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I went to the ER a little over 6 wks ago and had Numerous PEs was admitted had just horrific pain! Stayed 8 days now on xeralto 20mg but this God awful pain is unrelenting! Along with other symptoms. The pain is ridiculous and even though my doc said the clots resolved before I was released why in the he'll is the pain SO bad it is exactly where the pe's were and I being a Nurse for 24 yrs know that the PEOPLE blocks the artery in the lung. My doc gave me pain medication a small dose but it doesn't even touch it is even took 2 exactly the same thing nothing helped and the doc seems unconcerned anyone else having this much pain?????
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Sorry to hear about your problems, not sure if I can help or not, but can at least tell you what I experienced pain-wise.
I had really bad pain when the PEs hit the pleura, both before and during my hospital stay. I too was put on Xarelto and it initially seemed to help. Still had pain at the sites of the PEs, but was less than when they hit. Over the next weeks, things improved, but then I started to get bad pain in a variety of places (knee, neck, back). This got so bad that I ended up getting switched to warfarin. Almost immediately the pain relented. I have been on warfarin since (about a year) and still get discomfort, but it is now more nuisance than unrelenting.
Sounds a bit different to your experience, but please ask away if you want to know more.
Hi Peter and Sharon- I can see the pain feeling different if they're more in the pleural space. Mine was a saddle PE, which might explain why it felt more like a pressure. My situation could have been different.
Sharon, is the pain more of a pressure? That's how I would have described mine. I think there is a huge lack of knowledge with PEs. Maybe due to the fact that a lot of people don't live through them or have follow up CT scans after treatment. I don't think it's likely that yours could be dissolved by now. I had pressure and a cough for quite a while (at least 2-3 months) after my episode. Granted- mine was huge. That could have taken longer. The pain you're experiencing doesn't sound normal to me. Is it mostly when trying to take a deep breath or constant? Are you resting so that you can heal properly. My heart pounced every time I tried to do even the least bit. So make sure you're resting enough so that your body can heal. You might want to get a second opinion. You may need an increase in whatever blood thinners you were on to make sure it goes away like it needs to. Good luck! So sorry you're in pain. Thank goodness you lived though! God bless....
Thank you All for responding. It's been another 2 weeks NO CHANGE! I'm still on xeralto 20 the pain is exactly where all of the embolisms where. The Pain is SHARP. Not a pressure . I just can't seem to move air past midway of my lungs. I thank it's ridiculous that I'm finally going to see a Pulmonolgist 8 weeks after having so so many! I have the imprint of the blasted heating pad on my back! I gave up on the pain meds. I figured I would try to at least not shut my liver down.
Hi Sharon, I hope some of your pain has resolved now. I am experiencing sharp pain for the first time 3 months after my hospital admission. Previously I had some radiating pain to neck and along my arm to fingers, combined with intense pressure and dizziness. Those symptoms persisted intermittently over 3 months, and slowly diminished, so I started to increase my walking distance recently, thinking 3 months should be long enough to recuperate. Wrong! For me, anyway! On the day that I pushed the distance I felt fine. The following day I was wrecked! Now, two days later, I am having pain like you describe. It is really uncomfortable. Intermittent, intense waves of pain. Until now I have not felt the need to take pain killers. Tonight I just might. People describe pleuritic pain, and it does feel very much like that. The pressure in my ears has returned again, too.
It is so helpful reading of other's experiences, because no one is able to tell you how your recovery will evolve. Some days I feel like a fraud, and I will try to do more, only to end up feeling worse again. I am trying to lose weight through improving my diet. It is about the only aspect of my life that I can control right now. It has helped my mobility and my mood.
The warfarin improved my leg pains almost instantly. For the first time in years I have hardly had any pain in my calf muscles. Like others have described, I occasionally have unexpected pain in weird places, but I don't know whether they are related to the PEs or if I am just hyper vigilant.
I didn't see the Respiratory team until 2 weeks ago, and I suppose the delay was so that, hopefully, the warfarin will have done its job and they can assess how well you are doing. The doctor was sympathetic, but didn't give me much to go on. I was not given a V/Q scan or follow up CT because they did not want to irradiate me further. My bloods have all been normal, including my blood gases. I appear to be on a positive trajectory. I was told I will have to be on warfarin for the rest of my life in all probability. If it keeps me going, I will learn to live with it. There are worse things in life. I am on a relatively high daily dose to keep my INR in range.
Part of me is reassured at being signed off as an outpatient, and part of me feels very isolated. That is why I appreciate your stories. My neighbour went through something similar, but more severe, 3 years ago, and he is fighting fit again. This gives me hope. I hope you are able to get the answers you need, Sharon. Like you, I am a nurse, and caring for acutely unwell patients is very different from helping them to overcome long term illness.It is an eye opener living on the other side. Keep well.
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