Symptoms have come back

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I was diagnosed with PE on Feb 16 2017, after being off work for 6 weeks I thought I made progress. I started doing yoga and pilates to get me active. Well the last 5 days, my shortness of breath has come back and my chest pain is so intense. I now have shoulder blade pain like no other. I take Tylenol to try to help...nothing works. I am miserable. Should I go get checked or is this normal? I'm exhausted after walking short distance and even just bending down I lose my breath. I feel like I have new clot or something. Please help

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16 Replies

  • Posted

    Hi. I was diagnosed with bilateral PE on Feb 20 2017. Whilst every now and then i get my symptoms returning it doesn't seem to get quite as severe as yours. It can't hurt to go see your doctor to be sure. Best of luck. It's a horrible thing to live with. Love to hear how you go.

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  • Posted

    OMG it's only 6 weeks, I was diagnosed 2yrs ago with bilateral PE. It took 6 months before I was not puffed out, short of breath and in pain doing very minimal exercise.

    I am now able to walk at a medium pace for about 15-20min. I still get unexpected bouts of shortness of breath and chest pain.  It is going tontake a lot longer than you ever thought to begin feeling "Norma".

    I have a new normal now and adjusting my life to suit it. It took me nearly a year before I was able to return to work,Mandy even now I am only working 3 days a week because I get to tired. 

    Try not to rush your recovery, remember you had a life threatening illness and it will have taken its toll on your health and fitness. 

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    • Posted

      Wow, thank so much for that. My doctor made me feel like a total but because I said I wasn't ready to go back to work 3 weeks after being diagnosed. Well let's just say as of 3/28/17 I was finally moved to a new doctor. I feel like people who have never had pe's don't quite understand. I had 2, one really large one and one medium sized clot as well as heart damage. So I will just listen to my body for now on.

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    • Posted

      Hi Kandace

      I was diagnosed with large bilateral PE's in November 2016 and still now I get breathless, chest discomfort and rapid heartbeats.  I too have right heart strain due to the clots.

      There is very little support as i think PE's are not very well understood, however you are among friends here and any questions just ask, someone will be able to help / advise you.

      Listen to what your GP and consultant say and listen to your body, it has gone through a trauma and needs time to recover.

      Take care x

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  • Posted

    Hi Kandace. I still get out of breath 7 months into recovery. But think you should get checked out for peace of mind. Fingers crossed 😊

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  • Posted

    I was first diagnosed in June and began to feel better for a while. About 2 months ago it all came back full force, pain, like a burning in my chest, and totally out of breath with the smallest activity. I have become very lazy, not keeping myself or my house up like I used to. This makes me feel guilty but i just feel so drained. No one really explains to me how I should or shouldn't feel so this site is helpful to me. I went back to the doctor and now they have a bunch of tests scheduled over the next couple weeks. I cannot do the scan with the dye as my kidneys aren't functioning properly and the dye would be dangerous for me. I am on Eliquis, two pills a day. I wasnt taking them the way I was supposed to , most days i was only taking one. I figured that was why I was back to feeling so bad. I now take 2 a day without fail. You need to go back to the doctor if you're feeling worse. Please keep us updated.

    Laurie

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    • Posted

      Hi Laurie. I agree this site is such a comfort. We can describe our symptoms and not made to feel as though we are making a fuss about nothing. It can be very scary having such pain and being tired all the time. Lizzie xx
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    • Posted

      Thanks for replying. This site is absolutely the best. I feel like nothing could have prepared me for what I was gonna endure after being diagnosed. I feel like sometimes people who've never experienced this don't understand. This site is so helpful. I go to the doctor's this week. Hopefully they can tell me something

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    • Posted

      Good luck. Just had call from doctor my bloods showed some inflammation. Have to check them again in 6 weeks. I have a lot of lower back pain when walking. Can't take anti inflammatory whilst on Apixaban. I take 2 a day. Good luck to you all. We will get through this we have got this far. 😊 xx

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    • Posted

      I was diagnosed in August last year. I have some really good days and manage a bit of light gardening. But then I get bad days when I am out of breath getting dressed. We just take each day at a time. xx
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    • Posted

      Good luck at your doctors visit. Write down all your symptoms as it's hard to remember them all once you get into the doctors office. It may help to keep a weekly diary to monitor yourself. People really don't understand what your going through, but we do. Good luck.

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  • Posted

    Kandace,

    I got pe in January 2016. Didn't clear of clots until 12,2016. Still get shortness of breath at times and muscle pain in chest or back. I did change doctors in August 2016 due to he wasn't knowledgeable when I started asking questions. All doctors had told me NO exercise for 6-8 months. I would see your doctor ASAP...like Monday. I was on xaralta for 8 months and now baby asprin. Wasnt given approval to do any light cardio until October. You can exercise this out of you. You will Only accelerate it.

    See your doctor tommorrow and tell him/her your symptoms in detail. Good luck!

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    • Posted

      You "cannot" exercise pe out of you. Your body has to heal itself.

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    • Posted

      Ok thank you. My original doc told me after 1 week of being released from the hospital he wanted me to walk 10,000 steps a day and to use a fit bit watch to track my steps. I thought he was joking and he was serious. I told him I can barely walk around my house w/o being out of breath. I really hope this new doc I have now will be more helpful. I would just like to feel like everything I experience is normal.
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    • Posted

      Kandace,

      PE is not a joke. Listen to your doctor, follow his advice, and it's also good to attain more knowledge to help your recovery.

      You have a life threatening condition. Thats the truth.

      Ask questions, research it on line, it's your life that is on the line. No joke.

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