Does anyone think they know what brought lupus on... - LUPUS UK
Does anyone think they know what brought lupus on or roughly when it all started before diagnosis.
Hello Luupysue
Having given this a lot of thought over the years; I think of my crisis of health being caused by a glandular fever type infection which laid me low just before my 30th, I was super fit but did get a lot of colds.
Prior to this, I had suffered with tendon problems since my early teens - but didnt connect this to anything for a while. I can also see that my immune system was crashing through my 20's -as I had had chicken pox and german meascles. When it all went wrong, I became allergic to a lot of everyday things and couldnt work with some chemicals such as fertilisers or some paints.
I do wonder if a chemical such as phosphate was involved, but I also see a viral element and historical one.
I realise that this answer is less than helpful to you!
Hi LupySue, likewise I have given this some thought. I had always lived a full and active life both at work and doing activities. Dec 2010 got a virus, thought no more about it until all the aches/stiffness.arthritis occurred and ana positive blood test. I was doing a very demanding social work job, and home life was stressful as my daughter was going through a divorce and her and my grandson returned to live with us and contact arrangements etc had to be sorted out. I am also almost 50 (almost lol) so I think hormonal issues also played a part. We also have a holiday apartment in Cyprus so have always enjoyed holidays there. We are also a family who have a history of auto immune illness, eg: my grandparent had rheumatoid arthrites, daughter and grandmother has/had psiorosis, sister has thyroid difficulties.
For me then there were the following reasons:
1. Virus
2. Stress (without even being conscious of it at the time as I loved my job)
3. Hormones (beginning of menopause)
4. Sunshine
5. Auto immune conditions in the family.
For me I don't know if this is right but I see it as a mixture of part hereditary part environmental. These days I try not to revisit why I have UCTD/all the symptoms of lupus (suspected polyarterites and polyneuopathy). I am in a positive phase with how can I work with this illness and what can I do that is preventative. It's an interesting question LupySue and it will be good to see other responses. x
For me it was compounded work stress - worked really hard for 2 years before the first symptoms appearing (14 hour days as a norm, most weekends, no real holidays and tremendous pressure from a very demanding job). I thought I was handling it very well, everyone thought I'm amazing being able to keep so many things in the air and function so well. Hmm. I'm paying now - the genie won't go back in the bottle. Never entered my mind that my immune system might become impared as a result. I can kick myself now but too late.
Isnt hindsight a wonderful thing?
I think a lot of us can look back and see how out lives and lifestyles affected our health.
I can also include having 3 kids in 3 years to the mix plus the fact that my son was born with a 1 in 10 million heart condition, Micro surgery at 10 days old, -I aged a decade and lost a stone in one week. So stress, I think so.
I've thought a lot about this too, in the 15 years since I became ill. I guess I was searching for someone or something to blame, & it doesn't help when all you can do is think because your body won't let you do anything else. Like both of you I think it was multiple factors such as vaccines, stress, genetics, pollution or pesticides. But looking back the signs were always there, even in my 'healthy' days. So something or other was going to trigger it in the end.
It's good to hear you are in positive phase luupysue, me too. I read in the lupus news & views magazine about a lady who realized she needed to learn to dance in the rain, rather than waiting for the lupus storm to pass. So I try & hold that thought when things look black & it's really helped.
Best wishes. X
Mine definately came on with the menopause. I had none of the usual symptoms, such as hot flushes and so on. I thought, brilliant, and then i started to have aches and pains in my joints. Leading up to the menopause i had a few symptoms, such as fatigue. I put them down to my age. I sometimes wonder if there comes a point in life when we lose our immunity to a particular illness.
