What do you think causes lupus? just curious abou... - LUPUS UK

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What do you think causes lupus? just curious about your own personal view...

rougegirl profile image
16 Replies

I dream and wish for a cure soon...like all of us here...but have you ever looked back in your life and recall a time or moment before diagnosis that you think could have brought it on?

I am curious to see if there is a common link or your own views...

Me, personally I remember i fell asleep in the sun and got severe sunburned that could have altered the immune system as it had to fight hard to recover...

or/and also because it affects more women...i wonder if there is a link to childbirth epidural or medication that brings it on while your hormones are unbalanced, and last but not least and/or even chemicals of some sort in food/soil/water.

Looking forward to hear from you :)

16 Replies
lupydragon profile image
lupydragon

Hi Rougegirl,

I beleive my lupus was triggered by severe emotional stress from over a period of 5 years.

As follows My future son in law died from a tragic accident in which he drowned, my husband and I were effectivly kicked out of the business we were in with someone we thought was a friend (the reason being, they thought things were getting to stressfull, 6 weeks after our future son in law died, not surprising) my father in law was diagnosed with cancer and battled for 15 months before he sadly died, Our son was involved in a car accident where an old lady died as a result of waliking out in front of him, and he was charged with causing death by dangerous driving even though he was only doing 3 miles faster than the speed limit and was sent to prison for 2 1/2 years and served 15 months, so we spent 15 months visiting him in 3 different prisons.

Then a week before our son came out of prison, in mid conversation I just lost my voice, it wasn't sore or anything, I just couldn't talk ( much to releif of everyone !) The loss of voice went on for nearly 2 weeks, still with no soreness even though it sounded as if it was sore I did see the GP and they said it was a virus ! I then had a sore thoat for about 8 hours, then all seemed ok

About 3 days later my right ankle became very swollen / red / painfull, and could barly walk I thought I had twisted it or something but couldn't remember doing so, then a couple of days later my right shoulder just became very painfull with no movement, so went to A & E they perscibed anti inflamatories and pain killers, and advised if any thing else happened to go to thr GP, Well quite quickly various joints etc began to be effected, so back to the GPs and finally the consultant, with the diagnosis of Lupus

So I believe stress plus the virus were the cause of my Lupus

Danielle2419 profile image
Danielle2419

strange as it sounds i didnt take much vitamins or minerals before, it seemed to make me weak especially my joints and muscles i believe that could possibly have casused my lupus

shay1 profile image
shay1

Hey I know what activated my Lupus..

I was 19 and the doctors put me on pencilling for something trivial. (I had took pencilling before) But this occasion, I had an allergic reaction, it was horrible I blew up with all the symptoms of Lupus and have never been the same since, I believe this is what upset my immune system. It took me two years to get diagnosed which is quite quick really if you look at some other cases. its been nearly three years now sometimes I wish things were different and I was well enough to hold down a job..ect. On the other hand, I would not change it because I wouldn't be the strong and lovely person I have become :) xxx

rougegirl profile image
rougegirl

Thanks so much for sharing...first of all I am a big believer that severe stress/trauma can alter your immune system...I was very touched by you (lupydragon) my heart goes out to you...and yeah it does look like the cause for sure.

metoyou also i think nutrition plays a part big time...sometimes you can have allegies (like gluten etc...) so you are eating right but the body is not absorving the nutrients and because it goes undiagnosed...you never think about it...this happen to me.

shay1 i can see the link, pencilling is a very strong drug...i am glad you coping with work and doing as well as possible...attitude also can boost your immune system ;) and yes lovely too x

thanks so much... and keep your answers coming beloved ones...x

jemmyjemjem profile image
jemmyjemjem

Morning. I think I may have had it all my life. As a child I use to get horrific mouth ulcers, it started at about the age of 8. I would also get really bad tonsillitis and at 14 I had glandular fever. I was only diagnosed in Sept last year and since being on treatment I feel great. My symptoms started to get worse when I was pregnant with my middle son 5 years ago and I had a blood clot whilst preggers. The same son is currently being tested and looked at for having Lupus or another Auto Immune disease as he is the same as I am ... good luck xx

rosie1976 profile image
rosie1976

Hi I'm still in the process of trying to get a diagnosis but I think trauma and stress play a big part. I've always had discoid lupus from a young age which has mainly caused skin problems and I've always picked up colds and viruses really easily. I'm also prone to blood clots especially in my left leg and recurring cellulitis in the same leg :-( but in last year my symptoms started to appear following going through a lot of stress financially from going to uni and starting a new job which involves a lot of driving, my dad being admitted to an emi home with severe dementia and to top ot all off I was involved in a bad car accident which wrote my car off and injured my already bad leg :-( thats when the aches n pains n tiredness n breathing problems started the symptoms have eased slightly but are definitely made worse by stress so I think stress plays a big part of making flares worse along with nutrition as I have had a gastric bypass 5yrs ago a struggle to absorb certain nutrients and I always feel worse when I don't keep up with talking my vitamins n minerals

xx

gillw profile image
gillw

I think my Lupus started when I caught mumps from my then 3 year old son. He is now 47. As an adult I was really poorly with the mumps and all my problems started from then, miscarriages, mouth ulcers, aching joints, lethargy etc etc. I was diagnosed 10 years later in 1979 but only when it got to the life threatening stage. Hey, treatment has moved on a deal since then, and diagnosis if not easy, then easier given the right support of good medics. I'm just thankful I'm still around after 43 years of lupus! Let's all hope for that elusive cure.

