Has anyone else had cardiac involvement with SS? I ended up in ER this week with all kinds of arrhythmias. Thought initially I was having a heart attach. I am a retired RN so I don't mind you being "medical" in your discussion. Thanks .
Hi Snowflake,
Sorry to hear of this! I'm okay in the cardiac dept so far, other than Rheumatic Fever at age 5. When we talk about looking back through our lives looking for indications, or if discuss possible 'triggers', I wonder about this.. Considering it's a systemic disease, it can go anywhere, but as an RN, you certainly know this.
I suppose a Rheumatologist may be the best one to ask about this, considering that my last stress the Cardiologist asked me if Psoartic Arthritis, Sjogren's and Raynaud's were autoimmune diseases, I was not especially impressed with him! That said he just operates a machine all day, so that has to be a factor there, I guess!
I hope you can get some solid answers from an MD soon, and I hope it can be easily treated.
Wishing you well,
SK
Snowflake, unfortunately, I have been having horrible cardiac pain for a LONG time. It used to be more of a periodic issue. Now, that's how I live basically everyday. I'm sick of going to he emergency room for chest pain only to get sent home. No matter what I have medically wrong, it's always blamed on my fibro....followed by "Now we want money...or should I say MORE $$$$. The has Rheumies here in Chas. SC. have a very long way to go. My husband and I are trying to find somewhere to move as we speak. Somewhere a "specialist" really is a "specialist."
Snowflake, If you don't mind, I was wondering how it is effecting you?
hello snowflake
sorry to hear about your chest pain I am a snowbird and was admitted with chest pain so bad I thought this is it crussing it tuned out it was a inflamation in the chest nothing wrong with my heart after 24 hrs I was back home with high blood pressure med blood pressure always normal been a month ago so far so good one day at a time with this sjorgrens wisch you well
Have they ruled out pericarditis, inflammation of the pericardium?
Three years ago, I developed a pericardial effusion. They drained a liter if blood from around my heart. Three days later, it started to re accumulate and I was on tamponade. I was transferred to a hospital with a cardiothoractic surgeon. They removed part of my pericardium. The pericardium was biopsied and showed chronic and accute inflammation. I suspect that o am continuing to leak blood due to inflamAtion, however instead of accumulating, it drips into the abdomen and is absorbed
hi Snowflake,
What did they do for the the diagnosis of “all kinds of arrhythmia” ? I think it’s unusual to have multiple types of irregular cardiac events in one episode. I hope they gave you some kind of med to alleviate the symptoms until seen by a cardio for a full work up? As you know some arrhythmias can be life threatening, such as A- fib. I would advise seeking out a reputable cardiologist to evaluate you as well as review the records from your ER admission. Wishing you the best and hang in there!
I never had cardiac issues prior to this. I developed tachycardia. My resting heart rate was 95-99. I later developed painful palpitations. My husband was able to tell when I had a palpitation by watching my chest jump. I felt as if someone was inside and punching me. I am taking verapamil which has helped dramatically with the symptoms. I did fly to Cleveland Clinic as they have a pericarditis clinic. My heart is not damaged from this but there was still evidence of continued mild inflamation 6 months later. I am followed by a local cardiologist twice a year. So far my echos have not shown any damage to the heart muscle, but just a slight amount of fluid which hopefully will continue to drain through the pericardial window as long as it doesn’t scar over or stiffen. The biopsy also showed some eosinophils in the pericardial tissue which no doctor can explain
I don't mind sharing at all. I was having a lot of palpations. I have a prolapsed mitral valve and have mind palpations frequently but this was way beyond that. Then I broke out in a sweat and had chest pressure and shortness of breath. That was enough symptoms for me to seek medical help. I wore a holter monitor for 24 hrs and it showed that not only was I having PVC's but also PAC's. I follow up with my family doctor on Tuesday. I hope I get a cardiologist referral and they do a complete work-up.
I am basically doing very little now as the symptoms continue and markedly increase with any activity. It is frustrating but I have to be patient right now. If symptoms get a lot worse I will, of course, call 911. Thanks everyone for your concern. I really means a lot to have your support. Your prayers would be appreciated.