Melinda, I genuinely believe hormones played a part in mine as I too had been saying that I was sailing through the menopause as I have not had the usual hot flushes/mood swings etc that most people seem to go through. I remember saying that to my rheumy only last year. I have read that a lot of CTD/lupus can dissipate after the menopause so here's hoping.
im glad youve asked this question as my family beileve my twin had lupus develop after a very bad bout of glandular fever in her teens. sadly she died in 2004 and i couldnt cope without her and buried myself into work doing 70 hr weeks for almost a year, i had lost alot of weight until i collapsed in 2005 and have never been well since. i couldnt work at all for 15mths after, i was skin and bone. i think it was the shock of losing my twin as i had always been healthy before, had childhood illness' like chicken pox amd mumps but ok.
arthritus does run in my family though, now my younger sis has been diagonosed with lupus and my younger bruv (theyre twins! my mum had two sets!) has M.E since 16yrs old.
its interesting to read answers though.
perfectly healthy as a child,then at the age of 13 developed a breast disorder due to hormones which left me having a major operation to remove in total 3 stone of breast tissue,yes 3 stone!! then at 15 had yet another major op to remove 1 stone of breast tissue that had "grown" back,18 was rushed to hospital to have my daughter 2 mths premature due to pre-eclampsia after that day i never felt my normal and havnt to this day 13 years on,i began having serious panic attacks which led to a genalised anxeity disorder,chronic tiredness,and low white blood count and dizziness/feeling unbalanced,gp fobbed me off many times until one day a locum said she was referring me due to the low blood counts,thank god she did after many blood samples (during this time i fell ill over xmas and my knees were so painful i couldnt walk upstairs)i had a urine sample in the march-told i needed a kidney biopsy then 5 hrs after they said you have lupus and nephritis stage 4,talking now to the doctors at hospital they seem to think as a teenager it developed maybe from hormones maybe for the 2 majors ops a year apart,then it lay dormant until 18 and the pregnacy caused a flare which in turn caused pre-eclampcia,it stayed grumbling away at my blood then xmas 2010 had a bad flare which caused the joint pain and it attacked kidneys,so it looks like hormones for me,like they say il never know for sure xx
Definitely Sue. It began when I was pregnant, with the usual, regular blood tests showing a high level of pernicious anaemia (a precursor to rheumatoid disease, of which I was unaware at the time). My GP in London didn't know what to make of it and didn't explain her fears to me but made it clear she was worried. I simply brushed it off as some weird anomaly of pregnancy and gave it no further thought. However, I was never well from that stage onwards, suffering a variety of what I know now were mild symptoms connected to SLE. Two years later, by then having moved to Sussex, I contracted an extremely nasty Asian flu virus and that's when the SLE really got going with a vengeance - I simply never recovered. Lupus was not properly diagnosed until my son was 9 years old so I endured quite a few utterly miserable years of being told I was "just depressed" and imagining my symptoms. There really are no words to describe what my then GP put me through due to his ignorance - some might even call it "negligence" bearing in mind the symptoms with which I was presenting. I eventually saw a consultant privately who immediately identified the possible problem. With diagnosis by LE Cell test came a verdict that my SLE would likely abate after the menopause. Tests had shown it was then attacking my ovaries and thyroid glands and a very early menopause followed. However 12 years on - 2 years post-menopause - my symptoms have intensified, not waned. This may not, of course, be true for everyone so don't stop hoping. It can also simply "burn itself out" for a lucky few - 1 in 450,000 I believe. I've since discovered my maternal grandmother battled RA so the Rheumatoid Factor, in my case, was likely inherited.
That's a good point to make Tigerlily as sometimes I think I hope too much, particularly this week when I have had two 'good' days in a row and as daft as it sounds I think that it is going away. My husband says to just enjoy the good days but to be more level headed about the fact that it probably won't just disappear. So it's worth reading your statistics about it burning itself out. I think Roobarb's comment about "Dancing in the rain" is one to remember whilst I will try not to hang my hat on it all disappearing.
Lol Mstr, I tend to think exactly the same - especially if I have a rare few "well" days in a row. I suspect most of us probably do ... likely MUST in order to retain a modicum of sanity. It strikes me as being a little like childbirth ... on better days you can forget exactly how awful the lupus it is ... until it returns! And you never know, you, me any of us here, might be one of the lucky few for whom it simply burns itself out. There is hope, however slim!
