Hello Everyone, Well I have a question to ask about Lupus affecting rhythm of the heart. I was diagnosed with sinus node dysfunction in 1998. I was in good shape, working out at the gym at work, only 21 yrs. old and one day during a fitness eval. my arrythmia was discovered, while on the treadmill. The scary part was that I wasn’t aware of it. I was told to stop immediatley and was sent to a cardiologist for testing. Long story short, an EP Study later along w/ a holter monitor, I was diagnosed with sinus arryhtmia. I was told that I had a healthy heart but my electrical part of it was abnormal. Wow, that made me feel so much better, lol! Anyway it all occured right after I started to feel sick, so is it all related? Any ideas or comments will be greatly appreciated! Thanks… Wishing you all Well! Suzie :0)
Hey I replied to this but it went under my discussion “migraine” I’m on my phone and didn’t notice sorry…check it out there
Hi Rachel, I am glad to have brought up a topic that you too understand. It causes so many different issues, that aren’t brought up by doctors. Actually alot of things aren’t truly known about what these diseases do cause. So much more needs to be discovered, but in the mean time, we SUFFER! And it is so unfair! Happy to become friends with you. We all have so much in common unfortunatley! lol. Feel Well, TTYS. Suzie :0)
Rachel Simpkins said:
when I was younger I was told I had Mitral Valve Prolapse, but recently they said I did not. I find my heart out
of beat very very often. I just kind of ignore it. I try to drink more fluids . its a good point you brought up
because I was wondering if anyone else has that problem. Thanks Rachel
Thanks Rachel - I will go buy them tomm., I just told my husband about it. Worth a shot, right! Whatever helps! Are you on Methotrexate? I thought that must be when you say “chemo”, I was on that too. What did your mom pass away from, if you don’t mind me asking? i was just wondering if Autoimmune was heriditary in your fam. too? Whatever the case, losing your mom is the hardest thing ever! There truly is not a day that goes by without a thought of her and missing her! She was my world, and losing her when i was 14 y.o. to lupus was so hard! She suffered like I couldn’t even begin to explain to you at the end. It was the hardest thing to watch…It haunts me to this day! Thanks for the info. & i am so happy to have found a friend in you! Love, Suzie :0) xoxoxo
hello Suzie!!
Since lupus attacks every organ of the body at different times, it stands to reason that the heart can absolutely be attacked by lupus and have irregularities and damage. I have the wierdest ECG. I had it even before the heart damage came. The points on the ECG are supposed to point up with each heart beat, but with me, every so often the point goes down, below the middle line. It's called a T wave inversion. I now have ischemic cardiomyopathy, due to lupus damage.
You mentioned that your mother had lupus. When I was pregnant, I was told that my babies would either have a heart condition or would be premature. First baby found out she had a heart condition when she was about 21, like you. The second was 2 months premature. So this could be from your mother's lupus.
So yes, lupus will affect your heart. Many lupus patients have pacemakers and internal defibrillators. My heart has stopped so many times it's almost a joke now, but I always get resuscitated, and I'm still here for some reason.
Blessings, Sheila
Thanks for replying Sheila, It does make sense that the heart arrythmia would be related. I can’t believe all of the heart disease you have gotten from Lupus. There is so much that it causes that we have no clue about. I swear the doctors don’t give us half of the knowledge and info. regarding these Autoimmune disease. Very scary if you ask me. So much more need to be done, we are beginnig to have a type of epidemic. Very very sad! Be Well, Suzie ;0)
Sheila Wall said:
hello Suzie!!
Since lupus attacks every organ of the body at different times, it stands to reason that the heart can absolutely be attacked by lupus and have irregularities and damage. I have the wierdest ECG. I had it even before the heart damage came. The points on the ECG are supposed to point up with each heart beat, but with me, every so often the point goes down, below the middle line. It's called a T wave inversion. I now have ischemic cardiomyopathy, due to lupus damage.
You mentioned that your mother had lupus. When I was pregnant, I was told that my babies would either have a heart condition or would be premature. First baby found out she had a heart condition when she was about 21, like you. The second was 2 months premature. So this could be from your mother's lupus.
So yes, lupus will affect your heart. Many lupus patients have pacemakers and internal defibrillators. My heart has stopped so many times it's almost a joke now, but I always get resuscitated, and I'm still here for some reason.
Blessings, Sheila
Suzie, thanks for your kind reply to my message.
Well Sadly, doctors just know the very basics of the most common diseases. You would have to see a specialist who has taken a keen interest in lupus to learn more from a Dr. Most of the time, I am teaching my Dr. about my conditions from research I do myself. They don't have the desire to do much research unless the Dr. is a family member that loves you very much. For example if the doctor's wife or daughter had lupus, he would be studying all he could find on the subject, but they just don't have the time, energy or desire to study deeply into every disease of every person that comes into their office. I'm so grateful to live in the age of internet if I must have l upus and be close to home all the time. It's my connection with worldwide friends, and the world's knowledge, right at my fingertips.
