I had a lot more pain for the few weeks following diagnosis than I did before. Maybe it was just my lungs healing, maybe the warfarin that made my acid reflux and GI issues much worse, I really can't be sure. Either way, for me it definately got worse before it got better. About 3 weeks after I was released from the hospital I was back at my doctor because I had so much pain in my chest I couldn't sleep and definately couldn't tolerate being in any kind of reclined position.

JennerM - did anything help ease the pain for you?

I had no pain at all on diagnosis. In fact, for the first four weeks of recovery, I was feeling pretty cocky about how good I felt and how I didn't seem to have most of the symptoms people on these boards talk about.

About four weeks out, I was pushing myself too hard to get back to "normal" and I got hit with extreme exhaustion, mild SOB, and some pain. I mean, the pain wasn't very bad (maybe a 3 on a scale of 1 to 10), but since I had never had any before with the clots, it freaked me out.

I wound up getting a repeat CT and my clots were completely gone at that point. My doctor (gently) slapped me on the wrist and chided me for pushing myself too hard. I cut back on my activity and babied myself a little more and felt better in a few days. But, I did repeat that cycle (push too hard, get more pain, SOB, and exhaustion) many times over the course of recovery, up until about 11 months out.

Even now, though, when I'm more than three years out, I will occasionally get a little twinge of pain between my shoulder blades just to remind me. But, I don't worry about it anymore.

If you have sudden onset pain and have done nothing to set it off, it is always a good idea to check in with your doctor. If nothing else, maybe it'll help put your mind at ease.

Oh, I did - it freaked me out while I was at the doctor's office and I ended up in the ER. Had a stress test - (results fine). Now I'm back home and when the pain is hitting I'm just reminding myself that all is well -- but wanted guidance on just how common that kind of pain is.

Same here, no pain prior to or upon diagnosis of the PE, but during recovery I had intermittent pain. There were times where it literally felt like a lightening bolt was shooting through my chest. I took Tylenol as needed.

Why now vs earlier, I have no idea. Could just be from your body healing.

@ lapopessa
I'll repost what I had posted before about heart problems. The chances that your pains are related to PE and 'friends. Just so you're aware---- the tests given at the ER are usually standard and don't include investigating for microvascular disease. And I sincerely hope you DON'T have MVD but it never pays to assume you don't.
Start re-post

"Misdiagnosed: womens coronary microvascular and spasm pain"

Re-printed with permission from:
http://myheartsisters.org/2012/08/1...

"These two heart conditions involve the smallest of the hearts blood vessels in coronary microvascular disease (MVD) as well as non-obstructive issues like coronary artery spasm (CAS)."

"At my last visit to our local hospital, I suspected that all the nurses were treating me as if I had an anxiety disorder [...]"

" [...]she received a further diagnosis of coronary microvascular disease (MVD) missed because most standard cardiac tests are designed to identify only obstructive heart disease in major coronary arteries."

If you[...] had normal cardiac test results during what turned out to be a heart attack, please print off her resource list below and share it with your friendly neighbourhood physicians and nurses:



Negative Stress Test Does Not Rule Out MVD - American Heart Association: Circulation: Cardiovascular Interventions

The presence of a negative non-invasive stress test does not rule out coronary vasomotor dysfunction (MVD) in symptomatic patients with non-obstructive coronary artery disease.

Andrew Cassar, M.D., M.R.C.P.(U.K.), Panithaya Chareonthaitawee, M.D., F.A.C.C., Charanjit S. Rihal, M.D., F.A.C.C., Abhiram Prasad, M.D., F.R.C.P., F.A.C.C., Ryan J. Lennon, M.S., Lilach O. Lerman, M.D., Ph.D., and Amir Lerman, M.D., F.A.C.C.


Standard Tests Dont Detect Microvascular Disease - Harvard Womens Health Watch

Heart disease, like cancer, is not one, but several disorders. Discoveries from the WISE study suggest that many women have a form of Heart disease called coronary microvascular dysfunction (MVD) that isnt detected by standard diagnostic procedures and thus goes unrecognised and untreated.

The research, led by Dr. Noel Bairey Merz at Cedars-Sinai Medical Center in Los Angeles, is laying the groundwork for better ways to evaluate and treat women with heart disease.

Coronary Microvascular Disease Can Cause Serious Problems - Mayo Clinic

Because small vessel disease can make it harder for the heart to pump blood to the rest of the body, small vessel disease can cause serious problems if left untreated, such as coronary artery spasm, heart attack, sudden cardiac death,
heart failure.

