Chest/heart pain associated with lupus?

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New Member

Date Joined Feb 2014
Total Posts : 3
   Posted 2/1/2014 7:34 PM (GMT -6)   
Long time lurker, now to be fair I've not officially been diagnosed with lupus, the shortest version of that nightmare story is I've had several doctors say yes and the most recent rheumatologist say no. Either way everyone agree's something is going on. Now my most recent blood culture came back positive for bacteria which I'm being told is responsible for my constant fevers (although its my understanding that is typical with lupus AND there is an issue of a possible contaminate) my real question is about this most recent symptom - My heart actually hurts. I get anywhere from sharp to dull aches on the left side of my chest, occasionally down that arm. It's usually followed by shortness of breath and palpitations. Sometimes its just a weight on my chest. A chest x ray a month ago came back clear.

I was told by one of the many doctors I saw that its just a symptom of the lupus, but in the same day was told I didn't have lupus by another doctor(I was hospitalized for the bacterial infection so I saw like five docs in one day, but one set of cultures came back clear another dirty - got discharged with no treatment since they couldn't decide who screwed up, so now I wait to do it all again with a third party - I digress!) Of course I'm waiting for a new visit with another rhuemy, but in the meantime its terrifying. Does any one else experience this? I've booked my appt with the cardiologist for this week but I guess I thought if I came out and asked maybe someone would say they went through this and its part of this disease and I could ease my mind a little, instead of just thinking its an infection in my heart. I'm not even sure what I'm asking....I think I'm just crying into my pretzels on the internet. But that's what it's for I guess..

And for anyone curious my ANA at the moment is 1:80, my pattern was homogeneous and is now homogeneous/speckled. My vitamin D is 15.9, my C3 is 92 (90-180) C4 is 24 (10-40), CO2, sodium, HDL are all low. And other than being prone to kidney infections I kinda meet all of the symptoms on the lupus checklist...I've been approaching this kinda like if it walks like a big red rash on my face and it talks like a big red rash on my face...but doctor's like to argue with each other so I'll just keep waiting and praying for someone to help me. Thanks.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 2/1/2014 8:48 PM (GMT -6)   
(((((((((((Gentle hugs))))))))))))

Lupus can affect the heart, but if you're having heart issues a cardio doctor will be better at diagnosing than any of us.

I get pain in my bones of my chest sometimes and I've had my full arm hurt and throb. I don't know if this is from my fibro or my lupus.
I hope the heart doctor can give you the answers you need and want.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

New Member

Date Joined Feb 2014
Total Posts : 3
   Posted 2/1/2014 9:00 PM (GMT -6)   
Thank you, yeah I'm hoping the cardiologist just says its only from the fibro (confirmed diagnosis) and not something like pericarditis from the lupus (if this is even lupus). I do feel a little better knowing it could just be the fibro, lesser of two evils. thank you again.

Beating Lupus
New Member

Date Joined Feb 2014
Total Posts : 12
   Posted 2/7/2014 9:00 PM (GMT -6)   
The heart or chest pain you feel can be pericarditis, which is inflammation of the pericardium or sack around the heart. You can also have pleuritis, which is similar. It is an inflammation of the pleural sack around the lungs. With lupus, there can be a build up of white blood cells within these linings between the lining and the heart or lungs, and it creates a rubbing effect. This rubbing is very painful. I know because it happened to me, first pericarditis, then pleuritis (multiple times). To diagnose pericarditis you need an echocardiogram, or sonogram of the heart. A regular chest Xray will not show this. Your doctor also needs to do a C-Reactive protein, an ESR, or Erythrocyte Sedimentation Rate. The treatment is prednisone (steroids). It decreases the inflammation. If you are waiting for your appointment with your rheumatologist, go back to your PCP and see if they will order any further tests.
When I first had pericarditis, it was scary. It was very painful, I went to the ER. At the time I suspected Lupus and had been tested, and only some of the tests were positive, not all of them, so the doctors were not ready to label me as lupus just yet. Even with pericarditis! But just like you, they did acknowledge that at least something was going on. It was a full 2 years after that episode before my third rheumatologist finally officially diagnosed me as lupus. It was a very long and frustrating road.
Just hang in there and be persistent! If you know something is not right, then keep going to the doctor, and get tested. Not every lupus test is going to show up every time. Keep track of your symptoms and when they occurred.
Are you taking any supplements or vitamins?

