It has been a year since I had my PEs. I have been off blood thinners since the end of August.
About a month ago I suddenly had pains when I breathed in. The pains were mid-chest on the right side. I went to the walk-in clinic after work. The PE checked my blood to see if I was clotting (I was not). Then I was told I had pleursy. I was given an antibiotic and sent home.
Tomorrow I am going to my GP to checked it out and make sure.I never had chest pains before this.It will be interesting to see what your Doc tells you.

Hi

To be honest I have been given so many different opinions for my chest pain and have come to the conclusion that really nobody knows.

I have been to A/E a few times now and been admitted to hospital twice in the last 6 weeks. Whilst they are very good at telling me what it is NOT nobody can tell me what it is! It is sooo frustrating and is making me feel so down because sometimes the implication is there that I may be imagining it.

Seeing as on the last 2 occasions I was actually sick, sweating and required morphine for the pain I must have some imagination!

Anyway the explations I have had are-further small PE (you are on warfarin anyway so dont worry!), infection, muscle/muscular skeletal pain, pluerisy, gallstones (none on a scan) kidney stone/infection. Now investigating for lupus as this causes general inflammation of just about anywhere incuding the pluera coving the lungs.

For myself I still think my pain is lung based and have got to the point where I almost wish they would find Something that would give me an explanation. Not a PE though lol!

For now I am just living with it and take the attitude that they havent found anything serious with all the investigations so that takes some of the worry off.

I am determined not to go near a hospital with it again unless I really have to or I get some other symptoms.

Can really relate to how you feel though and I hope you feel better soon.Hugs,

Kate x

My Hubby says my chest pains are because I need a little more attention, which he is probably right but he still rushes me to the ER just to have me checked out. Hubby is sure I'm an adrenaline junkie and just need the adrenaline rush. (He may have hit on something there hehehehe) Actually every time I have had serious chest pains I have had the unfortunate PE's to go along with them. Trust me on this I'm not that much of an adrenaline junkie and thats not the adrenaline rush I was quite looking for.

This discussion is just what I needed, as I am still having chest pain and leg pain, but I have been told that I have had all the tests (not true, no CT scan in UK) and that everything is fine. My Dr said today that we will never be able to tell what these chest pains are - which I feel quite mad about. She said I need to move on from the PE (which I agree with) and then said it was 'Probable' anyway. I felt totally dismissed, like Kate says,I felt she was saying I probably imagined the PE!!!

Anyway, it is reassuring to hear that these pains are normal in us PE sufferers, but it still makes me so mad when our expereinces are belittled (mine anyway).

Still, good news is that I am nearly six months off Warafin and doing much better. I even went to London on a first weekend away without my hubby, who is my crutch - I guess psychologically it takes longer to heal x x x

I am at week 7 post PE diagnosis and I am beside myself with the all that I have been through. I too am suffering pain and am on a fair bit of analgesia including morphine at night. I have only just been discharged from Hospital and am really struggling health and fitness wise. My OT did not want me to leave hospital, but after 6 weeks I had to go. My dr's/ specialist have assured me that the pain I am experiencing can not be the PE, because that pain does not exceed 2 weeks and what I am saying is chest pain must be according to them back pain, even to the extent where they performed an spinal MRI. I am over it - I am looking forward to being well, being back with my kids and getting back to work - and it is just not happening

It has been 8 months since I had bilateral PE's. I still have pain when I take a deep breath. Some days I hardly feel it at all, and other days it is worse. At around 6 months my Hemotologist repeated a ct scan that did show some scarring. Still hard to get a firm answer from any doctor about the pain and if and when it gets better. I don't think any of them really know! Very frustrating!

As much as I can do at this point is a google search, which turned up...
http://www.medhelp.org/posts/Respiratory-Disorders/Continuing-Pain-After-Pulmonary-Embolism/show/282044
http://www.medhelp.org/posts/Respiratory-Disorders/Chest-Pain-after-Pulmonary-Embolism/show/284875
http://dailystrength.org/c/Pulmonary_Embolism/advice/2344521-pain-my-side-4

Anecdotally, it seems rarely does a week go by here that someone is not anxious about continuing, returning, or new chest pain many months or years out. The Runner's World forums have similar posts from active people who have been affected and fear for not only their lives, but their active lifestyle.

HI All, I am a year and a half out. Still have chest wall pain and some chest pain as well as SOB off and on. I have been told it is because I breath wrong -using my chest instead of my abdomen -which I did do for a while due to pain, but I purposefully make sure I am breathing correctly now, I have been told that I have Chronic Hyperventilation Syndrome -where you breath a lot of small shallow breaths and feel SOB and need to sigh and yawn a lot- , and I have been told that it is the Fibromyalgia that I developed after the PE- the chest walls are two of the tender points where pain tends to accumulate, and I have been told I have regional pain syndrome -so take your pick. Or you could be like my old PCP and tell me that since he doesn't have the knowledge about it, and has no intention of gaining that knowledge, that it must all be in my head! All doctors don't know everything -they couldn't possibly, but the good one's will admit what they don't know and be willing to try to broaden their knowledge base. Blessings, Teri
P.S. Did anyone read Dr. Orange's blog on things that drive PCP'c crazy? I'm sure WE are some of their favorites that they love to see coming through the door.

Yes, read Dr. O's blog. The water bottle part was crazy. At least Dr. O said that she herself carries one around.

I saw my doc today and got a diagnosis for my chest pain!!
She is the best.

She she diagnosed me with costochondritis.
It's basically inflammation of cartilage around the ribs.
She said it is pretty common, even with people who have not had PEs.

She wants me to take advil to get the inflammation down (even if it messes a bit w/ my INR), use heat and massage.

I am so happy to have a word to explain the pain.

Here's more on costochondritis:
http://www.mayoclinic.com/health/costochondritis/DS00626

Hey Beecute,

I also have costochondritis, but it is a bit confusing because the pain is similar to my PE. I was diagnosed with costo several times before they actually found the PE. Five days before I flew to NYC I had the worst case of it - then in NYC I had the PEs, but I am not sure now whether I had PEs before I flew or was it the costo and flight which caused the PEs - I do not think I will ever know.

What I have learnt is any pain I am worried about - go to A and E (ER). I guess the main difference between costo and my PEs was the sheer amount of anxiety, SOB and sense of doom I felt. Still, always get checked. Glad you have got a fab Dr. x x x

Dawn,
I wish you could see my doc. She really is amazing.
I know it's only probable that yours is any good. ;)

I agree that it is very confusing- especially since costo can cause pain when you breathe...aaak! What are we to do!?

I was diagnosed with a PE in December and it resolved itself a month ago. I still have chest pains however, even though my CT scans/X-rays don't show evidence of scar tissue, or myopathy. Any ideas as to why I'm still experience this pain?

Did you have a pulmonary Infarct associated with your embolism?

nope, no infarct. sorry, confused it for myopathy.

I'm 3 years on from a double PE and have chest pains on and off all the time. I get repeated chest infections where the scarring on my right lung is and have been told to expect it - but it's never really been explained; seems like a theme runs through all thsi in that things aren't explained to you and that PE's are somehow 'less' than we think they should be. I've just had another infection and this time it's knowcked me for 6. Takes longer each time to recover and limits what I can do with my life. Going back to my Doctor next week to see if I can be referred to a lung/pulmonary specialist as I never did see one when it happened. Just found this site and am so glad I have. Good to know there are others out there feeling the same, though I wish we didn't!
Rachel