I never had cardiac issues prior to this. I developed tachycardia. My resting heart rate was 95-99. I later developed painful palpitations. My husband was able to tell when I had a palpitation by watching my chest jump. I felt as if someone was inside and punching me. I am taking verapamil which has helped dramatically with the symptoms. I did fly to Cleveland Clinic as they have a pericarditis clinic. My heart is not damaged from this but there was still evidence of continued mild inflamation 6 months later. I am followed by a local cardiologist twice a year. So far my echos have not shown any damage to the heart muscle, but just a slight amount of fluid which hopefully will continue to drain through the pericardial window as long as it doesn't scar over or stiffen. The biopsy also showed some eosinophils in the pericardial tissue which no doctor can explain
The pericarditis I believe is a real possibility. I am finding you have to be your own advocate with this disease and do your research. I will do that before going into the doctor on Tuesday. Thanks again everyone for you support. Again, prayers would be appreciated.
I have minor to moderate chest pressure/pain about everyday. I have pretty high bp and am having a very hard time trying to find a med that I can tolerate and lower my bp as well. I recently had all the tests (i.e. stress with dye etc.) done including a radial cardiac cath. All they showed was a very minor amount of plaque. So minor that not even meds were prescribed as my cholestorol and fats are not a problem. I can only assume it is the Sjogren's/Lupus that is the cause of this chest pain/pressure as well as the rest of the problems associated with this disease.
Sorry to hear that your problems are daily. Hope you can find some help and relief. Prayers for you.
tymmesone said:
I have minor to moderate chest pressure/pain about everyday. I have pretty high bp and am having a very hard time trying to find a med that I can tolerate and lower my bp as well. I recently had all the tests (i.e. stress with dye etc.) done including a radial cardiac cath. All they showed was a very minor amount of plaque. So minor that not even meds were prescribed as my cholestorol and fats are not a problem. I can only assume it is the Sjogren's/Lupus that is the cause of this chest pain/pressure as well as the rest of the problems associated with this disease.
I have arrhythmias of the heart and have done for years,, I also have on going inflammation of the chest and and seems to be on going, it seems to be part of SS I have had SS for over 21 years now
I have been having shortness of breath and palptations and numbness /pain in the ends of my fingers but didnt relate it to SS. I think i will call my doc to check into this. Thank you for bringing this to my attention.
SS has already effected my eyes.
Sadie
sadie said:
Sorry to hear about your eyes. If you don't mind sharing, how has it affected them?
I have been having shortness of breath and palptations and numbness /pain in the ends of my fingers but didnt relate it to SS. I think i will call my doc to check into this. Thank you for bringing this to my attention.
SS has already effected my eyes.
Sadie
Could it be costochondritis (Tietze syndrome)? Costochondritis isn’t the inflammation of your cartilage in rib cage and chest wall. Tietze Syndrome is Costochonritis with an added “bonus” (oh yeah…) of the cartilage becomes swollen. Both are rare. In both the whole area is very tender to touch. A couple of years ago, I thought that I was having a heart attack but after all their tests were done they diagnosed me with Costochondritis. However they never checked to compare the two sides of my rib cage, they didn’t notice the large lump on my right side. So I’ve diagnosed myself with Tietze Syndrome. I don’t post much, but I do try to read. I wish you all the best of luck.
Costochondritis IS the inflammation of your cartilage. Sorry missed that in my reread.
I'm glad you brought that up because I was wondering if it's related, too. I developed tachycardia at the same time all this stuff was coming to a big head. No one has yet done an EKG or anything on me so I don't know about arrhythmias but I wouldn't doubt that I have some of that by the way I feel sometimes.
Funny I have Afib also but no one seems to think its related to SS (and my team of docs work pretty well together). I have dealt with Costochondritis since my early 20s and That I hear can be related. It amazing how painful that can be. I was brought into the ER with suspected heart issue too. This whole conversation thread is fascinating to me. I really think there are tons of symptoms/issues that happen long before we hit the point of a doc seeing the usual signs of SS
Funny, I also went to the ER in December thinking it was a heart attack. The doctor told me I’m fine, probably a seizure ( I’m sure it wasn’t, my husband witnessed it and I kn my body). Primary put me through all the heart and lung tests, turned up healthy. I get random pain that travels to different parts of the body, and on that day… Left arm.
There are so many random symptoms, I felt like I was losing my mind. Thanks for sharing your stories, it really helps.
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My heart been racing lately went to Cardio Dr and found PVCs. is anyone experiencing.