Chest Pain - Not Heart Related?

I have been to the ER several times for chest pain but it is not heart related. Does anyone else have extreme pain in the middle of your chest? The docs never have an answer but when it is extreme I have problems breathing. Oxygen helps even though my ox level shows above 90 ( I carry an oximeter with me). Someone mentioned the cartlidge could be swollen due to sarcoid or the bronchical tubes could be having spasms because of the lungs being swollen and pushing against them.

Any suggestions?

Thanks
Debbi

Report post

21 replies. Join the discussion

Hi Debbie,
You might have lymphodenopathy which is fluid in the chest cavity around where you are describing and it does give you shortness of breath. This is a place common to sarcoidosis patients. Often the lymph nodes in that part are swollen as well. I'm sorry there isn't much you can do for it. Sometimes they give ventolin to open the airways and the next is prednisone short term dose to get rid of the inflammation. A chest X-ray should show it or a ct scan. Perhaps ask your Dr for one.
Cheers delza

Report post

Yes, I have this, but have asthma and sarc in the lungs, and a heart condtion. What I have found is the sarc lymph nodes mimic heart problems, I have hypertrophic cardiomyopathy with mitro valve prolapse. This is just a enlarged heart and the valve doesn't shut all of the way. I passed every heart test there was and then asked for the heart cath, and then they found these thing out. I suspect the sarc is in or around the heart, Cardiologist thinks it isn't worth it to take a bioposy since the treatment would be the same for me 100 mg of toporoyl and 10m of norvasc for blood pressure. I tell you I have the crushing chest pain and even the numbness going down my arm. I live with it. Yet my ekg and stress test are near perfect?

Report post

I'm starting to beleive this could be lymph nodes really close between my heart and lungs. Blessings Mark

Report post

Hi Debbie,
Yes I had really bad pain in the center of my chest and under my right breast. I have sarc in my lungs so thats what was causing it. Now that I have been on Pres it has stopped. I hope you feel better soon.

Report post

I just got out of the hospital for the very same thing. I have pulmonary sarcoid and I also have a hyietal hernia (i know that is spelled wrong) lol. My heart checked out fine so they said it was caused more than likely by the sarcoid or the hernia which often causes unbelievable indigestion. They gave me morphine for the pain and increased my omeprazole for indigestion. I stayed until the pain was gone, but it has returned several times since. I guess I should get some pain meds from my dr. Good luck to you!

Report post

This happens to me occassionally and it's horribly scary. I've also had many tests on my heart and they are all ok. I'm praying, we'll see what happens.

Report post

I have been in the ER 3 times this year and have been diagnosed with pulmonary sarcoid. I live everyday with chest pain. Right now I'm not taking any meds due to the fact my doctor doesn't know anything about sarc. I have been trying to get an appt with a sarc specialist in Indy but I'm not worthy of her attention I guess...I'm still being analyzed.
Sorry...had a pitty party...anyway My chest pain is constant and the intensity of it changes from minute to minute, hour to hour and day to day, It even wakes me in the night.

Good Luck to You!!

Report post

I have the pain in my chest too, CO2003. I have been evaluated by a Cardiologist and an Electro Physiologist for heart involvement. When I told them of the pain they told me pain only comes from blockages. They did an EKG, an Echocardiagram, and Nuclear Stress test, and a Cardiac MRI....all tests showed my heart and all it's arteries to be "perfect". There are no blockages, no enlargements, no leaks, no nothing....they need to do a PET scan but my insurance refuses to pay for it so I can't get it. Cardiac Sarcoidosis can cause shooting pains in your chest. For no known reason I will simply get sharp pains in the center of my chest that will shoot across diagonally to the left shoulder and through to my back. I find that if I "push" on my chest a little, it seems to make it hurt less when I breathe in. When this pain hits I have to take VERY, VERY shallow breaths until it's gone. Unless I'm pushing on it that is. No one seems to feel this pain is of any significance so I simply keep on going and hope I don't drop dead when it hits me.

Report post

Have they checked your gallbladder. My husband suffered with chest pains for a REALLY long time and in April, they saw some stones blocking the neck of the gallbladder and they removed it. Since then the chest pain has stopped.

Report post

This is so new to me and i have been trying to find as much information as i can about sarcoid. i have been diagnosed two a month ago. I went to the ER with sharp chest pains which were not hart related then i did a biopsy. It has been difficult for me and my family sisnce this is all new to us. I have a lot of SOB, walking is not as easy as it used to be, i have dry skin, red itchy rash and my short term memory is in a state, i feel lost most of the time. i find that my taste buds has changed, i get thursty a lot and my face is changing. Im on arava, pulmison and bronchodilator spray but i still get chest pains almost every day. i have gone back to work but its hard for me to sit on my desk for the hole day without getting pains on my neck. The cold weather makes the chest pains worse for me.