I think I had lupus age 13 when a vertical line appear on my nose. I couldn't get rid of it and it's still there. I had no other symtoms until age 24 when I had a small patch on my scalp which grew into a bald patch. At the time I was experiencing some degree of stress which trigger lupus into action. I think we probably carry the lupus cell, gene or whatever it is in our bodies and it is dormant until some external factor can trigger it into action. I don't believe it just appears from nowhere - that's my theory anyways!

DaleDiva profile image
DaleDiva

For me the trigger has been stress, stress and then more stress!!! If you put my life for the last 15yrs in a soap opera there would be complaints that it was too far fetched :)

caninecrazy profile image
caninecrazy

hello,

i do believe my lupus was triggered by two stressfull things in my life; the tramatic birth of my son as he was a vontouse delivery and born blue,he was rushed out of the delivery room for what seemed like an age and simply brought back to me and laid in a crib wrapped in a blanket.i wasnt even told he was a boy. i looked at my hubby and said"is he our son?" he was born in a baby boom so midwives were rushed but that experience put an end to my wish of another child.

secoundly,my twin suddenely died in 2004 aged just 32 and i buried myself in work doing 50+ hours a week.3 months without a day off (management at the time didnt care for my welfare ),i dropped from size 18 to size 6 in a year and collapsed one evening at work in 2005, i was diagnosed with P.T.G then but i was already showing symtoms of lupus in 2006 after tests,bone marrow biopsy etc etc, only after having the classic lupus butterfly rash did they say it is lupus.

it took 15mths for me to regain my strength to work part time but ive never been the same. yes i am partly to blame as i couldnt cope with the loss of my twin,if i was busy then i didnt have time to think about what had happened.

now with hindsight, auto immune conditions run in our family as my twin had s.l.e and now my younger sis does too, my brother (her twin,my mum had two sets!) has had M.E. since 16yrs old.

this is an interesting question to have asked x

Geordie-chick profile image
Geordie-chick

I got my legs sunburnt on a really windy day at the beach I laughed about it at the time cause it was a freezing day. Then about 2 weeks after my wrists started hurting and it gradually got worse as the weeks went on.

deadasadodo profile image
deadasadodo

Hi

for me it was a miscarriage followed by the birth of my daughter 10 years ago, she was 5 weeks early and weighed 3lb 6oz, I think somewhere between the miscarrige and the birth my body kicked off and my immune system went into overdrive. So I am pinning it on hormones, also just befor my period every month I have a mini flare and an exhausted for a week. On saying all that I work full time, have a lovely 10 year old daughter who I love to bits and do my best to get as much out of life and enjoy the small things.

After the blood tests and the rheumatologist telling me about lupus plus the information pack i received i realised its always been there. As a child i got what i thought was growing pains, severe migraines, arthritis in my fingers (though no one believed me since i was in primary school), i was always cold, had corned beef skin, very rosy cheeks, and when i was a teenager i had recurrent miscarriage, recurrent kidney infections, lots of hospital trips. All makes sense now. But it all got worse after i had my son if I'm honest. Xx

joannebond360 profile image
joannebond360

Had symptoms gradually getting worse since the pregnancy of my son 7 years ago. Had two daughters before hand with no problems. All started at the beginning of my pregnancy but looking back had joint pain for years. Had my first major flare up after an infection 3 years ago.

Oshgosh profile image
Oshgosh

When. I was 26, I had 3 serious bouts of tonsillitis,resulting in me having my tonsils out. Since then Ihave had random symptoms- allergies- sensitivity- sinusitis - asthma. Etc

Gave up smoking 30 years ago.over the years,everthing has been treated on a symptom by symptom basis.

Lover the past 2 years,I became increasingly short of breath.

I was diagnosed with Non Specific interstitial pneumonia.

This year at the age of 67, I’ve been diagnosed with

Lupus.i asked the consultant if the lupus caused the lung disease,she said she doesn’t know,but it is a rare complication.

I’m fed up waiting to go on Myclophenate,

Short of breath ,pain in base of lungs and chest pain and the ever present fatigue.sorry to whinge.

Buckley123 profile image
Buckley123

Emotional stress over many many years and loosing my mother which broke my heart 💓

Or maybe this is when it escalated could have been after my last son was born he has missing fingers and all sorts of problems it was a massive shock xx

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