Is this normal after having a PE?

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Im sorry that i keep posting here, but i have to ask: is it normal to feel as if you are physically fragile months after PE treatment? i feel like if i start walking or running i will keel over and die, or wind up in the hospital again.

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13 Replies

  • Posted

    yes, it is completely normal, specially if you are on anticoagulants! It took my 14 year old daughter at least two years before she started to feel a little better and stronger! It also affects you psychologically and the best thing to do is to keep your chin up and ask for help whenever you need it! You will overcome it and feel better! It takes a little time!

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  • Posted

    Hi. Sorry you are going through this ordeal.

    I had my PE's 3 years ago. It is a pretty profound physical as well as emotional experience.

    I didn't feel well for months and I emotionally felt fragile.

    Counseling helped me a great deal.

    I also had a wonderful pulmonologist who sent me for post tests to make sure the clots had totally resolved.

    Now 3 years after, it's as though I didn't have them.

    You will get back to normal and what you are feeling is entirely normal.

    Take care. Be good to yourself.

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  • Edited

    I agree I am 1 year since my PE but still dont feel back to myself. I feel it takes a while before your body heals completely. I have gone to ER a few times wondering if I am having another since I don't take blood thinners any longer. Still get short of breath, heart palpitations, anxiety but things are gradually improving' It takes time.

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  • Posted

    I had mine this time last year, at the end of September I joined the gym and started step aerobics and pilates. It was hard doing step aerobics as I was getting out if breath due to the lung damage caused by the PE. I am still slower the everyone else and get short of breath but I still hope my lung can recover.

    I do feel scared and have a panic if I feel a slight pain or breathless, also I have a bit of an obsession to keep up my routine of exercising, not sitting for too long, drinking at least a litre of water per day. I do not think it will ever leave me.

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  • Posted

    i think this is perfectly normal from asking others. itgaveme such a fright like you and my energy levels have not recovered fully. i am learning to accept it. i am on warfarin for life and im sure that doesnt help. psychologically it affects many, me included, and i am still trying to get back my old self. everything seems so hard but most people seem to be able to get there given time. i wish you luck.

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  • Posted

    It's 18 months since I had multiple pe's. Dr gave me a 1 in 3 chance of not surviving the 1st night!! I have had multiple issues since. Mostly re nerve issues in my legs and loss of lung function. I have a great hematologist but I can't see him for day to day issues. Finding a Dr that took pe's seriously was my biggest issue. BUT it's all the medications that are playing with my symptoms. Every medication has a side affect. So another medication to address the side affects!!!

    I have many mental issues. Every pain is another pe?? Fatigue. Depression. Why me thoughts all the time. They told me it would take 2+ years to get back to 'normal'. Whatever that is.

    Everyone is different. I've read a zillion web pages. Reading too much is half the problem. I now believe that time and patience is the only answer.

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  • Posted

    Yes it is normal. I was diagnosed with PE a year ago and now am out of taking drugs, though walking

    faster or running is a big challenge since if I do, I feel as if am becoming breathless. Just try to be strong and you will get better.

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  • Posted

    i had my PE three months ago and i feel like i am shut down. that is the extreme fatigue is most disabling. the doctors say this is expected but i feel worse. i walk a few blocks and hours later i have no energy. i think it is the Xarelto but my doctors disagree.

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  • Posted

    i am three months since my PE and still ferl very fragile. but my biggest complaint is my extreme fatigue. some days i feel i am going backwards though my doctors say this is normal. i hope so.

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  • Posted

    i had DVT and PE in November. Been on Xarelto since then. My worst side effect has ben relentless itching that stated on arms and legs, but has now moved all over my body except face and genitals. I also get swelling back in my DVT leg each day after a few hours and swelling in my ankle.

    I have been give an anti histermine tablets to take with Xarelto, it has helped a bit. Both Elecon and Betnovate cream didnt help with itching.

    Had a skin biopsy and awaiting results also going to have more blood tests.

    I will also check if I can switch to 10mg tablets.

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  • Posted

    It can be tough at times. But I'm always wary of blaming any one medication on other issues. I've had many side issues since my DVT/PE's. Most of them are not related to medications. In my case the consensus is that my system is generally run down and I'm susceptible to anything that comes along!! Fatigue is my main issue. Last week I had my 18 month review from the specialist. (6 appointments in 5 days to do tests!!). Out come was I'm on medication for life. I'm regarded as 'high risk'.

    All I can say is hang in there. It does get better. Compared to where I was 6 months ago I'm way better. It just takes time.

    good luck.

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  • Edited

    I am 5 years post PE and still have fatigue issues .. I also have fibromyalgia so sometimes it's hard to know if it's from Fibro or the PE residuals. Since my PE, I now have chronic asthma .. the doctors keep telling me that exercise is the answer; however, it's hard to do much exercise when you're constantly fatigued and short of breath .. it's a vicious cycle. I wish you all the best in your recovery - remember to be patient with yourself - you survived something that many don't.

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  • Posted

    hi all,

    im writing on behalf of my mum shes 63 and suffered a PE in her left lung after contracting covid. She had a lot of pain in her chest which she was also diagonised with pleurisy. She came out of hospital and within a week went back in for 3 weeks with palplitations, erratic heart beat.

    shes now been out of hospital for 3 weeks but has currently been admitted back in just today. Shes came off a lot of painkillers and now is very short of breath, heart palpitations, a lot of pain in her shoulder and back of her left chest.

    is this normal?

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