For almost three years now, three doctors have tried to figure out what is wrong. If I stand for a long period of time, I get severe chest pains in the area of my heart. Sitting for a time eases it. I do not have issues when lying down. Most Pericarditis sufferers find that the worst position.
I combine sitting, standing, walking about and mild to moderate physical labor everyday at work. Within two to four hours the pain starts. By the end of the day, I cannot stand for long. The pain is intense.
The only thing that has provided temporary relief is Prednisone. But it takes several days to a week to kick in. Then I have to taper off. And it returns. The Prednisone has worked both times I took it. But only a few days relief.
It seems like Pericarditis. But also seems opposite situations brings on the pain and relief.
Have had multiple CT scans, Echo Cardiogram, ECG, blood works, all say I am healthy. Heart, lungs fine. Have not received bone scan results yet.
Anyone had this sort of pain and found the cause was not Pericarditis? What was it?
What do you mean when you say “area of my heart”.
Does the pain seem to be in a band, going from your back around to your chest? Or vice versa?
Hurt with breathing in or out? Pressing anywhere worsen or relive it? Other specific movements? (Other than sitting for a while.) Exact location? Other things that occur around the same time eg dizziness lightheadedness fluttery sensation, belly pain, breathing faster, tingling anywhere, nervousness?
Not an adult doctor but my WAG is that what you describe is not recurrent or chronic pericardititis. Steroid responsivity is not much help diagnostically.
I had Pericarditis. It was treated with an anti-inflammatory, aspirin to be specific.
Area. About three inches above bottom rib on my left side. About four inches left of center. Pain is behind the ribs. It does not spread much at all. Always in the same spot.
Breathing, moving. Very seldom, I will get a quick shot of pain in that spot due to movement. But it is random as to what movement. It does not trigger a prolonged period of pain. I can stretch, twist, breath deep, completely exhale without causing pain, or worsening the pain when it is occurring. However, if standing, I can cause a severe increase in the pain by jumping up a bit and landing hard. It causes a severe stabbing pain.
I have no other symptoms during pain.
At work. I am suffering it quite bad by the end of the day. In the last couple hours of work I do a regular chore that involves a variety of physical labor. I am on my knees in a small room, moving 144 batteries in and out of a device. At that point it eases due to position. In spite of increased exertion. Then I take the failed batteries and repair them. Standing at a work bench. The pain quickly increases again. I have to stop and sit often.
Aspirin. A three week regime of very high dose Aspirin, did not work. Nor Ibuprofen.
So again, not an adult doctor … I was thinking maybe the answers would push to a chest wall source but not so much so.
So to differential - normal EKG various labs and imaging inclusive of chest CT focused looking for pericarditis; pain that is intermittent but occurs more with stretching things out and sounds like it has something inflamed that can be shook (that pain with jumping in the context of abdominal pain is a good sign of appendicitis for example). Does not sound like anxiety related (not uncommon). Wrong location for aortic source I think but always got to worry about aortic dissection presenting weird, under diaphragm would be referred to shoulder … I’m wondering esophageal? Maybe some esophagitis with a small dissection and reactive inflammation?
Adult med experts? All caveats - none of us are the OP’s doctor and have not examined him or his chart. He should continue to pursue care with his team who are responsible for his care. This is speculation based on limited information not medical advice.
In this type of situation - three years of a mysterious but evidently benign condition - I often resort to saying something along the lines of, “We can’t tell you what it is but we can tell you what it’s not”.
Thanks for all your interest.
More background information.
I have had Crohn’s Colitis for 45 years. Over the years I have had similar chest pain. But very isolated. Again, when standing for some period of time. Maybe once every few months. It was not chronic as it is now. It would go away after 10 to 15 minutes, and not recur for a long period of time. I thought it was some sort of cramp, spasm. My pain estimation is pretty warped. After such a long time with Crohn’s I consider a lot of pain to be minor. At age 30 I had a Colectomy? Most of my Colon removed, but still intact mouth to asshole. Did well for 30 plus more years. Had that very intermittent chest pain those years.
There is a slight possibility that I was an early adopter of Covid 19. Slight. Or just a very bad flu. It was bad enough that I was on the verge of going to the emergency ward. Made it through.
It was in the weeks following that the chest pain became a constant thing. The first instance did cause me to leave work and go to emergency ward. I thought it was a heart attack. Since then it has been a constant.
Of course Crohn’s is an inflammatory disease. But for so many decades it did not present this daily specific pain. About a year ago I had to undergo an Ileostomy. Before and after, there was no change in the chest pain issue. Although the IV administered steroids did completely stop the chest pains for the period of my hospitalization for this surgery. The pain stopped completely within 4 days of IV Cortisone treatment. Of course it also ceased during recovery. Due to inactivity for quite some time.