I think mine started back as far as 2006 (though maybe not realising it) or this could have been back as far as 1999 when my sister lost her 18 year battle with renal failiure / coplications
My future son in law died in a tragic accident, he was in the navy and took a friend home ready for a weeks leave, and did the sensible thing and didnt drive home so he could drink, but unfrtunatly he didnt know the area and fell into an estury and very saddly drowned
My husband and I both worked at a job we had found to be the best ( stained glass artists), then 6 weeks after our son in law died we we were told by someone we thought to be a good friend and owner of the glass business that all was getting to stressfull and we found ourselves out of work.
My father in law was diagnosed with oesophagus cancer and after a fifteen month battle he died (2oo9) in this year we also lost my husbands grand mother and aunt, my aunt and a close friend of our
Our son was involved in an accident in 2008 where unfortunatly an elderly lady died and as a result he endeded up in going to prison for fifteen months from Nov 09 to Feb 11. so prison visiting at 4 different prisions
A week before our son cam home (Feb 2011) I lost my voice mid conversation, it wasn't sore at all but it sounded as if it was, 2 weeks after loosing voice throat was sore for about 6 hrs, then it went away, a couple of days later my right ankle was very red swollen and painfull I honestly thought I had twisted it but had no recolation of doing so, about 3 days later my right shoulder was very painfull and stiff, after a trip to A & E they prescribed anti in flamitarries and pain killers advising to see own GP if any further problems, and thats when the fingers / hands / knees all joined in with pain / swelling / redness general tiredness etc, after seeing my GP and having kept a record for 5 weeks I was refered to the Rheumy, who I saw in June 2011 when he made his diagnosis of SLE, and in July of this year was also diagnosed with RA.
I to was 50 last year so not sure if that added to things, I had a hysterecomy some 14 yrs ago leaving one overy, so had some menopause symptoms like hot flushes.
I think that just about sums up my how my lupus started, Also forgot to mention that my husband has on and off suffered from depression for 20 odd years and has been very bad since Jan this year when he has been signed off work , as a result, and my dad died back in 1967 when I was 7 yrs old.
Seems an awful lot when written down, but at the time you just work through these things and carry on
That's a very sad tale Lupydragon - hugs to you <3 Undoubtedly stress alone can and does trigger SLE. I had a good friend whose lupus was triggered by the death of her husband in an RTA. There's also evidence that hormones play a part. Still so little is known about this disease. The researchers need to get a move on please!!!
It's thought that my Lupus was triggered initially by glandular fever at the age of 15. It wasn't diagnosed immediately as the GP I saw just wrote it off as an infection and I was only diagnosed six weeks later. Years of struggling with my health followed but no one ever pinned down something as being wrong although I worried that I never felt truly well. In 1993 I lost my mum to cancer after a three year battle, my husband was made redundant and with his new job we ended up moving from Surrey to Greater Manchester. The first major Lupus flare came a few months later. So initially the GF changed my immune system and stress triggered the rest!
I ahve had odd symptoms since I was in my Teens, always had chilblains, heavy periods and then 3 miscarriges, to keep my children I ahd to have hormone injections twice a week so interesting hormone involvment! then I hurt my back and thats when it all started I think stress played a big part in it, as I ahd just started working for Social services I was asked to join the team looking after a quadrlapedic (spelling) on my first morning I tried to get up and the pain in my back was agony so had to ring in sick! saw the doctor who diagnosed siatica and was told to come home and rest, the problem was no better and went on for Months during which time I ahd to wave my Husband and the team off as they went to Romania we ran a charity that took aid to Romania twice a year for 9 years until I became ill I was gutted that I couldn`t go I then saw a doctor for social services who started talking about operations on my back I was so scared and Hubby was away as well, feeling I was not gettin any better with the pysio from the surgery my HUsband asked for a second opinion I was sent to see a back specialist who was private payed for by my surgery he got straight to the point and diagnosed a disk buldge, he suggested a cordel epidural which I had I was told to stay in bed for 2 days to let it take effect on the second day my boss from Social services came and sat on the end of my bed and sacked me oh boy that hit hard I knew it was because of health problems but I have never had the sack, during that time my oldest Sisters Husband had a massive stroke and died at the age of 53!! just after the funeral the rash started then the stiffness and pain and after that it took 4 years to a final diagnosis of Lupus so again stress played a bit part as did hormones as well at time of diagnosis I was going through the menopause
Hi, mine started when I got an infection from a c-section that was mis treated. I was discharged after 16 days 2 days of being really ill I had a fit and was rushed to the countess of Chester where the worked on me for seven and a half hours. I died and they told me that the trauma to my body had kicked the lupus into life. I am now disabled have multiple diagnosis and all this because Glan Cleyd hospital in Boddelwyddyn near Rhyl in North Wales is such a really crap hospital. I lost my job that I loved and now can't be the mum I want to be to my twin boys.
