Still in pain 3 and 1/2 months post 2nd PE.

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Hi I'm 35 and I've had two episodes of PE, the 2nd PE was diagnosed on the 17th of September 2015. I am still in pain on my right side and radiates to my back at times, my doctor says that it's my lungs healing and scar tissue. I'm concerned that this will be my life from now on, my first PE in May 2013 wasn't this painfull and I'm concerned as it doesn't feel the same. My doctor says that the 1st PE was lodged deep in my lung and the 2nd PE was on the outer lining and that's why I'm still in pain. I'm on Tramadol 100 morning and night with added Mersyndol for more painful episodes. I'm getting really depressed and I'm starting to loose hope for my future. Does anyone know what's going on? Please help me understand my condition and my hopes for the future to be pain free. I am now on Xarelto for life. 

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  • Posted

    Hey Jennifer! I'm jake, 25yrs old. I had a PE a little over 2 years ago in my lower left lung. The docs said it was a small one but it did do damage as to leaving scar tissue in my lung. I still to this day have random bouts of pain, at first I was certain it was another blood clot but I was proven wrong every time. I've asked my dr about it before and he said it could go on forever but there's no really definite answer to when it'll stop. I know it's scary at first but it always passes over. Hope this helps!
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    • Posted

      Thank you Jake, it helps. It is so frustrating, I don't know how to move forward with the constant pain. I don't know how far to push myself with exercise either, I'm starting to put on weight, the doctor said slowly but I'm sick of doing everything slowly, I just want to be better and back at the gym playing volleyball and doing everyday things without the fatigue and pain. When did you start back to living a normal life? 
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    • Posted

      Hi Jennifer

      I had bilateral blood clots beg sept and I totally understand how you feel. I have had tearful days, days when I thought I would never get better. I have returned to work three weeks ago I'm out the house 12 hours a day although phased return still long days. I'm not 100% still get occasional chest pains and I'm exhausted but mentally I think keeping busier helps. Time will heal so they say and I have read sometimes the clots may not disappear totally not sure how true this is as they don't rescan. Which I'm sure would greatly help us all. But please be reassured it's not quick but it does improve.

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    • Posted

      I was on Coumadin for a while and I couldn't do anything so I wasn't able to do much for about 6 months. Then I started to put on a little weight but nothing too bad. I tried running and I had major chest pains after about a half mile, and doing sprints I would have it. It was terrible, and I just had to stop and relax for a minute. It never has really stopped but I just accept that ongoing to have a little pain and just try to ignore it. You have to start out slow though because the painfor me was bad at first, you just have to work back up to what you were doing. I am a very active person, I'm in the military so I have to be. So I know how you feel when you're not able to do what you normally can do. I am pretty much back to normal now and am probably in the best shape I've ever been in but It's been 2 years since I've been PE free and I still have chest pain occasionally. So idk if it'll ever go away
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  • Posted

    Hi Jennifer,

    I have a similar timescale to your, as I had bilaterals pulmonary emboli in late August 2015. Th clots were big and there were many.  My very helpful consultant explained a lot of the characterstics of PEs to me.

    The pain you experience is the clot hitting the pleura and the pleura is very sensitive, so I am afraid it will hurt. In fact, most of the lung tissue has no nerves, so if none of the clots reach the pleura, you won't feel any pain (that's why some sufferers are unaware of any problems). The body will dissolve most the clots over a period of time, but some damage may remain. I my case, three clots hit the pleura at different times. The first was very painful, the second a little less and the third inbetween. The second and third ones don't seem to cause much problem (fingers crossed), but I still get daily pain from the first one. It is worse in the morning - from about 6.00am onwards until I get up.

    I was told exercise is good and to do as much as I wanted to, but be sensible. 

    I am still seeing the consultant, I think because of the size and quantity of clots and no obvious cause. He is monitoring the pain, but said it is not unusual as the pleura is so sensitive. I can't take any painkillers, as only anti inflamitories worked and the don't mix well with anticoagulants.

    The way I see it is to focus on lung capacity and lung strength to govern duration of exercise. My lungs have improved enormously over the last few weeks, so I exercise more. Pain about the same, but makes me feel better :o)

    I hope you see a similar improvement - Given you are around a month behind me since your happened.

    All the best Pete

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  • Posted

    Sorry for the typos - ipad keyboard no substitute for a real one.....

    P

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    • Posted

      if it is any help, when I had my massive PE in October 15, I was informed by consultants that there were two places in the country that could operate and removed the clot in my chest.

      It is January 2016, funds permitting I will seek private/or more direct medical advice from a VTE specialist. I need transparent explanation of my scans so that I can personally make the decision to close or open options for an invasive operation.

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