But it returned upon normal activity.
It is slowly increasing. I find it will also begin at a low level even while sitting. Especially if I am doing a lot of actual work while sitting. In general it is starting earlier in the work day.
I personally suspect it is Pericarditis. But I am hoping someone has an alternative diagnosis that fits these symptoms. Something that does not require open chest major surgery?
My current Doctor is at least being aggressive in trying treatments. Cardiologist did nothing for two years. Current Doctor may finally request an MRI. But that could take a very long time to occur.
Yes. They have told me a lot of what it is not.
I am in surprisingly good health, in spite of things.
If it is not finally diagnosed and hopefully treated. I may just seek pain relief.
If I take just one pain pill, say at noon. Only 5 days a week. Will that preclude any risk of addiction to a pain medication?
This sounds maddening.
Have you considered Mayo or Cleveland Clinics? I’ve had a couple of friends who have gotten answers at one of those place.
I am in Canada.
As I said, my current Doctor is being far more active in trying things. Results of a bone scan are pending.
I contacted clinics that do MRI for dollars. But an MRI of the heart is beyond them. Not sure why. Does the heart have to be slowed?
So it seems private clinics in Canada won’t help. Although I am extremely grateful and happy with the care and services I have had in Canadian healthcare. Two very major surgeries, with excellent results. There are some faults in the system. Mostly financial at heart. But the care I have received is great.
Have you had an endoscopy?
Crohn’s is a mouth to anus (and outside the GI tract, “extra intestinal”, too) inflammatory disease. My speculation of esophageal was made without knowledge that you have it. Esophageal Crohn’s can cause the dissections, and inflammation, that I was wondering about (even small fistulae and abscesses).
You seem very anchored on pericarditis but it seems like it is more in the group of what they know it is not by now. That said pericarditis can be an extraintestinal manifestation of Crohn’s but looking it up usually a medication reaction (5-aminosalicylic acid derivatives such as sulfasalazine, mesalamine, and balsalazide, you on any of them?)
I did read some articles on esophagus issues. I forgot to bring that up with my Doctor. I will next appointment.
Would such issues relate to the posture? Standing, sitting, lying down?
I am not on any medications now. Since my initial Crohn’s diagnosis I have not had much medication. As I was doing quite well compared to most folks. On initial diagnosis, at 23? I got high dose Prednisone. Snapped me back quick, and a bit harshly. But did very well for a long time after. Got Colectomy at 30. Bowel was in bad shape. Possibly pre cancerous?
As I just got the ileostomy a year ago. My guts were well inspected. Looked good.
But I will bring up the Esophagus possibility. Thank you for reminding me.
I warned my doctors that I am a DIY guy and would be bringing up stuff. The Cardiologist did not like that. But my current one is quite fine with it. He really takes time to ask questions and then ask more questions depending on what I tell him. He also explains things very well.
Ask about hiatal hernia while you are at it. Although they aren’t usually that symptomatic if aggravated by the physical nature of your work it is worth asking about. A lot of the tasks you describe increase intrabdominal pressure which can exacerbate hiatal hernias.
Save your money re: private pay MRIs. If it was cardiac related the cardiologists would have jumped on it already.
Hernia in the Esophagus.
I mentioned that this issue became chronic after a bad case of some flu thing. It was frightening. I could not stop coughing. Nothing being expelled. I would cough, till there was no air left to expel. Gasp in and begin coughing again. I was really scared. On the very edge of going to emergency or even calling for an ambulance.
I did tell this to all the Doctors involved. They have not looked into the Esophagus yet.
I am not fastened on Pericarditis. My symptoms don’t match up that well in their entirety. Many do. But many are opposite or absent. I am pretty fastened on it being some issue due to inflammation.
Just mentioned that. But forgot the specific terminology.
Thanks.
I took a peek at that issue.
I have two of the symptoms.
Thanks. I will bring it up with the Doctor.
Don’t ask me how I knew to suggest that.
The patient education sites at the Mayo Clinic, the Cleveland Clinic and John’s Hopkins have solid information, well presented
Potentially. Imagining a small fistula with a sterile abscess adhering to surrounding tissues pulling while different positions.
Take this for what it’s worth though. Not an internist. But a discussion with a GI doc might be worthwhile. If to just to verify that I imagine too much.
Nothing really useful to add, but I commiserate. I had issues with chest pains that sent me to the ER multiple times, which they now think were due to esophageal spasms. All that stuff in that area can feel similar. The body isn’t that good at distinguishing internal organ pain versus external pain.