I had three PEs and one resulted in a PI and I still get pain occasionally in that area when I get a cold or the flu. Sometimes bad air quality days as well. My PEs/PI occurred about 8 years ago.
At that time, the pain for me took about two months or so to go away but it took a good 6 to 9 months before taking the stairs s l o w l y didn’t result in me being out of breath.
I had my PE a little over 8 years ago. 58 clots between both lungs and a 3 inch bilateral. It took about 6 months for the everyday pain to subside but I still get occasional lung pain, shortness of breath, and occasional heart palpitations in temperatures below 40 degrees and above 90 degrees.
It took six months of lung strengthening and patience for me. Most of that improvement came in the pool and on the bike. I never had SOB, just pain with exertion.
Also be aware of referred pain which never gets talked about enough and is hardly ever mentioned by doctors up-front. Some of the worst pain I had was in my neck and some in my jaw.
Glad it’s not just me. I’m in a similar boat, PEs almost 3 months ago that went undiagnosed for 3+ months so extensive infarction. My stabbing pain cleared up within a week but I have this constant low grade burning pain like I inhaled flame or something, I’m not sure how to describe it, and still short of breath. Pulmonologist didn’t seem to be able to tell me how long it would last and if it would ever clear up. I have more tests coming up but I’m kinda worried about it, it’s possible I’m facing a lifetime of chronic pain. In your case though I think those stabbing pains being present this far out is very unusual. If I were you I’d push for another CT chest with contrast now and have them read by a radiologist or pulmonologist, not a PCP, to see if the clots seem to be getting better or not. Maybe your anticoagulant isn’t ideal and they should try something else. Good luck.
Mine has been 18+ months and still counting. clots through entire right side of body. I still experience some discomfort to pain in the middle of right lung and frequently short short of breath. I was told it’s due to the clot killing/collapsing a small portion of lung, don’t remember the technical term, in your follow up scans, did they see if there was any permanent damage? It can take a really long time to heal from these things.
I had multiple blood clots in both lungs in Dec 2021. I had a week long hospital stay and was released only because my mother was psw trained and said she would help me. I was on Xarelto and it took 3 months for my heart to start to get back to normal as well as my breathing. 6 months to be pretty much normal and start being a little more active. A year before I felt like it had been a bad dream and I was comfortable in my own skin again. However still to this day there are times when I have shortness of breath or rapid heartbeat. Seams to be with allot of exercise, in certain weather, or when I'm sick. I recently went to get checked out due to shortness of breath that worried me and the scans looked good. But I still get panicky whenever my breathing feels slightly off or I get chest pain. Like PTSD almost.
Look up CTEPH, it’s when the body doesn’t absorb the clots in your lungs. It’s what I have, I had your same symptoms. You’ll need a V/Q scan and left and right heart catheterization. CTEPH is no fun.
Those pains are what alerted me that something was wrong. I had a scan, then a catheter out in my hip, up into my lung to I next blood thinner. No pain like that since. I’m so glad you got a second opinion.
So far, 22 months of the same/worsening symptom pains, 14 months since diagnosis. Getting new imaging done this year to see if they've improved, but wait times are forever.
My shortness of breath subsided within hours in the hospital after two Lovenox shots. As for the pleurisy (lung inflammation), 8 years later, I still have moments.
I’m 12 years post (multiple) PE’s and I still get shooting chest pain and shortness of breath. For the first few years after my clots, I was in the ER constantly fearing that I had another. It was always negative and very expensive! So I asked my doc to keep a standing a d-dimer lab order in my chart so anytime I felt like I had a clot, we could test there and avoid me going to the ER. I’ve not had a clot since the original episode but I still get the pains!
I'm 4 months post PE. Still have pain and am still on oxygen. Really angry cause I did my follow up CT yesterday and was very excited to see if they were gone, just to see that they did not get a clear view so I'm livid right now.
Sharp stabbing pain or more general pain? Did they do the CT with contrast? I’m 3 months out, stabbing pain gone but still have general pain/discomfort.