Lupus is almost impossible to study, because lupus is different from patient to patient, and even in one patient, from week to week, and most of us are highly sensitive to chemicals and prescriptions, so we frustrate doctors immensely.
I have a book by a Dr. called "How Doctors think". It's quite interesting. It says that doctors (males mostly) have this ego, wanting to cure people. When they see someone with a chronic illness, they almost dread seeing us come, because it is a blow to their ego, a reminder that they can't cure us. So we are often not treated as well as people with an acute illness. I know that I have been sent from one Dr. to another so many times I lost count, because the Dr. thought I was too complicated. One said he couldn't handle more than symptoms at a time and in the middle of the emergency room, when I had an IV in each arm, he told the nurse, 'Pull the IVs out, send her hone, I am no longer her Dr. I can't handle more than 3 symptoms!" Welll he'd better find another job then, because EVERY illness has more than 3 symptoms. The nurse said "I will not!" and she went and found another Dr. to care for me, because I needed the 2 IVs to save my life. I have been sent home "to die" by a couple of idiots who said out loud that they didn't want the death of a young woman on their record. After a while I got so tired of the abuse and neglect that I just went to natural medicine, they have a whole different philosophy of healing and many more remedies, less toxic than modern medicine. Now I only use doctors for my pain meds and emergencies.
Blessings, Sheila
Very Interesting, and so true! I have been to sooo many dr's. I was even taken by my father to the Hosp. for Special Surgery/Cornell in NYC. Paid out of pocket. I was young about 22ish & was told I def. had "some" form of collagen vascular disease? Hmmmm, that really narrowed it down, lol. Very sad to go through, very depressing, very aggravating, so many emotions to explain! But in the long run I sit here and get worse every day. I mean to be honest Sheila, I haven't had a "decent" "good" day in months. Stress, Hormones, comb. of both along w/ weather and who the heck knows what else has caused me to go in a downward spiral. I am really suffering, I can't do really anything w/o pain & extreme fatigue anymore?! I am so aggravated & sad, but I have to practice what I so often preach, "Stay Strong", I can't be hypocritical.
We need a big support group to initialize more research & knowledge. So many "famous" people/relatives of theirs, not just us "ordinary people" are suffering from lupus/related Autoimmune diseases, why hasn't more been done? I feel as though i have hit a concrete wall. I need to bust through it, but I haven't got the power, I am wiped out!
Thanks for your knowledge & Be well my friend! You are in my prayers & here I go again "Please stay strong" if you do, I will! lol. {{HUGS}} Suzie :0)
Sheila Wall said:
Suzie, thanks for your kind reply to my message.
Well Sadly, doctors just know the very basics of the most common diseases. You would have to see a specialist who has taken a keen interest in lupus to learn more from a Dr. Most of the time, I am teaching my Dr. about my conditions from research I do myself. They don't have the desire to do much research unless the Dr. is a family member that loves you very much. For example if the doctor's wife or daughter had lupus, he would be studying all he could find on the subject, but they just don't have the time, energy or desire to study deeply into every disease of every person that comes into their office. I'm so grateful to live in the age of internet if I must have l upus and be close to home all the time. It's my connection with worldwide friends, and the world's knowledge, right at my fingertips.
Lupus is almost impossible to study, because lupus is different from patient to patient, and even in one patient, from week to week, and most of us are highly sensitive to chemicals and prescriptions, so we frustrate doctors immensely.
I have a book by a Dr. called "How Doctors think". It's quite interesting. It says that doctors (males mostly) have this ego, wanting to cure people. When they see someone with a chronic illness, they almost dread seeing us come, because it is a blow to their ego, a reminder that they can't cure us. So we are often not treated as well as people with an acute illness. I know that I have been sent from one Dr. to another so many times I lost count, because the Dr. thought I was too complicated. One said he couldn't handle more than symptoms at a time and in the middle of the emergency room, when I had an IV in each arm, he told the nurse, 'Pull the IVs out, send her hone, I am no longer her Dr. I can't handle more than 3 symptoms!" Welll he'd better find another job then, because EVERY illness has more than 3 symptoms. The nurse said "I will not!" and she went and found another Dr. to care for me, because I needed the 2 IVs to save my life. I have been sent home "to die" by a couple of idiots who said out loud that they didn't want the death of a young woman on their record. After a while I got so tired of the abuse and neglect that I just went to natural medicine, they have a whole different philosophy of healing and many more remedies, less toxic than modern medicine. Now I only use doctors for my pain meds and emergencies.
Blessings, Sheila