[KarolH]

I hope this Friday night finds everyone well, resting and relaxing and enjoying their drink of choice.............mine is coffee with a splash of Kaluha.:wink2:

I am curious as to how YOUR Lupus started and if you can think back what was your first symptom?:umm:

 

[Jenkay]

Good evening,

My first was severe joint pain in my knees. It came and went for years prior to the other symptoms starting. At the time I thought it was from the sports I had played (figure skating and roller blading down strairs) but little did I know it was just the start of the lupus.

Jen

 

[Kate*H]

I don't know exactly how it started except I had just gone through a year of extreme stress and losses. My pain started as a burning and stiffness in both hands. Kate

 

[Clare.T]

What took me to the doctor's was a sort of 'spot' on one cheek. When it hadn't gone after six weeks as one would expect normally, I went to the doctor's but luckily I was in living in Belgium and could go to a dermatologist without referral. Even more luckily,looking back, she was a very clever doc and opined it was lupus after one look. Since it didn't at that time look anything like a typical lupus lesion, I am amazed. Confirmed by biopsy.

I did have to wait 26 years for a 100% correct diagnosis and effective treatment but there was little medical information and still less publically available info or support, 35 years ago. And I was moving round a lot which certainly didn't help despite being able to access the best specialists in Europe. Also the medicine that has proved the greatest value to me was not available even when one especially good rheumy suggested it as a possibility.

Cheers
Clare

 

[Lily]

Hmmmmmm long time ago (in my mid teens) but I spent a couple of weeks in bed with a 'mystery' illness, severe facial rash, joint pain and absolutely debhilitating fatigue.

love
Lily

 

[Clare.T]

With hindsight there were signs of trouble on and off several years previously but nothing without an apparently simple explanation.
Clare

 

[fenrus]

well, it was my Raynaud's that prompt my mom to freak out and ask the doc to do every possible blood test to see what was wrong. which eventually led to the Anti DNA test.

I have partial blind spots in my left eye due to vasculitis, but my vision in my left eye has always been worse for as long as I can remember. I wonder if this actually stems from way back.

 

[granny weatherwax]

Um this is a good one to get the grey matter working.

If I think back I had a real problems with my knees when I was about 13yrs old. they were really painful and would swell up. It was around the time my period's started roughly. This carried on into my 20's in fact I don't think it ever went away. I also had glandular fever and the fatigue never went away after that. So I think that was probably the start of it! Got diagnosed last year (21 years later)!

ClaireXXX

 

[DnA]

My mum always says that my health fell to pieces when I hit puberty! Lost quite a lot of my teens to 'mystery' illnesses and at the time undiagnosed epilepsy. My GP at the time told I needed psychiatric help as I was making up what I later found out were epileptic absences.

Like Claire my 1st diagnosis of lupus was when I had a wierd spot above my eyebrow. Had it biopsied when I was 20 and was told it was discoid lupus and a new GP told me it was nothing to worry about. I then had to wait until I was 36 to get any treatment!

Sammy

 

[sjink]

Hi

I was very ill as a teenager, lot of kidney infections, unexplained fatigue, swollen glands. Also migraine type headaches lots of allergies and depression. But it was not diagnosed then (probably not known much about then) and I think the doctors thought I was malingering because despite three assessment periods in hospital nothing was ever found.

But 8 years ago after a year of really bad knee pain, depression and fatigue (doc had diagnosed ME) I had a severe flare with all over arthritic pain, itching rash all over, blinding headaches. Hospitalised with what they thought was first Lymes Disease, then RA, then allergy to Prozac, then drug induced lupus and then 6 months after that hospitalization finally diagnosed as SLE.

So first symptom in teens was really all those unexplained symptoms. But it took the arthritic pain and rash at age 45 for a proper diagnosis process to begin. Looking back I really think in my 40's it was the knee pain that was my first indicator, I could no longer walk far or dance without them swelling really badly, and then my feet would hurt too. I did not link this pain with the fatigue and depression until I started searching the internet.

Sara

 

[LoopyLoo]

I had small patches of 'eczema' on my eyes, forehead and cheeks. I saw a dermy privately who must've considered lupus as he did an ANA test but I was oblivious to it at the time.

Not long after I had my first flare with a terrible butterfly rash and sore joints but it took another 8 months to be diagnosed.

As others have said, looking back I had unexplained symptoms in my teens and people just thought I was a hypochondriac as I never felt well.

HTH,

Pam xxx

 

[Nutty]

I was diagnosed when I had serositis (inflammation of the lining of the heart, lung and abdomen) about 2 1/2 years ago. This came on after suffering two massive blood clots, one in each lung. Then I had 4 litres of fluid on my left lung removed. Then the serositis kicked in. Because the fluid was around my heart as well, that led the doctors to the Lupus diagnosis.

