17yo Sjogrens chest pain & palpitations - pericarditis??

[hannahsutton]

Hey everyone, I'm new here. I'm 17, I have Sjogrens, fibromyalgia, an idiopathic pancreatic exocrine insufficiency with postprandial hypoglycaemia and chronic migraines (I think that's it!) anxiety and depression are a given

Lately I've been having a funny heart beat where I feel extra beats (sometimes it feels like even 4 in quick succession). This was all it was until I was at school and sitting down my pulse went up to around 100, my chest went tight and painful, I went clammy and school called am ambulance. They ruled out heart attack, blood clot and hole in my lung and with a normal  ecg sent me home.

However it's been getting worse, is worse at night when I lie down, is worse when I bend over and breathe in and possibly when I eat (makes me out of breath). Stairs are a horror. I'm not overweight but I'm not fit but I'm never usually out of breath or in pain on stairs etc.

Could this be an inflammation thing? I seem to go through bouts of my immune system attacking organs (eg had severe kidney pain with no known cause, came on suddenly, went away suddenly - has happened with other organs too. All tests clear so it seems there is just low grade inflammation). Anyone had anything similar or is peri/myocarditis related to Sjogrens? Or any idea what it might be?

Thanks so much xx

[Liz D.]

I recently have not been feeling well and out of breath upon climbing stairs, etc.  My heart would beat so fast I felt like it was coming out of my chest.  Although had no pain.  Finally after several months and tests and an ER visit, it was determined that I was severely iron deficient and had anemia.  I've only been treated for it the last month but I can feel myself improving.

I sure hope you can get some answers and feel better.  Please check your iron levels.

Liz D.

[Nymph]

Hannah, sorry that you are going through all of this at 17. It sounds like you could possibly have dysautonomia, which is a problem with your autonomic nervous system that controls the automatic functions of your body. One type is POTS. I have POTS and have experienced symptoms similar to yours. It is not uncommon with Sjogren's.

Here are a couple of resources:

http://www.dysautonomiainternational.org

http://www.dinet.org

I would be happy to talk to you more about it.

[hannahsutton]

Thanks so much both of you. I will definitely get my iron checked Liz, it has been really low in the  past as has my mums so I will get on to that.

I'd definitely be interested to learn more about dysautonomia Nymph, I've heard of POTS before but never really knew what it was. I guess all these things go hand in hand!

[irish]

Yes, the anemia thing is very real and can be so hard on us and sort of sneaky. I have been anemic for years and sort of up and down and then having all sorts of issues. I thought I was having a heart attack about 4 times. Did the cardiologist thing and changed a lot of other things. I also had the weakness, paleness off and on, terrible fatigue and shortness of breath. Also had loads of pain in back and long muscles in the legs and arms plus even my feet. My neurologist saw me again in such a state. She sat on the computer and reviewed everything. She said. You are seeing hematology and you will have IV iron. I did not think this was going to amount to a hill of beans. But---lo and behold after my 2nd and last infusion I started to improve and have had note energy than I have had in several years.

By the way, I also had lots of blurred vision, lost hair and had terrible pain in my scalp off and on for several months. Everything always seemed like it was related to my other 4 autoimmune diseases. Also, my thyroid got all screwed up too and when they increased my medication I could tell the difference. The thyroid and anemia are sort of related so make sure they check that also. Good luck and let us know how you come out. Irish