what a usefull thread this is. my lovely mum who is 84 had a massive heart attack and was on life support. i am very close to my mum and my sister said she noticed how i mmediately was never the same. the shock kicked in my mild lupus. but when i tried to help myself the hydroxy made me flare really badly and i am having a flare for several months a lot of discomfort and depression but as yet no organ activity.
also i am 50 and my dr has said perimenopausal so this did not help. i dont know anyone in my family with lupsu or autoimmune problems. i fear for my three daughters as i would not wish lupus on anyone. its a very testing diesease in evry way.
Hi, like a lot of the others who replied mine started after glandular fever when in early teens. Won't bother you with all the ups and downs as I know you will be familiar. Good news now is I'm 73 and in good health, mange lupus mainly by being careful in the sun (easy in U.K.!!) and trying not to stress - not so easy as I'm one of natures worriers, still as I age I realise that a lot of worry is poinless, so I'm learning....Good luck
There are some heartbreaking stories here, and it is plain that it would be short-sighted to put our conditions down to any single cause,
Stress ( in some cases major trauma) , lifestyle, environmental factors and infections have a part to play as do our own physical make-up and genetics.
A miscarriage can be caused by ANA, but will in turn create more emotional upset and who is to say what damage that will do the immune system and a persons emotional balance. And what if that upset is not reconciled or expressed fully?
It is easy to forget that an emotional response is defined as involving a hormonal discarge into the blood stream, it is a whole body experience. Its visceral and not some fleeting ethereal whim.
It is unbelievable to read what people go through and survive. I was in tears yesterday on the phone with my mum, really scared about the disease progression and feeling really sorry for myself. Reading this trail has put all that into perspective, I will just have to find the same courage and strength that you all have found and i will be able to go through it. Thank you all for sharing.
Hi my symptoms started when my 2nd child was 6 weeks old, with awful joint pain and inflammation. My mum recognised the symptoms from one of my older sisters(who suffered from but unfortunately didn't survive Lupus) I was really lucky and had a firm diagnosis within 6 weeks from the onset of symptoms. But it was already on my notes that I carried the lupus gene from blood tests 8 years earlier when my eldest sister was also diagnosed, so I was able to ask for the tests to be done straight off.
Best wishes
Wendy x
Hi, I have MCTD, but can say that it all started 6 years ago when in the space of 6 months my Mum died of cancer, my Aunt died suddenly, my sister died of the same cancer as my Mum, and I found out my husband of 16 yrs had lead a completely separated life and had had affairs with more than 10 women (I stopped countng at 10, you do have to draw a line!).
So I was left as a single parent to our son who was born 3 months early and has special needs - That's what I think caused mine.
I have been really touched by all the other stories - it's just goes to show how stress affects us...
HuGs to everyone.
Xx
Wow I never thought I would get this many answers, thank you all its been interesting reading through. From this I am reading stress, bugs that attack the immune system and trauma are all triggers. For myself I think it all started 30 years ago if not more, my husband was in the RAF and we moved around so I never really got to see the same Drs twice. I had a very bad reaction to a mosquito bite, then another bad virus, my sister was killed in a car crash, my kids were in Afganistan and things were really just getting on top of me health wise, I have been seeing the same Dr now for 5 years and hay presto she has put it all together and hopefully things will settle now (well we can all dream lol).