MayoClinic.com, Small Vessel Disease

Coronary Microvascular Disease is Difficult to Diagnose - PBS Second Opinion transcripts

Coronary microvascular disease is an elusive disease. It doesnt show up on many standard tests. MVD is a disease thats just as dangerous as coronary artery disease, and it increases the risk of heart attacks and heart failure. The characteristics of microvascular dysfunction include:
no obvious blockages but blood flow to the heart is still low;
vessels that dont expand or dilate properly during physical or emotional stress; vessels that spasm abnormally.

Diagnosis remains the biggest hurdle for people with coronary MVD.

Louis J. Papa, MD, FACP, Kathy Kastan, LCSW, MAEd Kim Kachmann-Geltz, Noel Bairey Merz, MD, Matthew Burg, PhD, Gladys Velarde, MD

Coronary Artery Spasm without ST-Segment elevation - Journal of the American College of Cardiology

It should be emphasized that most patients with CAS (Coronary Artery Spasm) do not have ST-segment elevation when seen in the emergency department or office with chest pain.

The important clinical point is that absence of ST-segment elevation during chest pain should not exclude CAS; the reference standard for CAS is visualization during angiography.

Carl J. Pepine, MD, MACC Professor of Medicine, Division of Cardiovascular Medicine, University of Florida College of Medicine in Gainesville, Florida.

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Vasospastic Angina and Coronary Microvascular Spasm - Journal of the American College of Cardiology

Coronary microvascular spasm causes myocardial ischemia in patients with vasospastic angina. The result suggests that coronary microvascular disease may also contribute to angina in patients with vasospastic angina (CAS).

Hongtao Sun, MD; Masahiro Mohri, MD, PhD; Hiroaki Shimokawa, MD, PhD; Makoto Usui, MD; Lemmy Urakami, MD; Akira Takeshita, MD, PhD

Coronary Artery Spasm and Coronary Microvascular Spasm - Cardiovascular Sciences Research Centre

Microvascular angina affects a large number of people. These patients have typical chest pain and some evidence for myocardial ischemia, but the coronary arteries are absolutely clean. Many of these patients are considered to have non-cardiac problems, who are then reassured that there is nothing wrong with the heart. They are sent back home with the same problem that they came with.

It is an important condition to be taking into consideration. There is a connection between coronary artery spasm and microvascular angina, particularly when the microvascular angina patients develop coronary microvascular spasm.

Professor Juan Carlos Kaski, Head of the Cardiovascular Sciences Research Centre and the Microvascular Angina Clinic, St. Georges University of London, U.K.


The ACOVA Study: Abnormal COronary VAsomotion in patients with stable angina and unobstructed coronary arteries - Journal of the American College of Cardiology

Nearly 50% of patients undergoing diagnostic angiography for assessment of stable angina had angiographically normal or near normal coronary arteriograms. The ACH test triggered epicardial or microvascular coronary spasm in nearly two-thirds of these patients.

Ong P, Athanasiadis A, Borgulya G, Mahrholdt H, Kaski JC, Sechtem U. Robert-Bosch-Krankenhaus, Department of Cardiology, Stuttgart, Germany.

Coronary Artery Spasms Often Occur At Rest - Mayo Clinic

A coronary artery spasm is a brief, temporary tightening (contraction) of the muscles in an artery wall in your heart. This can narrow and decrease or even prevent blood flow to part of the heart muscle. If the spasm lasts long enough, it can lead to chest pain (angina) and possibly a heart attack (myocardial infarction). These spasms may also be referred to as Prinzmetals angina or variant angina. Unlike typical angina, which usually occurs with physical activity, coronary artery spasms often occur at rest.

Only about 2 percent of angina cases are Prinzmetals angina. Coronary artery spasms are more common in people with risk factors for heart disease, but the spasms also happen in people who have no risk factors. Coronary artery spasms can also occur in people who have conditions that affect their immune systems, such as lupus.

Martha Grogan, M.D. Mayo Clinic cardiologist

Joan Jahnke Shares Her Story - Emory University

Joan Jahnke, a patient of Dr. Habib Samady (Professor of Medicine at Emory University School of Medicine and Director of Interventional Cardiology at the Emory Heart and Vascular Centre), shares her journey through cardiac microvascular endothelial dysfuntion with vasospastic angina:

A big frustration with many MVD patients is that our complaints and symptoms often bring us to an urgent or emergent care setting where none of our signs show on any EKG, echocardiogram, ultrasound or treadmill stress tests.

We look well, present with chest pain and shortness of breath perhaps anxious but the tests are generally negative, even the cardiac enzymes. We repeatedly return seeking help, knowing that it is our heart, but we repeatedly fail the best current technology tests.

[cave note---- obviously some of those articles will only pertain to people who have had angina or other heart problems. But not all. Many of the posts I've seen where people have gone to the ER or cardiac guy for chest pains and had just the 'usual' heart tests raise the hair on the back of my neck. Hopefully this list will give the next person something to ask their doctor about.]

