I am curious about triggers for Lupus, via genetic and environmental triggers. I read that Lupus is an over-active immune system disorder, I wonder how did the immune system become over-active, does it know or is it use to being ill? Can our immune system not spot illness due to our environmental factors. Here are some initial questions, I have been thinking about with my own history prior to developing Lupus.
1) I was rarely sick as a child into adulthood. When all my cousins would be ill with common colds, I could be around them because I never got their colds. My immune system would fight every cold and my sick time was reduced by 80% even on the common cold. If I was cut or hurt, my skin healed very quickly sometimes causing an simple infection, because the wound would heal or close quicker then normal.
2) My menstrual cycle since diagnosis, has been very heavy and clotty at times. Draining me of energy. Not sure if the two are related.
3) In my family ramped thyroid disease, sjoren's, sickle cell, Lupus, Rheumatoid Arthritis and other genetic disorders are present within the first degree relatives. (gee thanks!)
i had rheumatic fever and hypothyroidism ...and a lovey history of severe, long lasting trauma...
but fought off infections like a trouper in my young adulthood while all my kids were getting their share of childhood diseases. didn't get "sick " till the wolf huffed and puffed me up...now i get sick every time I turn around. hmmm. think I ought ta stop turnin?
I always had rough menstral cycles. Not sure if that is a factor here, though, but just making a note of it, because you said so.
Anyway, to the other points. I always had a very tough time being in the sun. In fact, as a baby, I distinctly remember my mom setting me out to get a "tan" in my buggy, and it upset me so much, because the sun was so blinding to me, that I still remember it to this day. I am 62 years old. I think at that time I was probably around 6 months, or so.
the only other family member who has an AI disease is my cousin, who has fibromyalgia. I haven't discovered anyone else with anything that even remotely sounds like AI. I just checked with my mother on this.
I never really showed many symptoms of the Lupus until my early 30's, which is when I began to have a lot of trouble sleeping thru the night. I also got a series of blood tests back then, because of being tired all the time, and the white cell count was way low.
I guess your idea of stopping this turning stuff is a good idea. LOL!
janice said:
wow---great information and presentation!
i had rheumatic fever and hypothyroidism ...and a lovey history of severe, long lasting trauma...
but fought off infections like a trouper in my young adulthood while all my kids were getting their share of childhood diseases. didn't get "sick " till the wolf huffed and puffed me up...now i get sick every time I turn around. hmmm. think I ought ta stop turnin?
Interesting thought. I died my hair every month from the time I was 18 years old. I often wondered if that was a trigger in getting Lupus. I read something about it being a possible trigger a few years ago, on some research site I was on. I only color my hair once or twice a year now. Too late to not do it at all. It doesn't seem to change anything; I still have Lupus.
Ann A. said:
My first lupus lesions were found in my ears. They were found just a few months after a cosmetologist was not careful when she permed and died my hair. One appointment she let the perm solution leak into my ear and sit there. The next appointment she let the hair dye solution get into my ear and sit there. When I when to the physician to complain about the lesions in my ears, I thought he would give me a lecture about using hair chemicals. Instead he took a biopsy and from there it was on. But I still sometimes think that getting my hair done was the real trigger.
I think my lupus was trigger in 1998, my mother passed unexpectedly, shortly after she was discharged from hospital after recovering from a thyroid storm , she had never been sick before and there were no symptoms. Her death cames as shock and i sunk into a deep depression. My family fell apart and then the fighting commensed as it always does when the glue that held the family togather is no longer there. It was a very stressful, painful time and i no longer had a support system. A couple years later my fatigue started but there was no other symptoms until i develope pnemonia in 2003, that was not responsing to treatment, it created the perfect storm for the wolf to attack, asia64
i have to say that humor is my best defense and i often laugh when i ought to cry...and most the time the humor is a good thing (i think) but when I was reading the responses i went from smiling (a little self-satisfied that my humor "took") and then I read aisa's, who also wrapped up a very sad post with a wee little light hearted finish...and it broke my heart. So I have to say that i am so sorry if I ever make light of something serious...or get too serious with something not so...i know how much this disease hurts us...and our families and loved ones...and i have the deepest respect for all of you.
