Pulmonary Embolism Support Group

By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.

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chest pain 14 months on.

deleted_user
deleted_user
Hi Everyone! I wish I'd discovered this site a year ago, but very glad that I have now as I feel I'm going a bit mad!I had multiple PEs (right lung) in November 2007 following a trip to Peru. I was treated with a clexane and/or warfarin for 6 months, and all my genetic tests etc have come back normal.Being in the UK I was not offered a scan before coming off the warfarin,despite still getting pain. The chest consultant discharged me when I was still complaining of pain (with vague explainations of pleural adhesions/scarring), and the haematologist, while very supportive, could offer no explanation for my continued pain. The mild right sided chest pain continues, always in the same place, and is exacerbated by cold air and cardiovascular exercise. Just before christmas I got the chest infection which was circulating around work, and had bad pain in my right lung which felt like a milder version of the pain I had when I had the PEs. Foolishly I didn't go to A&E, but to my GP who listened to my lungs with a stethoscope and proclaimed I'd definitely not had another PE but was getting pain from coughing. The pain is back to what it was like before the chest infection and I often wonder if I'm imagining it.

Does anyone else have this dull, achey chest pain on the side of their PEs this far down the line? Has anyone had recurrence of bad chest pain with a chest infection?

Thankyou so much - I suddenly don't feel alone anymore!
kate37
kate37
Hi

I could be reading my own story here! Had my PEs in March 08 and have had more or less continous pain ever since. Its not always bad but is always in the same place. I find it is worse when I am tired or been doing too much.

Like you I have never had a proper explanation or reason for the pain and have come to the conclusion that the doctors probably dont know either!

I try to look on the positive side in that I know what my 'normal' pain is but seek advice if it gets worse or changes at all.

I am due to see a my haematologist in March who specializes in PE so am going to ask him if he has any ideas

Will keep you posted. Yes this is a great site. Found it a few months after my PE and it is the best source of info and advice as there is always someone who has been there and done it! In the nicest possible way that is

Take care

Kate x
deleted_user
deleted_user
Hey Cambodia,

is nice to meet you. Yeah its shame you didn't find us sooner!!

I had my PE about a month before you, and I still get the odd twinge. And I discribe it with the exact same phrase you just did - a dull ache. I do get the occasional stabbing pain but its mostly just uncomfortable.

I'm in the UK too, so similarly had no scan before coming off warfain.

It's a strange one. I think it's very common to feel pain for a long time as the lung may still be healing - but 14 months is a long time.

So how are you feeling now, over a year on? My recovery took a long long time, but am doing really well now - I'm currently training for a half marathon which is in about 8 weeks!!

x x
deleted_user
deleted_user
Hi there and welcome to the best source of info, understanding, sympathy - whatever you need you'll find it right here!
I really sympathise with you still having chest pains but I never had any pain in the first place - just increasing breathlessness.
I've read lots of posts on here though from people who do have the very same pains that you describe so try not to worry as I think its pretty common. I'm sure there's nothing to worry about - take care - from Sandi x
deleted_user
deleted_user
Hi Cambodia, My PE was in Oct 2007. Still have chest pain -worse at night or with exercise -hurts just to touch my chest. Heat helps, sometimes lidocaine patches if it gets really bad. I just had my first acupuncture treatment about a week ago -I have to say it has helped a lot -the pain is not totally gone, but better -and I feel better in general -better sense of well being is the best way I can describe it.
Hope this helps! Teri
deleted_user
deleted_user
I was diagnosed with PE's in October 2007. I had blood clots in both lungs, but the blood clots in the right lung caused an infarction. It's now 15 months later and continue to experience lung pain. The pain sometimes feels like it did when I was first diagnosed but not as severe. It's always in the same area of the infarction, it gets worse when it's cold outside or when I'm stressed or tired. I sometimes lay awake at night hoping it's not another PE. I know in the past couple of months I've had Pleurisy (not sure if I've spelled that correctly.)

I don't think there has been enough research of patients after PE's. It's great that there are places like this so that others can share their stories, fears, ask questions.

Thank you!
ShilosMommy
ShilosMommy
I just want to say thank you for posting this question. I'm kind of in the "middle stages" of recovery, I guess, because it's been about 5 months since my PE. I had a massive amount of clotting, as well as some massive clots, in both lungs, and had a procedure that essentially immediately cleaned up all of the clotting. Which meant in the beginning I felt like I was doing a little better than people in the same stage of recovery, but now it's all evened up at best. I'm still experiencing daily pain. My surgeon thought 4 1/2 months ago that I would only have another month of pain (from that visit). Well, here I am, still with pain, and getting very frustrated. I feel like I must be doing something wrong in my recovery since everyone seems to think I shouldn't be having pain. So anyway, it's really helpful for me to see that there are others in the same boat. Not that I want pain long-term, but I'm just glad to know that it's not uncommon if it happens.

I hope you will continue healing and feel better soon.

Sarah
deleted_user
deleted_user
I am so glad I found this site. It is so good to know that I am not crazy. I also have had pain since having bilateral PE's in Aug. 2008. My hematologist says she does not know why and that I should heal completely. I had another CT scan last week and got the results today that showed scarring. My pain seems to get worse with increased activity. This site is an absolute life saver for my mental health!
deleted_user
deleted_user
Hi
I get this too, i had mine in dec 2007, so its been a while. I still wake up in the middle of the night with wierd chest pains,tightening pains. I don't have an answer either. it is scary...i am always worried its another one.
More2be
More2be
Being in USA, I got 10-month follow-up scan at the hematologist's office, where they found evidence of chronic PE. I beleve that, essentially, chronic PE is old and possibly calcified clots that continue to obstruct somewhat, though not being as dangerous as acute PE. Likelihood of chronic PE is greatest if you had the kind of PE that formed over the course of days, weeks, or months. One cannot rule that out.

I did find an article that appears quite a bit like your case... http://www.netwellness.org/question.cfm/55583.htm .
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