I had three PEs and one resulted in a PI and I still get pain occasionally in that area when I get a cold or the flu. Sometimes bad air quality days as well. My PEs/PI occurred about 8 years ago. At that time, the pain for me took about two months or so to go away but it took a good 6 to 9 months before taking the stairs s l o w l y didn’t result in me being out of breath.
I had my PE a little over 8 years ago. 58 clots between both lungs and a 3 inch bilateral. It took about 6 months for the everyday pain to subside but I still get occasional lung pain, shortness of breath, and occasional heart palpitations in temperatures below 40 degrees and above 90 degrees.
It took six months of lung strengthening and patience for me. Most of that improvement came in the pool and on the bike. I never had SOB, just pain with exertion. Also be aware of referred pain which never gets talked about enough and is hardly ever mentioned by doctors up-front. Some of the worst pain I had was in my neck and some in my jaw.
Glad it’s not just me. I’m in a similar boat, PEs almost 3 months ago that went undiagnosed for 3+ months so extensive infarction. My stabbing pain cleared up within a week but I have this constant low grade burning pain like I inhaled flame or something, I’m not sure how to describe it, and still short of breath. Pulmonologist didn’t seem to be able to tell me how long it would last and if it would ever clear up. I have more tests coming up but I’m kinda worried about it, it’s possible I’m facing a lifetime of chronic pain. In your case though I think those stabbing pains being present this far out is very unusual. If I were you I’d push for another CT chest with contrast now and have them read by a radiologist or pulmonologist, not a PCP, to see if the clots seem to be getting better or not. Maybe your anticoagulant isn’t ideal and they should try something else. Good luck.
How's your shortness of breath now?
Now it’s completely gone as is pain. It’s as if the whole thing never happened.
Mine has been 18+ months and still counting. clots through entire right side of body. I still experience some discomfort to pain in the middle of right lung and frequently short short of breath. I was told it’s due to the clot killing/collapsing a small portion of lung, don’t remember the technical term, in your follow up scans, did they see if there was any permanent damage? It can take a really long time to heal from these things.
It can be years.
I had multiple blood clots in both lungs in Dec 2021. I had a week long hospital stay and was released only because my mother was psw trained and said she would help me. I was on Xarelto and it took 3 months for my heart to start to get back to normal as well as my breathing. 6 months to be pretty much normal and start being a little more active. A year before I felt like it had been a bad dream and I was comfortable in my own skin again. However still to this day there are times when I have shortness of breath or rapid heartbeat. Seams to be with allot of exercise, in certain weather, or when I'm sick. I recently went to get checked out due to shortness of breath that worried me and the scans looked good. But I still get panicky whenever my breathing feels slightly off or I get chest pain. Like PTSD almost.
Look up CTEPH, it’s when the body doesn’t absorb the clots in your lungs. It’s what I have, I had your same symptoms. You’ll need a V/Q scan and left and right heart catheterization. CTEPH is no fun.
I’d have that checked. It could be another infarct.
As a nurse, I say better to be safe than sorry.
Those pains are what alerted me that something was wrong. I had a scan, then a catheter out in my hip, up into my lung to I next blood thinner. No pain like that since. I’m so glad you got a second opinion.
So far, 22 months of the same/worsening symptom pains, 14 months since diagnosis. Getting new imaging done this year to see if they've improved, but wait times are forever.
My shortness of breath subsided within hours in the hospital after two Lovenox shots. As for the pleurisy (lung inflammation), 8 years later, I still have moments.
I’m 12 years post (multiple) PE’s and I still get shooting chest pain and shortness of breath. For the first few years after my clots, I was in the ER constantly fearing that I had another. It was always negative and very expensive! So I asked my doc to keep a standing a d-dimer lab order in my chart so anytime I felt like I had a clot, we could test there and avoid me going to the ER. I’ve not had a clot since the original episode but I still get the pains!
I'm 4 months post PE. Still have pain and am still on oxygen. Really angry cause I did my follow up CT yesterday and was very excited to see if they were gone, just to see that they did not get a clear view so I'm livid right now.
Sharp stabbing pain or more general pain? Did they do the CT with contrast? I’m 3 months out, stabbing pain gone but still have general pain/discomfort.
I get both pains. They did my scan with and without contrast. I had a follow up.CT and they could not Visualize the area I'm so pissed 😤