Is this normal?

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Hi,

I'm new to the group,

I was rushed into hospital on April 1st, where they found I had a massive saddle pulmonary embolism and was given IV thrombolytics, in hospital for 10 days and came home on rivaroxaban.

But still after approx 18 weeks my chest pain is stillso bad, why is this?

My doctor has given me 30mg Zomorph (slow release) morning and night plus Oramorph to use as a break through pain relief, when need, which tends to be around 5ml every four hours,

I'm on other medication due to on going other health issues.

Can I just say thank you for letting me join,

Plus if I can help anyone I will gladly. ??

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13 Replies

  • Posted

    Hi Elizabeth I was diagnosed last August. So now a year on and I still occasionally get pain. mostly lower back now. This is a very long slow recovery. Some people are able to recover quicker but you really have to take it easy little steps until you grow stronger. You have suffered major trauma. It does get better each day. Good luck. This forum is fantastic. 💐

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    • Posted

      Thank you so much for your advice.

      I'm glad you are getting better.

      Can I ask you why you get your pain in your lower back?

      as mine is across my chest area.

      Sorry if I'm sounding stupid. 🌺 

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    • Posted

      😊😊 During first part of recovery I had the crushing heavy pain across my chest. I think the lower back pain/ache is probably due to lack of exercise ,bad posture and weight gain which are all part and parcel of this illness. I am pleased to say I am tackling all those issues now. Have lost the weight I put on and walking further each day. Another issue was anxiety which this forum helps with . xx

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    • Posted

      Hi elizabeth,

      People experience pain in many different places after a PE, Like you I am new to all this, I'm coming up to 4 months after diagnosis and I still experience pain in the original place of the clot (left calf muscle) leg still swells up every now and then, I get the text book PE chest pain but because I also suffer from angina I get the crushing/heavy feeling in the chest, centre radiating to left side, now depends which emergency doctor you speak to their opinions will vary, some say heavy/crushing chest pain is non PE related while others say it is.

      I still get breathless quite easily even having a simple shower or getting up out of a chair, in the last 2 weeks I have been getting the (text book) stabbing type chest pains and back pain, upper and lower, different pain to my angina pain, does get rather painful when both pains present at the same time and often takes me off to the emergency department because one is just as dangerous as the other.

      The reason I'd say people experience pain in the chest and back is because the closeness of the lungs to the heart , this is why people should get checked out when the pain comes back intensely as PE's tend to make the right side of your heart work harder, that's what they had found with me and I have seen others here with the same problem. If in doubt always go see your GP and if it is so bad that you can't get to your GP get seen in the emergency department.

      The answers that were given to me when I asked my GP and other doctors concerned, is, recovery is slow, breathlesness and pains generally take 6 months to over 12 + months to resolve from PE's They say we are safe if we continue to take our prescribed blood thinners, but as we know the laws of science doesn't always work that way for a lot of people. The emergency doctor did tell me that If I ever had a fall, collapsed etc etc and hit my head not to ignore it and to get into the emergency department immedietly because there's a risk of a bleed into the brain,  or you are vomiting or continually coughing up blood . Vomiting or continually coughing up blood can happen to some people who haven't even had a fall. This is where doctors have to decide whether it's the result of original or another PE or a side effect from the blood thinners.

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    • Posted

      Thank you Samuel,

      That does explain a lot and my GP is great, if she isn't visiting me, she rings me once a week,

      I know I'm lucky in having a understanding GP.

      My consultant has booked me into having two more CT scans,

      First is CT angiogram pulmonary 

      Second is CT addomen and pelvis with contrast.

      He said the first was to see how much of the PE is still there and the second is to check for internal bleeding.

      Thank you for your informative answer, which is very helpful 🌺

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    • Posted

      That makes sense,

      Yes I've found I've put a lot of weight on but I think it's to do with lack of excise, as I'm usually in my garden and allotment,

      Which looks like a jungle at the moment 🙄

      Plus the extra treats my children buy me doesn't help, mind you it's only me that's eating them.

      The Anxiety I'm used to as I have suffered from that for years.

      Thank you again and I hope you feel better really soon 🌺

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    • Posted

      Hi Elizabeth, I've been reading that recovery really depends on the individual, just try and listen to your body and do small things when you feel up to it. I'm just over a week since being diagnosed with extensive small clots in both lungs. On Fragmin injections twice a day. I can completely relate to your anxiety as I've had it my whole life, got an abdomen and pelvis scan tomorrow that I'm really really worried about.  I think a lot of people that have PEs and can have an elevated anxiety level, I've been almost unable to eat for a week and haven't really left home. I'm sending you lots of positivity and good wishes and hope you start to feel better soon. 

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    • Posted

      Hi,

      I'm sorry to hear of everything you are going through,

      Yes it's really is scary and depending on which doctor or consultant you see, they all have different opinions/answers.

      Which is why I joined this group to talk to real people that had, have and are also still dealing or should I say trying to live as normal a life as we can after a PE.

      I know the one thing that has been said to me by numerous consultants and doctors is that I'm lucky to be alive.

      And I think this should be said to everyone on this group that you are all lucky to be alive as so many PE's are found  post-mortem. 

      My thoughts are with you when you have your scan and I wish you so much good luck.

      Please try to eat, even small amounts as you need to keep your strength up as coping afterwards with any PE's is exhausting.

      Take one day at a time, baby steps as they say.

      Thank you for your lovely message.

      Sending warm hugs and get well wishes too 🌺

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    • Posted

      Thanks for you lovely reply Elizabeth. 

      It's so exhausting all this, fine one minute and the next just want to get into bed. 

      My GP is not so great and fobbed me off with anxiety 5 weeks ago when i was having terrible hot flashes and pulse was 120. 

      I suppose we just got to take it easy and try and do small things when we feel up to it. 

      All the best smile

      When is your andominal/pelvis scan? 

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    • Posted

      Hi hun,

      My follow up CT scans are on the 21st August,

      I'm sorry to hear that your doctors are not as supportive as they should be.

      Anxiety is horrible, you worry about ever little thing and then worry more, 

      I know I'm the same,

      I even worry that I've said the right things on here,

      The PE does make the anxiety worst and try not to cut yourself off from friends and family.

      It's hard like you say to even get out of bed some days.

      Try and rest and please do eat something,

      Please call me Liz if you want to.

      I'm not sure if 'Pacman' is your name, which is why I haven't used it. (Sorry)

      Please look after yourself 🌺

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    • Posted

      You are so lovely Liz and thank you for you lovely replies. 

      My name is Paul.  I have just called up the hospital to ask about the coughing up blood and just waiting for their call back. These forums are great for talking to others who have had PEs, the doctors at hospital really didnt tell me anything other than to inject myself twice a day lol.

      Anxiety really is a horrible thing and like you I suffered it for ages. 

      I hope you start to feel better soon and thanks again for you caring replies. x

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    • Posted

      from what i have been reading about other people Liz it's a real gradual process getting better and we have to take it easy and listen to our bodies. feeling quite hungry now so might take a slow walk to Sainsburys and treat myself to the biggest bar of chocolate i can find lol

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    • Posted

      Hi Paul,

                   I'm really glad you rang the hospital.

      Well done,

      I know just calling someone for advice can also be hard.

      Fingers crossed you get someone that understands what you are going through.

      My belief is you treat people how you want to be treated.

      I agree these forums are great as on here we are all here to support each other as we know how it actually feels like to have a PE, not only physically but emotionally as well.

      Take care hun and I know I've said it before but please try to eat.

      Warmest wishes 🌺

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