THANK YOU ALL x
I was diagnosed last year at 34 but I believe I was born with it. Hindsight is a wonderful thing and it took my GP with my full medical history to work out that there was something immunally wrong with me and I was mid massive flare. Looking back now the first symptoms that are obvious to me were as a child sitting on the potty and I had bowel problems then, skin lesions a few years later when I got stressed or upset, arthritis at 5 years old crying in the winter becuase my bones hurt, the list goes on. The final straw which made it how it is now is a bout of stress and the flu at the same time. My GP then worked it all out when he saw me and told me to go home and not get out of bed.
My father's cousin has it, along with her daughter and we now know immune disease runs in my Dad's side of the family and with my Mum's MS I'm a rare mix according to my rheumy. I remember my Grandmother saying that when my Great Grandmother was very old before she died my Grandmother bathed her and her skin looked like alabaster, as if she'd never seen the sun. in that age they wouldn't have know what it was that made her sick but perhaps now we do.
Interestingly much the same as above , I took a flu like illness which I recovered from
However as the months crept on I developed joint pains in the morning (I even convinced myself I was having fits in my sleep and that's why I ached so much !) I struggled thinking I was either depressed or I had some horrible cancer .
I only eventually went to my dr when I couldn't hold a pen and a colleague threatened to tell my parents how unwell I was .
The years ahead were up and down but I was just grateful I didn't have some horrible cancer .I get by trying always to be one step ahead of lupus . I'm positive genetics play a big part and the viral illness was a trigger to an dormant disease as I discovered my great grandmother had rheumatoid arthritis .
I remember as a teenager having to lie down after any strenuous activity, feeling nauseous and tired. My mother took me to doctor, he said I had kidney infection and admitted me to hospital. Once clear was sent home, but over the years I would recognize that same feeling occasionally. Had lump removed from breast at 19 (OK). Over the past 40 years I have had all sorts of weird rashes, shingles, pneumonia, lots of UTI's, hospitalized 3 times with kidney infections, endometriosis and fibroids, blood and trace protein in urine, and three lovely babies although had to spend 3 months in bed with first. Christmas 2011 was spent in Mexico, but I was not feeling well and was having naps in afternoon, yeah naps while in Mexico should have been warning. In March 2011, went with friend to Spa to celebrate her birthday, and got a facial. One part of facial was relaxing with quiet music playing and an ULTRAVIOLET LIGHT shining on my face. Two days later my eyes were affected - swollen, red and sore. By the end of week my face was red and sore and it eventually was all over neck and chest. I was exhausted and did a lot of reading and laying on couch, and going to doctor to find out what was wrong. After 3 months one wise docotor in emergency did ANA test and I was referred to Rheumitologist. Nurses and people that thought they were docotors all said I was to old to have Lupus and not to worry. I believe Lupus has been in my life for a long time, it just got ticked off having that light shining in my face. Well, what ever I have the Prednisone and Plaquenil helped a lot to make things a bit more normal, and everyone says how healthy I look with these nice rosey cheeks.
Hi luupysue!I had a very bad dose of Glandular Fever when I was about 16/17.The back of my throat virtually closed up and I ended up in an isolation room in hospital.At the time they thought it was diptheria but it turned out to be a very aggressive bout of glandular fever.Following that I had depression for many years and then was diagnosed around 1985 with SLE,osteoporosis,pulmonary Fibrosis and other little ailments.I am sure it is related to a viral episode although also exposure to hot sunlight had also made me feel very ill in the past before I was diagnosed.It's an interesting thought but I was never the same after I had GF.
Forgot to mention that stress has a major part in my everyday life.If it's ongoing I can feel very poorly...so could it be a stress factor that triggers the Lupus?Also my body does not like strip lighting!Thinking about it there are lots of factors......???????!!!!!!!