<profession removed, not relevant to this forum> Lupus fighter!

Post Edited By Moderator (Lynnwood) : 2/7/2014 9:38:52 PM (GMT-7)

New Member

Date Joined Feb 2014
Total Posts : 3
   Posted 2/8/2014 12:29 AM (GMT -6)   
Thank you for your reply BL, very painful and scary is putting it mildly! (but you know that) I found a cardiologist who turned out to be well read when it comes to SLE and was very kind when listening to my tale of woe regarding getting a proper diagnosis. He hasn't ruled out the pericarditis (despite saying he didn't hear the tell tale rub) or pleuritis or possible valve infection (cultures come back next week) but he did say that it may be something as simple as upping the dosage of my mobic and painkillers, seeing as I have been diagnosed with fibro. He went through all of my blood work and pointed out the results that I should be sure to show the next doctor (my anti-cardiolipin's and beta2's all are positive, though considered low for the lab I used, but he feels a positive is a positive) He also made sure to write in my chart that he was positive it's complications of SLE in the hopes that my next rheumy starts me on immune suppressors/steroids before my numbers start to undoubtedly climb. It's been two years since this all started with the longest cold I can ever remember having and some random joint pain and has snowballed out of control. Thank you for your words of encouragement! I am definitely going to be the thorn in the next dismissive doctor's side, because this uncertain agony has pushed me past my limit. I have a notebook I carry with me to track my temperatures, what medication combinations help, what doesn't, any new symptom that pops up, the works. As far as supplements go I do take biotin for the hair loss, and vitamin D since mine is so low, occasionally I'll take something in the B range but I have to tread lightly when it comes to the vitamins, etc being as I have a damaged kidney from an infection that almost got me six years ago. I've also noticed that with some vitamins, the chest pain feels worse? Maybe it's in my head but I have noticed that if I take one too many supplements, I get tachycardia symptoms. Thank you again for your response and I'll keep fighting as long as you do!

Beating Lupus
New Member

Date Joined Feb 2014
Total Posts : 12
   Posted 2/11/2014 10:24 PM (GMT -6)   
Aww glad to help :). I wish I had a forum like this when I was first going through the early stages, i felt so lost. no one acknowledged anything was wrong in the beginning, and yet I felt so awful and felt miserable, and had so much pain. That is why I am here, to offer words of encouragement and advice on how to get through things and manage symptoms, because I have figured a lot of things out on my own and through a lot of reading!
I was going to ask you about your kidney function, if it is good than you could take some NSAIDS (Ibuprofen or Naproxen), but if you say your kidneys are not that great, than you want to stay away from them.
As far as supplements go, I take Vitamin C, E, A, D, Calcium, Omega Fatty acids (mostly 3's or fish oil), a B-100 complex, (those are all recommended by my rheum) an herbal supplement called Zyflammend (naturally anti-inflammatory, you can research it). Co-enzyme CQ10. And I take a supplement with IgY or Immunoglobulin (Vector 450 brand), which helps your immune system function better, but does not stimulate it, so you won't flare. It helps relieve inflammation, helps with energy. I have actually been able to wean off my 3 lupus meds because of it!
My rheum also recommended DHEA supplement daily, Green tea (you may want to do decaf if you are prone to tachycardia), Mediterranean diet, no red meat. Lots of fish.
I am not sure what supplement would cause the pain to be worse, unless it has Echinecea in it?
For the Fibromyalgia, I try to do regular massages, baths soaking in Epson Salts and I add Eucalyptus oil and Lavender oil. (helps with muscle pain). But don't make water too hot, that can make inflammation worse!
I also do yoga and exercise regularly. Very important!
Maybe you can try some basic vitamins and supplements and tweak your diet (or do a detox if you know how! but done with food only, not taking any herbal stuff), and do some of these things while you work you way through the system.
I also went gluten/lactose free, another thing that nutritionists/holistic practitioners recommend for lupus patients.
OK I know this is probably way too much info! But hopefully some of it will help you. Ask any questions about anything if you like!
hope you feel better and hang in there! Find doctors that take you seriously.
Sounds like the cardiologist was a good start at least!

Feel better,
Lupus conqueror, Fibromyalgia, Hypothyroid, Asthma, IBS...I got your number :)
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