symptoms a year on

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I had multiple small pe's just over a year ago. Some days I feel absolutely fine and carry on with my zumba classes and every day life with no problems. However at night and in the mornings I get pressure like pain across my chest and back.. and if I overdo it, like driving for 5 hours or over, this same pain can last for days. I also seem to be more susceptible to viruses and every virus brings on this pain again. So does anyone else have a similar experience post pe? Is it something I just have to deal with or can anything be done? Any advice would be appreciated.

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  • Posted

    i had bilateral PEs a little over a year ago

    I have been getting these pressure pains in by upper back every night, it wakes me up when I try to turn over and also when driving anymore than a 1/2 hour. It is fine during the day, unless I sit at a table / desk for over 1/2 hour. At first I told the GP, and he said it would disappear quickly, but it has not, am now seeing a different GP so am going to bring it up with him today.

    like you I am not sure if this is normal

     

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    • Posted

      Hi, Thanks for this and could you let me know what your different GP says as it sounds similar to what I've been experiencing. I've booked in next week with my GP so will also update if I hear anything construsctive. This condition seems to be one wher ethere is very little knowledge and is so frustrating.
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  • Posted

    Hi Cathy

       I have varying different pains in my lungs on and off. There is no set pattern to them and I can go days or weeks before getting them again! My haematologist said the only cause they can come up with is scar tissue though in all honesty they don't really know despite lots of sufferers complaining of the same thing. 

       He said not to always presume it was past PE pain either. If a pain is consistent it could be a new unrelated problem. I am confident they are pe related as I know them now but it was a good reminder that there's a few organs in the upper body that could be causing new pains.

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    • Posted

      Hi Catherine,

      ​Yes I have heard the same re scar tissue and that is what i'm assuming but do wonder if over time it is meant to improve or if I have it for life and ust need to get on with it. Yes I agree that shouldnt always assume it's PE rleated. Hope we all get sorted soon!

       

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    • Posted

      I had my first PE in 2011 and my second in 2015. In the 4 years in between, these pains persisted so I kind of think it may be a for life thing but only time will tell! It's always scary but I can now differentiate between the scar tissue pain and the new PE pain so I have to give myself a good talking to and hope it goes away soon!!! 
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  • Posted

    Hi Cathy, my GP told me today if I was not on Warfrin and still have the IVC filter still in he would think I had another PE, but he is fairly certain it is scar tissue from my PE last year that is causing the pressure pains in my chest.

    Now I have to see a cardiologist for the rapid heartbeat I have had since the PE. It would be great to feel like I did pre PE, or at least a timeframe on how long it takes to feel normal, I dont want to just live with it.

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