1. Community
  2. Chest and lungs
  3. Pulmonary Embolism

Continued discomfort after a PE

Posted , 30 users are following.

anyakesh
anyakesh

I had a PE 2 years ago but I still get intermittent chest pain in my upper chest Even now. It is not brought on by exercise and does not go away when I put pressure on the area. I never had this before the PE. Has anyone else had a similar experience to myself?

1 like, 58 replies

58 Replies

Prev Next
  • emmarr
    emmarr anyakesh

    Posted

    After the birth of my Daughter in 2010 I was diagnosed with bilateral PE (via ct scan) and swine flu following a difficult birth and blood transfusion. I was pretty poorly and don't really remember much about the symptoms but ever since this I must've caught every cold/virus going and always seem to get it worse than my partner and Daughter. My GP said this was probably due to the Scar tissue in my lungs caused by the PE's. I did have some chest pain intermittently over the last couple of years but nothing that I worried about that much. But I was diagnosed with PE again at the end of May this year after really bad chest pain and shortness of breath. I spent 9 nights in hospital, was discharged then the chest pain got worse and seemed to be different from the pain I was getting when I was diagnosed. I went back to hospital had a chest x ray which came back clear but tested positive for infection from a blood test, they kept me in overnight and prescribed a high dose of antibiotics (Clarithromycin I'm allergic to penicillin). My heart is fine. The pain I have now in my chest is more painful than the PE and seems to move about rather than stay in one place. I've had plenty of chest infections but never one that has felt so painful. I was in so much pain this morning that my partner called for an ambulance and I went to hospital for the third time, they advised that I was on the right antibiotics and the pain was just a combination of PE, chest infection and anxiety. I have been really worried about the whole thing. They didn't keep me in but advised that if I was still no better on in 4 days to go to my GP to get different antibiotics. I'm hoping that the chest pain will settle down as the antibiotics start to work, I've been on them for two days and the pain has not got any better as of yet. My chest hurts at the front, sides and back. My GP has referred me to a respiratory clinic so I'm hoping they might be able to help I will just have to wait and see. I've been so paranoid about the chest pain thinking it is something other than a PE and chest infection, it's really nice to hear similar stories. 
  • anne31039
    anne31039 anyakesh

    Posted

    I had a PE in my R. lung  a year ago.  Since that time I've had pain in the same area as the pe radiating to my jaw.  An EKG showed I had old MI so we thought maybe this was some strange Angina and my Doc gave me Nitroglycerine.  A cardiologist said it isn't angina but pain from the scar tissue from the PE.  The NTG  works though and the docs think it is because the NTG is a vaso dilator.  I sure wish the doctors would have warned my about the post PE pain.  It is apparent from the questions on this website...that no one is warned about this.    
  • Supertractorman
    Supertractorman anyakesh

    Posted

    Having been 9 months since my first PE and 1 month from my second, I have continued to get chest pains often similar to the ones I had in my heart attack for no reason and the pains going into my arm pit. Also suffer pain at times in my calf. If I take my Nitrolingual spray for heart pains it makes the pain and breathing far worse.

    Am waiting now for some lung tests in Mid March so will hope something is found then.

    I also believe there is a big review to take place soon on the merits of Riveroxaban  versus  Warfarin so maybe something will come from that.

  • -.a-way_forward
    -.a-way_forward anyakesh

    Posted

    I've had DVT and PE last year. I've been taking Rivaroxyban for past 6months. I've requested a blood test to try and find out the cause of my condition (as I want closure), the test is booked for the 17th May.

    My doctor told me my blood must be clear of anticoagulant medicine in order to take the test.

    I've voluntariy stopped taking rivaroxyban since 1st May, though I plan to restart the medication after the 17th and until I get blood test results and recommendations from my doctor.

    I've made tangible progress in my diet and exercise. I hope my blood does not clot again in the coming days.

    • -.a-way_forward
      -.a-way_forward

      Posted

      Been feeling incrementally worse for wear these two days. Having foggy head, dizziness, increased resting heart rate. Tight feelings in my inside thigh, slight restriction when taking deep breaths; the symptoms maybe in my imagination, maybe not.

      I've decided that its not worth the risk to go without rivaroxyban for another 12 days. I don't feel any shame nor sense of failure for continuing with medication. I accept my blood is prone to clotting without medication.

      I will continue to focus on a clot friendly diet and exercise.

      Take care all.

    • canadagal
      canadagal -.a-way_forward

      Posted

      Hello, I had hundreds of PEs in both lungs 3 years ago.  I was started on warfarin and must stay on it for life.  They were unprovoked and no definite cause.  I had severe pulmonary hypertension as well, which is now resolved.   As far as treatment goes, rivaoxyban has not been tested for use in PEs only atrial fib.  Warfarin is the choice of treatment.
    • sandeep58634
      sandeep58634 canadagal

      Posted

      did you say hundreds??? How are you still alive???? I had one 3 weeks ago now i am on Paradaxa and was shooting lovonex in my stomach for a while.  And get this i had a DVT in my leg in september and was put on Warafin then on december 10th called and said i didn't need to take it anymore that i was done then 40 days later i had a PE in my lung and almost died but i recognized the pain and went straight to ER.  Where do these dr.'s do their studying Frosted Flakes?? Had i not been taken off Warafin i would've been fine....right?