ok. now i am in deep and i dont know how to get out; that new book i am reading talks about how to get out of quicksand: a person should try to lie in the sand, making with as much contact with the surface as possible---to sort of lie down and "be with it" then log roll out:
Sorry for your loss aisa64, your story sounds similar to mine, unfortunately... Stay strong.
aisa64 said:
I think my lupus was trigger in 1998, my mother passed unexpectedly, shortly after she was discharged from hospital after recovering from a thyroid storm , she had never been sick before and there were no symptoms. Her death cames as shock and i sunk into a deep depression. My family fell apart and then the fighting commensed as it always does when the glue that held the family togather is no longer there. It was a very stressful, painful time and i no longer had a support system. A couple years later my fatigue started but there was no other symptoms until i develope pnemonia in 2003, that was not responsing to treatment, it created the perfect storm for the wolf to attack, asia64
RJQ, I too remember having problems as a child in the sun. My relatives were from the south, and when I visit Macon, GA, the hot 90 something degrees would be too much for me, and I would immediately go inside or don't go outside until after 2 pm. This was at 7 years old. I also remember, my grandmother did not force me to go outside ever, she would tell me to stay inside at all times and made it very comfortable for me.
I wonder, if she knew I might have had traits of Lupus. She has since died can't ask her, but I am forever grateful for her understanding.
RJQ said:
I always had rough menstral cycles. Not sure if that is a factor here, though, but just making a note of it, because you said so.
Anyway, to the other points. I always had a very tough time being in the sun. In fact, as a baby, I distinctly remember my mom setting me out to get a "tan" in my buggy, and it upset me so much, because the sun was so blinding to me, that I still remember it to this day. I am 62 years old. I think at that time I was probably around 6 months, or so.
the only other family member who has an AI disease is my cousin, who has fibromyalgia. I haven't discovered anyone else with anything that even remotely sounds like AI. I just checked with my mother on this.
I never really showed many symptoms of the Lupus until my early 30's, which is when I began to have a lot of trouble sleeping thru the night. I also got a series of blood tests back then, because of being tired all the time, and the white cell count was way low.
Well for me this LUPUS stuff has made me REALLY be VERYYYYYY Thankful for my LIFe , and i give that to the most high Jeovah , GOD !!! ( for that ) -smile But to say that Environmental factors play apart odf this LUPUS situation , is really somewhat not TRUE in my case !!! I really neever even had a simple common cold - NEVER and always have been around people that had them , including having the flu !! But the monthly cycles leaves or put me on the same boat with you .... LOL Well for sometime i've experinced heavy / server bleeding along with ( wanting to kill ANYBODY ,when it's that time of the month ) , there noone in my family whom can RELATE to this , eventhough some knowns someone with it , but for the most part am the First in the family that has it , (just my LUCK) , smile Hopefully oneday they will find a cure and the younger generation won't have to go through so many changes , Living with LUPUS .... Beverly L.
Thanks Beverly for the message, even the praises to Jehovah, it reminds me of my grandmother, she was a devoted Jehovah's witness and some of my fondest memories are from her religion.
Stay Strong, just trying to find a common thread about this Lupus.
Beverly L. said:
Well for me this LUPUS stuff has made me REALLY be VERYYYYYY Thankful for my LIFe , and i give that to the most high Jeovah , GOD !!! ( for that ) -smile But to say that Environmental factors play apart odf this LUPUS situation , is really somewhat not TRUE in my case !!! I really neever even had a simple common cold - NEVER and always have been around people that had them , including having the flu !! But the monthly cycles leaves or put me on the same boat with you .... LOL Well for sometime i've experinced heavy / server bleeding along with ( wanting to kill ANYBODY ,when it's that time of the month ) , there noone in my family whom can RELATE to this , eventhough some knowns someone with it , but for the most part am the First in the family that has it , (just my LUCK) , smile Hopefully oneday they will find a cure and the younger generation won't have to go through so many changes , Living with LUPUS .... Beverly L.
Hay!!! , no problem there are moments where we all need to give each other lifting words from Jehovah !!! and i don't mind .... Beverly L.