In my case, PAIN was the major symptom pre-PE, stabbing, heart-stopping pain! SOB, and it was major, only started being a problem the day I ended up in the ER. By then, the PE was massive and I was considered critical.

After I was started on anticoagulant, the pain resolved but returned in full force the next day! So bad, it would take my breath away. I mentionned it to the doctor who had taken charge of me while I was in the hospital and she explained that, part of it, was due to the clots disolving. And I mentionned it again to my regular doctor once I got home, and she said the same thing. She told me that, if I felt it was something else, I should go to the ER, but that if the pain was easily managed with Tylenol, it was probably all part of healing.

I have had my heart checked a few times since my PE, and the results are normal even though the HR tends to be on the high side. They are taking any heart-related problems seriously as my dad ended up having a heart transplant in the 90s.

I tried tylenol, which didn't help much. I used a LOT of topical stuff like icy hot on my back and shoulders and it seemed to help relax my muscles a bit. I also went to the chiropractor, whch probably helped more than anything else. I remember getting home after my first chiropractic visit and thinking I could actually breathe without extreme pain for the first time. Acupuncture really helped me too.

Glad I'm not the only one! I had the same thing. No pain from my PE, but SOA for a few weeks before I went to the ER for the DVT. Lately, though, I've been having some chest pain. I never really thought too hard about the PEs (apparently I had a ton of itty bitty ones), but it's all starting to make a lot more sense now.

I don't have a lot of experience dealing with it, but I imagine as your body deals with the clots and gets rid of them, you're going to feel it more than when they were just hanging out down there. Areas that weren't getting blood will hurt when flow is restored. Best of luck to ya! And thanks for bringing it up. :)

The lungs are extremely sensitive organs, any clots etc. will cause scarring. This is the explanation my doc gave me after suffering intermittent chest pain. Mine has eased but I still get it sometimes. Hope this helps.

Hi,well l had my P.E last march, l went through all kinds of scares, l guess that's normal' Nos l'm back k to work full time since a week before Christmas and l just started her all magic to get my body in great health, holding to be long term healthy, l had a lot happen last year ,first it was my gull bladder out laproscopic, than my oopherectomy and Tummy tuck, than 7 weeks later pulmonery embolism,was off work for 9 months, now back to real live, my scares aren't s bad now ,just moving forward, chalking it up to experience, lots of trauma happened to my body last year, this year rebuild, loose weight look and feel great my new mantra 48 yrs young , feel great look great, a better year yoo hoo!!! A gone who feels the same say Whoo!!! Whoo!!

Sorry for some spelling mistakes,LM typing on a tablet,meant to say,Herbal Magic,weight loss , and hoping to be long term.

When i mentioned lingering lung pain to my pulmonologist, he informed me that the lungs themselves actually had no pain sensors in them, so all of the pain I had was from the surounding muscles and tissues (pleural sack, diaphram, etc), and that I would probably benefit from at least two deep tissue massages, cause he could press on muscles in my upper back and actually induce the same pain I had been feeling,,he actually just layed his hand on the EXACT spot all of my pain starts from, and said those muscles were as hard as rocks, and needed to be relaxed before I would get any relief,,not drugs, just massage therapy,,,so all of the time I thought the pain was deep in my lung,, I had to be wrong, due to the fact they have no pain sensors or receptors in their tissues,,but everthing around them has loads of them!!

I had the same thing about 45 days after pe - strong ache- pain right down the center of my chest. Stress test showed no problem and it disappeared for good about 30 days later.
My theory is that I was suffering withdrawal from Xanax. I never took it before but started using a quarter mg 1x per day during hospital stay. I thought that was so little it couldn't do any harm. But I read in the benzo forums its not how much necessarily, as how long and I was using it for 45 days .
Also this kind of pain is self reinforcing. The more you stress about it the worse it gets....
I hope your feeling better. 5 months out I would definitely agree with all the posters who comment how its 3 steps forward and 2 back Both physically, and emotionally. But that, s still recovery!

wish 412 wrote and excellent explanation which I'll repeat here:

"When i mentioned lingering lung pain to my pulmonologist, he informed me that the lungs themselves actually had no pain sensors in them, so all of the pain I had was from the surounding muscles and tissues (pleural sack, diaphram, etc), and that I would probably benefit from at least two deep tissue massages, cause he could press on muscles in my upper back and actually induce the same pain I had been feeling,,he actually just layed his hand on the EXACT spot all of my pain starts from, and said those muscles were as hard as rocks, and needed to be relaxed before I would get any relief,,not drugs, just massage therapy,,,so all of the time I thought the pain was deep in my lung,, I had to be wrong, due to the fact they have no pain sensors or receptors in their tissues,,but everthing around them has loads of them!"

Also check with your cardiac doctor just in case.