  • shelley2309
    shelley2309 anyakesh

    Posted

    I had a bilateral pe sept last year I started at gym before xmas and got a bad pain under my breast bone worse than when i had the clots,which lasted for about a week. had a infusion scan which is all clear so no further pe. I think it's just recovery and the lungs healing. Still have on and off pain
  • nixy_70361
    nixy_70361 anyakesh

    Posted

    I too have just recently been diagnosed with PE. I was put on blood thinners immmediately and have been taking them now, twice a day, for little over a month. 

    There are days that my chest really hurts I am short of breathe.

    This is very terrifying because I always think I'm having a heart attack because the pain also comes with chest tightening.

    My health isurance is in the process, and so I have had to result I have going to the ER 6 times this year for this very problem. The doctors in the ER keep telling me that everything is "OK" and to keep taking my blood thinners. Which I absolutely will do. I am just unlclear if it's normal to have these symtoms, after taking my blood thinners for over a month. 

    I'm certain I need a specialist to get a clear and concise answer. It's all just so scary  to have to keep gping and to not be clear as to why this is a frequent occurance.

    • -.a-way_forward
      -.a-way_forward nixy_70361

      Posted

      Hi nixy 70361,

      After the noac/anticoagulant loading phase, (the state when your body has consistent viscosity of thinner flowing blood) the dormant/residual/undetected clots whatever shape/s or form/s stop growing and or forming. At this point the clots may begin to dissolve/get reabsorbed or even break off in bits and pieces of any size and travel to another location for reabsorption, to dissolve and/or cause disruption in nutrition/bloodflow- hence worries, pain, uncertainty, anxiety etc, etc.

      So it's very important to be careful and look after yourself the best way you can. Do some research, speak with genuine people that have had large & small clots etc....it's an unfortunate killer, but it can be under control with better cognition and care.

      Here's an analogy of incompetence where professionals and appropriate authorities work within the Health & Social Care Act...

      Case A- the supervisor

      A person with a serious pulmonary disease shortness of breath, pain when breathing (an ex smoker) without guidance gets a job in an asbestos cutting factory that has no health & safety policy, no manual handling recommendations, and no requirement for personal protective equipment or breathing apparatus, everyone in the factory is a heavy smoker. Wrong place, wrong time, wrong people.

      Case B- the manager

      A person has been diagnosed with 3 large Dvts in both legs, and one small UEDVT in right shoulder, is prescribed NOAC. A week later, the person gets drunk and decides to go on an endurance run, much like a marathon and gets Acute PE and dies out of hospital due to 'natural causes', whilst on a UKMI noac register under a NICE guidance.

      This person leaves a consultancy- 50 employees, a buy-to-let 120% mortgaged no.11 property portfolio, 13 children under 16 in private education, three civil partners and an estranged wife, pet dogs, cats, a large catteries, kennels, goldfish. all of whom were reliant on the deceaseds work and credit loan facility for day to day cash flow for food, heating and utility expenses.

    • TGrove
      TGrove nixy_70361

      Posted

      Hi Nixy,

      I am very similar. I had a PE diagnosed (after being missed diagnosed for about a month) now I am on blood thinners (Xarelto) but continue to get the chest pains and chest tightness that I did prior to the blood thinners. The worst part is the chest tightness and pressure, it feels like somebody sitting on my chest. I actually went to the ER one night, but everything checked out, so they just feel like you're wasting their time. When will this go away?

    • acmills21
      acmills21 TGrove

      Posted

      Hi all,

      I have had numerous trips to the ER over the past 1.5 years for fear of having another PE. Thankfully, I have checked out fine, but the pain persists. Quite frustrating.

    • sandeep58634
      sandeep58634 nixy_70361

      Posted

      I'm going through the same thing.... i had my PE 3 weeks ago and i feel terrible and have been back to the ER many times as well....i'm there with you.....i feel everything you are going through.....We should all come together and have a forum where we can see each other i think that would help....the doctors told me 3 to 6 weeks so i'll give them that but i am going to be on top of this because this is no kind of life to live

  • acmills21
    acmills21 anyakesh

    Posted

    Hi,

    I know this was posted some time ago, but I am glad others are having the same problem (not that I am happy we are all suffering). I had a PE in my left long September 2015 and was hospitalized. My bloodwork came back as being Homozygous for Factor V Leiden. This means I am on blood thinners for life because I have a 50 to 80 fold increased risk of thrombosis.

    I have been suffering with chest pain since the PE. I've seen numerous doctors, from orthapaedics to internists. Finally, I found a hematologist who specialized in my disorder and he told me the residual pain is most likely a result of the scar tissue in my left lung. I am still struggling to handle the anxiety this causes me and have not found a way to fix the pain.

    If anyone has further input, please let me know!

    • -.a-way_forward
      -.a-way_forward acmills21

      Posted

      Hi, 

      from my experience and interpretation, the residual pains in your left lung, is like a homing beacon for your immune system to try and repair the damage the pain is symptom of, and also dissolve the clot by enabling fresh blood to flow around it. The may also be nerves in area concerned, upstream and downstream.

      Good diet, plenty of hydration, and try to take full breaths now and again, the sharpe twinging pains were (for me) unbearable and exhausted me, tired all day long just breathing. 

      I used to sit and watch tv/computer with my feet raised, making it easier for my heart & lungs to work, for many months on end.

      I'm a lot better now.

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.