However, I first had blood clots in my lungs in my early 20's when I was taking the birth control pill for a cyst on my ovaries. At the time they blamed it on the pill, but I wonder if I had Lupus back then? I'll never know.

Good thread!

Nutty

 

[neongirl]

illness consisting of fever, what I know now as a malar rash, extreme fatigue and eyes very light sensitive.

 

[KarolH]

Very interesting to read about everyone and how things are similar yet different too. My energy level has never been good but I really believe my Lupus was triggered by a fall in 2003 when I hit my head.

Every since then I have never been the same.

 

[Surferboy]

My first ever symptoms were severe pain in the knees and elbows.

At first I was diagnosed with possible RA. But it was after the blood tests that they said SLE.

 

[mooks]

This is an interesting idea for a thread!! I think my first real problems were unexplained fatigue and nausea. It then developed into joint pains and thats when my gp sent me to the rheumatologist. But looking back I hadnt been overly healthy since I was about 15...always had kidney infections and reoccuring glandular fever.

 

[greenhaggis]

My first known health problem was unexplained rashes/wealts "age 3 months" - my Mum just got prescribed some sort of green coloured cream to smother me with! They never did any blood tests, and skin stayed sensitive! My Mum (bless her) though it was due to the English sunshine!!! She had just migrated from Scotland to England when I had this first outbreak!

Had many other things occur in years to follow - allergies (especially milk intollerance as a baby), insect bite allergies, growing pains, allergic to Septrin (antibiotic), nausea, temperatures, swollen glands, migranes, cold extremities, hip and knee pains, swelling of knees, more rashes, episodes of flu like symptoms and major weight loss --- this all was before age of 21!

Many more things followed!

Diagnosed with SLE in December 2007, just before my 40th Birthday.

Take care all!

Lesley

 

[marymackay]

start of lupus

Hi All

Such a great thread thanks. My health problems have been on/off all my life, and in hot/cold climates. As child in Southern Australia always chilblains on hands, feet -joint problems, doctors saying at 11 have one shoulder lower than other, had pigeontoes, using special shoes, protruding teeth, braces, ringworms. As student teacher had to sit down on stool, couldn't stand. Wisdom teeth fell to bits, married 4 children- problems with first birth at 7months- week's hospital with pyelitis-kidney-blood transfusion, with 4th child at 7months in hospital bleeding, but he came okay. Later had rash all over body- doctors gave drugs -got better. No-one connected that with start of contraceptive pill.

Moved to north Australia- teaching fulltime for 10 years- had a frozen shoulder- better. After 10 years on pill, lI'd had headaches at end of most days. Then neck was so bad had massage- agony, then came blinding headache-dying- to hospital- but as records now show I was in a coma for 3 days, no x-ray until a lady doctor flew me with suspected cerebral hemorrhage, parlysed leg. Had aneurism operation, 6weeks in hospital there.

Back to teaching after 5 months, I was supporting family, husband ill. Then 5 years later I had random grandmal fit, put onto dilantin. Children grown, had second frozen shoulder, many kidney problems, 2 curettes for bleeding, divorced husband. Still teaching fulltime, sinus, laryngitis, thyroid problems often. Went south to study further, taught in Papua New Guinea.

In the Highlands, had to fly back to Australia- no speech- another stroke-bleed. taught self to speak with recorder-back teaching, swollen carotid near scar.Started doctorate- but was in 19C on campus, so had carpal tunnel operation on right wrist. Just finished, revising, when I went to doctors as felt could be stroke. For 18months they had no idea, just drugs.

Then scalp filled with sores, gums falling to pieces- growing hard palate. No specialists here. Hands, arms, legs swelling, no help, until had to force GP to do tests, ANA and APS both positive- not high. Had 2 eye operations. Of course you understand that I am now on Plaquenil since Sep, helps a little, after seeing 2 rheumies. Sinus so bad last year, I knew I was allergic to Penicillin, Septrin, Bactrin, Phenergan, so nothing helped.

At moment have had skin biopsy down south, kidney cystoscomy up north for high red cells, and nothing decided yet. To have a salivary gland biopsy soon, and down south to connective tissue specialist too.

So I receive most of my support online, making so many wonderful friends and finding information. I enjoy the many lupus/aps books.

 

[Douglas]

Thank you, KarolH. A good idea for a thread.
I see I am not alone in citing knees. From arthritic symtoms in the knees it spread to all the large joints. "All the symptoms of rheumatoid arthritis without a positive rh" was the diagnosis then; nobody checks ANA in men.8)
Douglas+

 

[KarolH]

Your welcome Douglas.:wink2:

No ANA on men????? OK, enlighten me please.

I see resemblances here in all of us and find it interesting as to how we all had similar things growing up.