Unshoreandscared said:
Thanks Beverly for the message, even the praises to Jehovah, it reminds me of my grandmother, she was a devoted Jehovah's witness and some of my fondest memories are from her religion.
Stay Strong, just trying to find a common thread about this Lupus.
Beverly L. said:
Well for me this LUPUS stuff has made me REALLY be VERYYYYYY Thankful for my LIFe , and i give that to the most high Jeovah , GOD !!! ( for that ) -smile But to say that Environmental factors play apart odf this LUPUS situation , is really somewhat not TRUE in my case !!! I really neever even had a simple common cold - NEVER and always have been around people that had them , including having the flu !! But the monthly cycles leaves or put me on the same boat with you .... LOL Well for sometime i've experinced heavy / server bleeding along with ( wanting to kill ANYBODY ,when it's that time of the month ) , there noone in my family whom can RELATE to this , eventhough some knowns someone with it , but for the most part am the First in the family that has it , (just my LUCK) , smile Hopefully oneday they will find a cure and the younger generation won't have to go through so many changes , Living with LUPUS .... Beverly L.
Interesting. My son's lesions are behind his ears. He had a fair bit of radiation exposure and a couple of surgeries to treat an AVM over the last two years, and I wonder if those interventions somehow jumpstarted the cutaneous lupus.
Ann A. said:
My first lupus lesions were found in my ears. They were found just a few months after a cosmetologist was not careful when she permed and died my hair. One appointment she let the perm solution leak into my ear and sit there. The next appointment she let the hair dye solution get into my ear and sit there. When I when to the physician to complain about the lesions in my ears, I thought he would give me a lecture about using hair chemicals. Instead he took a biopsy and from there it was on. But I still sometimes think that getting my hair done was the real trigger.
great responses.. i totally agree with everyone else and their feedback.
I am from san diego Ca... i had issues withjoint pain since i was around 5 or 6. But i was unable to really explain hat i was feeling. they tested me to arthritis- to have a nagtive test. they never considered lupus back in 82.
then in 2001 i was living in AZ and caught my first sinus infection ever. I didnt have health insurace..and was young and clueless..... i suffered for over a year. stripping vocal chords. etc.
and just horrible pain... to my ears. my throat and chest. One day i got a fever of like 104/ nobdy was home- so i suffered in pain. i slept straight for maybe 3 days . just drinkin water and back to sleep. on the 43rd day- went to Emergncy room only be told i needed a specialist. at that time my god sister had lupus - so i made appt with her doctor. I thought i had schleroderma - as i did much rsearch online the test we marked for lupus. I was dianosed immediately.
anyhow, the trigger for me was emotional distress. i was literally stressed out so badly- and i wasnt handling it well. my body handled it through the activation of my immune system. I believe it responded by going crazy and killing everything. insted of just the germs.
even as a baby i was sickly. as a child i caught all the germs imaginable. viruses. bronchitis was constant., phnuemonia.....severe hives... all over.
so the signs have always been there.just not clear for the doc to diagnose.
they kept telling my mother i ad growing pains... so my mo would rub my legs and bosy until i fell asleep.
See Dancer mom, the environmental factor criteria is what drives me crazy. I wonder, did I stress myself into an autoimmune, was I too passive in life (which I wasn't) or was I too aggressive in life what did I do to turn this switch on??
Reading this post, made almost exactly one year ago, I see some signs of an overactive immune system. When I noted, my cuts, scars and bruises would heal quicker than normal and I became better from colds quicker then my cousins. Those might be signs of an autoimmune. I also realize that my grandmother may have known I had the gene, because, growing up, I visited the south (Georgia) each summer and I would cry and throw tantrums not to go out in the sun. I would play and invent games to go indoors, even when forced to go outside, by my aunts, I started playing mostly in the shade and going to places where the sun was missing. Maybe, that was a symptom for lupus.