It is fascinating reading every one of these stories. There seem to be a very high number of Menopausal causes, and stress factors. I believe my diagnosis was triggered by a spinal operation at the age of 15. although there is a history of rheumatoid arthritis on both sides of my family.
I was diagnosed with scoliosis when I was 12 and later went in for an operation to fix the curvature. I believe that the minute the doctors opened me up, my immune system went haywire! I can just imagine my little cells in my blood yelling "hurry up and close this big gaping hole!" Ha! At first, tests were positive for APS, and so I was on asprin for a number of years. I remember reaching 16/17 and began getting aches and pains and then tests proved I also had SLE, and to add the already cocktail of medication, when I was 18 it was discovered that I had CNS lupus, causing seizures and severe memory loss!! Now I only have to shake and I rattle like a maraca! 
But despite it all, I believe firmly in what roobarb has written. Learn to dance in the rain, rather than waiting for the storm to pass... Just look at how much fun Gene Kelly had in Singin' in the Rain! What a glorious feelin' I'm haaapppppyy agaaaiiinn!!! 
I was always a very sleepy, quiet child. I had very severe german measles when I was a baby, then severe chicken pox when I was 4. Other than that I had nothing really noticable. My nan and 3 of her sisters had rhumatoid arthritis.
However hindsight is a wonderfull thing.
Looking back now I can never remember being well when I was a child, I was always lethargic, had colds, aches and pains, but it wasnt too bad.
I recently went over some paperwork my mum had, I had an accident when I was 13 which resulted in a pretty nasty head injury, looking at the records from this about what happened, hospital admissions, test results, school reports etc, it sounds exactly like the flares I have now.
I believe after the accident I had my 1st noticeable flare, I think the disease went into remission after this, again I remember never having much energy, I always caught colds and bugs easily and it took me ages to recover.
When I was 23 I was getting married and was under a lot of stress, my husband to be was taken very ill 3 weeks before the wedding and he spent a week in intensive care and very nearly died, our wedding day was his 1st full day out of bed.. I think these events and the stress caused the lupus to become active, I became quite ill very quickly and have never recovered, in fact I just seem to get worse.
I believe my lupus and other problems are a combination of genetics, stress and trauma
x
Just got to say thank you to everyone for replying to my question its been very interesting hearing what we think brought this awful condition on, I often wonder if Dr's or researchers look into these sights and have ever asked the same sort of questions. Once again THANK YOU ALL,and good luck xxxx
At 14, I was diagnosed with Chronic Fatigue Syndrome (my mother has MS - doctors assumed I was 'faking'). At 16- glandular fever. At 18 I lost my eyesight completely for four minutes (no reason given), at 19 I was diagnosed with IIH... At 25 my symptoms got worse- I was told migraine with auras... Months on and I'm now suspected lupus - I had my babies both in the last two years...
Who knows the answer to this question..
Stress maybe, this doesn't help mt lupus at all
Pregnancy for me is when I noticed first symptoms, then massive stress and an infection triggered off my first big flare up 3 years ago, only diagnosed this year.
When I was young I was prone to bronchitis and URIs, they were linked to allergies, but it was a marginal link.
I had a serious chronic bronchitis issue in my late teens, with asthma symptoms and about 6 months of illness after the infection was beaten down with multiple antibiotics. They eventually put me on inhaled steroids.
After that I had nothing happen for a while, until a fairly random burst blood vessel by my optic nerve at 18.
About a year later I got pregnant, which ended in miscarriage, and that was when the worst of my symptoms showed up the first time. Joint damage and pain, additional lung issues, etc...
The miscarriage was probably a trigger, but it could have been the pregnancy, the stress, the physical effects...who knows. Honestly it seems likely I was born with some auto-immune issues or that documented early radiation exposure caused them. Impossible to know I suppose.
Does anyone know of how to find out if there's a Lupus support group in my area?
Stairlifts, anyone know much about rough costs etc? 
When did your Lupus rash start?
Anyone else not got a 'formal' lupus diagnosis?