Report post

I have no idea what causes them, but I have them, they can be extreme. I think I should have oxygen too, for when the breathing becomes very difficult, I might suggest that to the doctor.
I didn't have a lot of chest pain until after my lung biopsy. The doctor didn't say what might be causing it. I have normal oxygen levels too. However I still have trouble breathing. I am on symbicort and that helps some.
Angela

Report post

Yes same thing with me. Once you have this they all come back with it must be your sac.

Report post

Yes Polly, I seem to have the same problem. My primary care, neuro doc, knows little or nothing about sarcoid. I'm going to a pulmonary doc this week-we'll see what he actually knows. My rhuemy in Colorado knew more than these. Thank goodness right now it seems to be at minimal. I haven't had a flare up in close to 3 weeks now. Only on 5mg. of pred. and pain med., sleep aids., if I can get by with just that....I'll be everso happy. I'm thinking about slowly tapering off the 5mg. down to 21/2mg. and hopefully wean off.
Take care

Report post

I also have chest pains. Most of mine seems to be indigestion, believe it or not. Sometimes I feel as though I'm having the big one but if start drinking water it seems to push it back down and dissolves it.

Report post

I also get these chest pains. They are on the right side exactly where the Saroidosis afflicted my right lung lymph nodes. I did the stress test on the treadmil and survived. I happened to be walking 10-12 miles a day when I did this which really helped. Doc offered the CATH test but I refused. EKG and all that was perfect. I notice when the humidity is high or I am really tired it hurts the worse. Like many others I just deal with it and go on. Pain meds help when this occurs. I am on Prednisone for what seems like forever. I am still working and plan to continue to do so as long as I can. Sarcoidosis be danged!

Report post

I get chest pain with a flare up. This month I had a flare up (after 26 wonderfully quiet months) and I had the chest pain. 6 days of prednisone got rid of it.
A couple of years ago I had the fortune to meet Dr. Culver from the Cleveland Clinic at a Sarc Patient Conference and asked him why sarc patients get this chest pain. He just shook his head and said that is something they can't explain although many sarkies report it.

Report post

I have chest pains my doctor told me it was acid burn of the esophogus ( food pipe to the stomach). I have a really wide opening at the joining of my stomach and a narrow end at my mouth. when I sit at the computer, do any work in front of me, or sleep and slide down off my wedge and lay flat. I wake up with really unbearable pain under my ribs and at the bottom of my breast bone that goes through to my back. I have been having this for years. Gets worse with age. If it is acid burn. predisone will make it worse. That is why I have it take it leave it off. Just do the best you can. It is not the burning pain of heartburn it is real unbearable pain.

Report post

I was diagnosed in 2008 with sarc. I've been mostly on prednisone since then. I went off in February & I was having horrible chest pains & joint pain. In june I started a new med (not related) and got a rash on my leg. I thought it was from the medicine. I tried over the counter lotion, but didn't help. Yesterday I saw my pulmonary doctor. He gave me breathing treatment & put me back on prednisone, inhalers & the rash is for sure sarc! Here I go again! I'm beginning to wonder if I'll ever be free of prednisone & chest pains! I love our group on here! It sure helps ease some pain!

Report post

It can be from the lungs, or the lymph nodes BUT it can also be a heart attack. I have chest pain daily and have had a heart attack and there is a difference, but its slight. Better to be safe than sorry. I do have a checklist in my head though when it hits. How do I feel otherwise? Pain anywhere else? Am I lightheaded? Am I nauseated? Or feel faint. If I answer yes to these I go in.
You know going in to the ER with chest pain that was intense is how I found out I had sarc in the first place. But I also think its in my heart too. But my heart Dr said he didn't see it, yet "I have slight heart failure starting and a valve that is thickened. He I think it thinking it will show up as a blockage. Not if its in the muscle itself it won't.
But yeah chest pain is a daily thing. Its worse when I try to push it beyond gentle exercise.
You know there was one BIG difference with the heart attack versus all the other times I have been for one reason or another to the ER they had a tough time getting a vein that would hold up. Even when I almost bled out and had to have 5 units transfused it was easier to find it. HEEYYY It was right after that that I started to not feel right. I blamed it on my instant menopause but maybe it wasn't that. How many of us have had blood transfusions?

Report post

yes I have this it seeems my dr took some blood work because she said I should not be hurting taking 40mg of prednisone. so w e are waiting on the results. but I will tell her what you said here about it pains it s sometimes and it will knock you down, it goes like a spider web in t\middle of my chest area, feels really strange like you wish you could pop the air out, thank sfor you info and have a good day.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

Community leaders