How did you get your PEs?

Posted , 7 users are following.

I was just curious to find out about other people's experiences. How long before you got a diagnosis? What were your symptoms? Also, has anyone completely got rid of them and has had no problems since?

I got mine from the pill Dianette, I had symptoms for years before diagnosis. Chest pain, palpitations, breathlessness, gravelly feeling in my chest, a dry cough, trouble taking in a deep breath, electric shock type feelings in my chest, pin prick feelings and warmth in my lungs, the feeling something was stuck in my throat, hot flushes, the chills, cramps and pins and needles.

I am 7 months on from diagnosis, I still have breathing issues and chest pains but not as bad. I don't get bad palpitations like before, but my heart can get pretty fast here and there. I still have a cough but the feeling in my throat has gone. The electric shock feeling, cramps and pins and needles have stopped. I recently stopped my blood thinners and the warm, pin prick feelings came back as well as this thudding pain in my back, I started taking them again out of fear and I now have a chest infection. So I am not sure whether the chest discomfort was down to my PEs coming back or because of the infection. I am going to carry on with the blood thinners though. When you get chest infections, do your minor PE symptoms come back? Could that just be where the blood clots may have done a bit of damage?

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  • Posted

    I got sick. Was diagnosed with bronchitis, then pneumonia. My chest and back hurt terribly, and they just kept giving me antibiotics and stuff for heartburn. Finally, after 3-4 months, I switched drs because I knew something had to be wrong. He caught the PE. That was a year and a half ago and I'm much better, but still in some pain. I'm just not the man I was before. It's like it aged me 40 years.

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  • Posted

    I wouldn't mess with that stuff, I'd go get that checked. did your doc take you off the thinners??

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    • Posted

      I phoned my gp and he said it should be fine after 6 months to come off. But my specialist has said stay on them for another 6 months. Apparently your clots are less likely to come back after a year of anticoagulation.

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  • Posted

    I had bilateral pes in November or 2016. The 9nly symptoms I had was High BP and a model prick poke in my chest. I. was told that mine where relatively small. I was on blood thinners for 6months and came off in May of 2017. After follow up scans I was told there is no evidence that I had any PEs. Blood thinners do not break up blood clots, it just makes the blood flow better and not clotting any further. Your body will naturally absorb the clot back into your blood stream. Even after your done on thinners and have been cleared of pes (dissolved), you could have maybe anxiety which can cause and mimic pe symptoms. This is just from my experience. but I have been fine the past year. I was told by my hematologist I did not need to stay on blood thinners. He said if it gives me piece of mind I can take aspirin. So I take aspirin and fish oil with omega 3. Omega 3 has a little of a blood thinning effect. So I choose this method. Thinners are a strong and hard drug for a lot of people to be on. I do not have a blood clotting disorder so my doctor didn't think I needed to be on it.

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    • Posted

      Well I definitely am anxious about the clots coming back. I know it is very unlikely that my clots came back that quick, I suspect it was the pain from the virus I have. I was taking supplements too, when I quit the thinners, but I am a bit worried to take them now in case there is an interaction. I am just taking multi vitamins and minerals with edoxaban now.

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  • Posted

    Symptoms? Where to start. I was a regular flyer across the Pacific. Australia to Dallas 50-60 times. Never had an issue. Then 2 trips ago I developed a sore left calf when I got back to Australia. It was SVT. This year we went to the USA and when I got off the flight in Dallas I had a pain in my right calf. A week later I still had the sore calf and developed severe pain in the right side of my back. I took pain killers and soldiered on. A week later my calf was giving me heck. So I visited a clinic. Two doctors dismissed it as just a 'sore calf'. A few days later I had the back pains back. I went to a clinic. At the clinic I became disorientated and feverish. I began to throw up. The doctor there sent me straight to a hospital just a mile away. They found DVT in both legs and multiple PE's in my lungs. More fever, more throwing up and HUGE bouts of pain. They said I was a 1 in 3 chance of not surviving the night. I also had fluid on the lung and pleurisy. I also had some internal bleeding and an infection.

    For me the two symptoms were the calf discomfort and the back pain. But they say everyone is different so it's hard to diagnose.

    The pain I had was a 15 out of 10. I had several pain events while in hospital and still, 7 months later, have minor pain issues in the same area. I couldn't believe anyone could have such pain and never want to even contemplate having it again.

    7 months on I'm struggling with getting back to a normal life. Fatigue and depression are an issue. My specialist think I'll be on Elequis for life!!!

    If you even think you have a DVT and/or PE insist on the tests. Yes they are expensive but so are funerals.

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  • Posted

    for me it happened out of the blue, first with shortness of breath, then rapid heart rate and hot/cold flashes along with discomfort below my sternum. I thought it was a panic attack so I tried to calm down for the next two days. On friday it got to the point where I couldn't walk two steps without getting winded. I drove myself to the ER and after a CT scan of my chest, I found out I had bilateral PE's, a clot in each lung. They used thrombolitics through catheters in my lungs and i've been breathing much better since then, though it's scaring me that i keep having discomfort below my sternum that comes and goes, as much as the fact that I had ZERO pain throughout this whole ordeal. I'm on blood thinners currently, Eliquis, but I'm afraid of a clot coming back since both my parents have a clotting disorder, and I'm 27 years old.

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    • Posted

      We fly regularly between Australia and the USA. We've done the trip about 60 times. Never an issue. I have a bad back. About 4 days after arriving in the USA I had bad back pains. I just dismissed it as my back playing up. Then I developed a sore calf muscle. After another week I went to a clinic about my calf. 2 doctors examined me and waved me on with 'just' a sore calf. A week later I had the bad back pain again. It got the better of me and my wife took me to a nearby clinic. (We were on the road touring). At the clinic I began to get bad hot and cold flushes. Started vomiting and got very irritable. The doctor sent me straight to a hospital ER just a mile away. I was in a LOT of pain, vomiting and cranky. They did several tests and told us I had clots in both legs and multiple PE's. I didn't even know what a PE was. Doctor told me the next morning I was a 1 in 3 chance of not surviving the night!! Some days later they released me from hospital and asked that I stay nearby for a week. Good thing as I developed an infection and internal bleeding. Back to hospital. A week later I was back in hospital for the 3rd time. Then after 4 weeks they allowed me to fly home.

      Apart from the sore calf I had no other symptoms. The bad back was 'just' another bad back. But apparently it wasn't. Then it set in and I was lucky that I had a good doctor at the clinic who sent me straight to ER.

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  • Posted

    mine started with pains in my right side when i breathed in, this gradually got worse over the pace of about a week. i too had hot flushes, palpitations, and fluctuating BP. Then the breathlessness became unbearable. went to hospital and had bloods taken. D dimer was really high so sent for angioCT scan. diagnosed with unprovoked PE in my right lung. i was started on Apixaban but it didnt agree with me, im now on Warfarin.

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    • Posted

      Just to complicate the subject a bit more!!

      I have been having terrific aches and pains in my legs. It really gets me down. I have had endless bloods tests all without any conclusive outcome. I mentioned to my hematologist about my cholesterol tablets. He told me to stop taking them straight away. Doing a Dr Google search revealed many issues with cholesterol medication and blood thinners. Go figure!!

      You take one pill to fix something and another to fix something else and those pills fight each other causing other issues.

      Sometimes I think throwing all my pills in the trash and taking the risk. Maybe the cure is worse than the pain?

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