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Hi all, My mom has lupus and has had it for almost 20 years now. She also can not go in the sun or she gets permanent redness and hardening of the skin. She has always had severe pain caused from joint "lock ups", just recently she is experiencing pain in her heart. When she gets it, it takes her breath away, and causes tremendous pain. She says it is heartburn. I know different! She takes about 6 tums and the pain goes away very quickly. I was wondering if anyone else has experieced this and what you do about it. My mom has never taken any medication. When she was first diagnosed she was prescribed all kinds of steroids and meds, most had side affects worse than her symptoms, so she refused to take anything. I was wondering what kind of meds or herbal vitamins etc that you take that reduces these symptoms. Also I have been reading alot about aspartame disease, and have been asking my mom to stop drinking diet pepsi to see if any of her symtoms go away. She is a chronic diet pepsi drinker. She will leave a can in her car and the next time she gets in she will drink it. I read that when aspartame gets warm that is when it is dangerous. They say aspartame disease causes many of the same symptons as lupus. In fact, many people were misdiagnosed only to find out it was aspartame disease and when they stopped drinking diet pop, all their symptoms went away. I was just wondering your thoughts on this? Do you guys drink diet soda? Hope to hear from you guys soon. Thanks, A concerned daughter! (Jennifer)

Hi - Just a quick reply as I should be in bed lol I won't comment on your mother's choice of not taking meds, as that is a personal decision that I don't agree with. As for the "heartburn" - there are 2 things that come to mind.  1 is an inflamation around the sack of the heart that is common in lupus, but I don't think tums helps that at all.  2 is atypical Gall Bladder disease symptoms.  I had a few years of chest pain off and on, and it's VERY atypical for Gall bladder problems, but I've never been one to do things "by the book" when it comes to my diseases. See if she experiences the pain most after eating fatty food.   Other than that, I'm at a loss. As for diet soda - I know of folks having problems with Aspartame and lupus, as well with hypoglycemia.  I drink diet soda, but have damaged joints from lupus.. so I think it's the lupus. lol  Never tried not drinking diet soda. Good luck and I apologize for being so disorganized in my thoughts.

Hello Jennifer,

It is great that you are concerned about your Mom and are willing to seek advice from others.

About a year ago I started experiencing severe chest pain.  At first I thought it was acid reflux attack or severe heartburn so I went to GI specialist who instructed me to increase my GERD medication. But I still continued getting chest pain so severe at times I would describe it as "crushing pain".  You know that saying about having a monkey on your back, well I felt like I had a monkey on my chest.  I finally scheduled a visit with my primary care physician for next day however hours befor my appt. I woke up and chest pain was so bad I could barely breathe from the pain.  I was rushed to ER to find out that I had a blood clot in my lungs also known as a pulmonary embolism.  I later found out that due to my autoimmune disease along with decreased physical activity it can place someone at risk for blood clots.

I encourage you to try to encourage your Mom to go to her doctor and explain her symptoms so she can get proper treatment if needed.

Best wishes to you and your Mom.