I've been trying to take it easy, only walking to go to work/doctor appointments and to do a few errands. Nothing strenuous. I've also been using the stationary bike on lower resistance. I'm up to an hour.
The Catch-22 is that the main things I can control in my 6-month proposed recovery are taking the Xarelto (easy peasy) and losing weight. Doing my best to be a good patient and take things slower, but when symptoms pop up all of a sudden, it throws me for a real loop.
Had I not responded to foreign sensations/muscle strain symptoms in my calf in June, I might not be here today. It's so hard to figure out what is and isn't life threatening. In fact, when I went to the ER the day before my PE diagnosis, they ruled out DVT after a doppler ultrasound (told me it was leg cramps and sent me home). I guess it had already travelled up to the lungs. They found lots of PEs on both sides...but thankfully, no lung tissue or heart damage showed up on the hospital tests. My inner voice told me I was in danger. That's what saved me. Now...I don't know what to listen to.
I really appreciate this resource and everyone on here who has taken the time to share their own journey. It helps immensely. I sat on my couch this morning thinking "who should i call? who do I ask? Is this something or nothing?" What do/did you do when that happened post-PE incident?
I'm usually a tough cookie and a confident person with a positive outlook. This condition has tested my emotional well being for sure. I have a therapist and will keep trying to figure out coping skills.
In the meantime, the actual real life experiences shared by people on this board brings relief. Please keep your wisdom coming :)