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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SunnySoon
SunnySoon
Hello! I am a 35 year old female, and almost a month ago made a trip to the ER due to uncontrollable trembling and a higher than normal heart rate. They eventually found a small PE in the lower lobe of my right lung. Since then I've been having symptoms that the doctors don't seem to relate to PE, and now I am scared that there may be something else going on as well. Considering the small size of the embolism, one doctor and the hematologist both said they wouldn't be surprised if one that size caused no symptoms at all. I also have pretty low ferritin (iron stores) and don't know if that may be contributing. I would like to know if others have dealt with these symptoms too, or if I should be looking for some other cause altogether. I'm starting to question now if it is even the PE that brought me in to the ER. I've read around a bit here and it does sound common for doctors to not know what to expect with PE recovery.

What I've been experiencing:
- Weak limbs, especially left arm, with a sense of trembling inside.
- Poor circulation, tingling in limbs most evident when laying down.
- Can't sleep unless propped up a lot, and that is getting worse instead of better. Feels like my heart has to work overtime when I'm laying down even though propped, due to heart pounding, and faster than normal heart rate. Even just rolling over in bed makes my heart pound.
- SOB when laying down (assume this is normal for PE)
- Occasional adrenaline surges, which while scary do seem to help get my blood moving
- Tired and weak all day, and nauseous when I am tired/weak
- Can't even do normal household stuff without bringing on the symptoms.
- Occasional "episodes" which include adrenaline surge, heart rate increase, feeling weak and nauseous, and trembling (though these have gotten a lot better)

Last week I had several good days, but this week I have felt like a train wreck 4 days in a row so far. Scheduled for an ultrasound of the heart later today to check for pulmonary hypertension, though I don't know why one small clot would cause that. It looks like most people here had multiple clots, and if I did too I might not be thinking so much of this. But the doctors seem to think not all my symptoms are consistent with PE, and I am wondering too if my recovery should be so difficult after just a small one.

Any input is greatly appreciated. Thanks!
rmb
rmb
I think it's hard to say how small and large PEs can differ in terms of recovery sometimes because some people here have had small PEs and seem to have as much as a hard time recovery as people with massive PEs. It may depend to on the location of your PE and your conditioning and overall health before the PE. Hard to know.

But I think considering your low ferriten history, that can certainly cause low iron which in turn can cause all kinds of symptoms, ie high heart rate and weird heart beats, fatigue, dizziness etc So perhaps that combined with your recovery is causing these symptoms. I would also make sure you are staying well hydration because some of the stuff you describe is consistent with dehydration as well.

Think it's good your having your heart checked, just in case. It's true with a small PE there probably wouldn't be as much strain on your heart as a large PE but it will be good just to rule out a heart condition.
rmb
rmb
Also, check with your doc about any suspected side effects to Xarelto. I've seen on different RX sites that some people people report arm and leg pain and muscle spasms. May not have anything to do with what you're experiencing but it may be worth checking.
deleted_user
deleted_user
Xarelto has that possible side effect causing arm and leg pain. Agree also Low Ferritin can cause a majority of those symptoms. I have had 3 Ferritin infusions over the last year. As a general note, some of what you are explaining are effects of low Iron. Hopefully the tests and your doctor will be able to shed some light for you.
deleted_user
deleted_user
Small clots in the lung is one cause of Pulmonary Hypertension. Glad that they are checking that out for you. I have Pulmonary Hypertension caused my left sided heart failure. When they found my small clot an echo was done. I was told that the clot was making my Pulmonary Hypertension worse. Hoping that the test comes out clear for you.
SunnySoon
SunnySoon
I appreciate the responses. Still waiting on the results on the echocardiogram. It makes me feel a little calmer knowing that there are others with small PEs who had a harder time too. Even sitting on a hard chair or standing for too long brings on my symptoms right now. My husband had multiple bi-lateral PE a few years ago, and in hindsight his recovery was pretty amazing and fast compared to most out there. I guess I was comparing my little one to his and wondering what on earth was wrong with me. I do think some of my symptoms must be from the low ferritin, and that maybe both conditions are compounding each other. It's confusing since several symptoms of anemia overlap with PE. When I went to the ER, I thought at most I would need an iron infusion!

Pinkroom, so did you have PH before your PE, or was it caused by a PE?
rmb
rmb
Just a mention on the weak arm and trembling. There was a recent post here about someone having arm pain and tremor like feelings and I'd read and someone else chimed in that is a reported possible side effect of Xarelto. So some of what you're feeling could be from the meds. Not saying that's the case for everyone or even for you, but just noting it as a possibility.
jeremy1999
jeremy1999
Sometimes smaller PE's can do more damage than larger ones because they can travel deeper into the lungs. Also, I was reading a study that states that larger saddle embolisms in some cases can save your life because when the clots get stuck straddling both sides of the lung; it can act almost like a filter that prevents the clots from going deeper into the lungs. To me this seems to make sense. You also have to remember that each persons body is different. You can't compare your recovery with anyone else. I was never tested for heart complications or pulmonary hypertension after my PE and I'm doing much better now. My average heart rate post EE visit and post Warfarin was 100 beats per minute while resting on the couch. That's pretty high. Now my resting heat rate is somewhere around 72 beats per minute. That's a big difference. I think you just need to give yourself some time and things will get back to the way they were before you had the PE. Good luck with the results of your ultrasound!
jeremy1999
jeremy1999
I meant to say post ER "emergency room visit!"
deleted_user
deleted_user
My Pulmonary Hypertension was diagnsed 3 years ago, My PE on March 4, 2014. The PE has made my Pulmonary Hypertension worse. That being said I know that for some people clots in the lungs cause Pulmonary Hypertension. The echo should help. Best of luck.
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