Ann A. said:
DancerMom
In my head it takes
1. A genetic predispositon - the genome
2. An environmental factor to switch the gene on - the epigenome (could be stress, nutrition, "environmental" pollution.
3. a trigger - radiation could very well be a trigger - the advice on radiation once dx is contradictory (yea that is the story of our lives)
Hi, I do know what you mean- to go outside as child was not my thing either-smile. LOL. My brothers, sister and my cousins ,and our playmates would always tease me. I didn’t care outside was not for me !!! Still to this day I don’t stay out for along period of time, but when the sun goes down I will go out then!! So to say , don’t worry about nothing just do what is go for YOU…Beverly L.
I am from SD, too. It's hard to pinpoint the time when our disease kicked in. I believe mine started when I got Mono when I was 12 y.o. 6 months on the couch barely able to move. Got better some after, but went through several surgeries to remove lymph nodes and skin grafts. I felt like I was getting better again, until a back injury which required 2 surgeries and 3 1/2 years of rehab. I think it takes a trauma to the body to jumpstart the virus. Mine let up for about 9 months in 2005, until I had to turn in someone close to the authorities for embezzling investor funds. Talk about stressful. It's been full burn ever since. Not to mention an ex-husband who refuses to get my younger son help even though he has a diagnosis of bi-polar disorder and schizophrenia. The last time my son was here, my ex called the police with a fals report that my husband "beat the sh>>" out of my son. To tell you the police never even spoke to my husband after seeing my son should say all there needs to be said about that, except that my ex then went to my atty where they live, told the same lie, she dropped my representation 10 days before the court date, and I was fighting just being released from the hospital. What kind of jerk goes after their ex while they are sick? Now I am in hiding from my son. He is 18 and I have a restraining order against him as my ex has convinced him that all I did was beat him and he has sworn to kill me.
Thankfully, I have an older son that is very aware of the truth, because he was old enough to remember the abuse I suffered at my ex's hands.
So, what should be a new start with a great husband, just won't stop. I really want to find some meditation exercises that I can do at home. But also am looking for a counselor on our plan that deals with chronic disease. There just is not anyone that specializes in Lupus that I have found in LV.
Sorry, that was a vent...and didn't mean it to be. Thought when I got away I would have a new start. I also had the tonsilitis and "growing pains" as a kid. I'm 5'5" so not like I was growing really tall. My "other" son suffered the same issues, but I will not be able to help him.
LIFEwithLupus said:
great responses.. i totally agree with everyone else and their feedback.
I am from san diego Ca... i had issues withjoint pain since i was around 5 or 6. But i was unable to really explain hat i was feeling. they tested me to arthritis- to have a nagtive test. they never considered lupus back in 82.
then in 2001 i was living in AZ and caught my first sinus infection ever. I didnt have health insurace..and was young and clueless..... i suffered for over a year. stripping vocal chords. etc.
and just horrible pain... to my ears. my throat and chest. One day i got a fever of like 104/ nobdy was home- so i suffered in pain. i slept straight for maybe 3 days . just drinkin water and back to sleep. on the 43rd day- went to Emergncy room only be told i needed a specialist. at that time my god sister had lupus - so i made appt with her doctor. I thought i had schleroderma - as i did much rsearch online the test we marked for lupus. I was dianosed immediately.
anyhow, the trigger for me was emotional distress. i was literally stressed out so badly- and i wasnt handling it well. my body handled it through the activation of my immune system. I believe it responded by going crazy and killing everything. insted of just the germs.
even as a baby i was sickly. as a child i caught all the germs imaginable. viruses. bronchitis was constant., phnuemonia.....severe hives... all over.
so the signs have always been there.just not clear for the doc to diagnose.
they kept telling my mother i ad growing pains... so my mo would rub my legs and bosy until i fell asleep.
Hello my friend! It is okay to vent here, that is why we are all here to listen understand, and support when others won’t /don’t !! Smile just remember it all will be okay, relax and rest as much as possible -don’t cause a Flare for yourself. Yes this sounds like there are things they you must take care of - but hay! Take your time at whatever has to be done! You are just one person and don’t have 12 arms.LOL just remember be yourself and Don’t STRESS…Beverly L.
I am getting bombarded with advice from friends about how to "make things turn out differently" -- paleo diet? gluten free? chinese medicine? green tea? For a son who doesn't want anything to change right now. It's a bit baffling. We need to adjust to the sun thing before making more adjustments.
