View Full Version : Hi, new from Australia, diagnosed two years ago and still struggling.

12-14-2012, 02:58 PM
Hello, I'm from Melbourne Australia. I was diagnosed with Lupus 2 years ago. I'm still trying to adjust my life around my condition; it's hard and just when I think I'm on the road to acceptance, BAM! I go back into denial again. It really has been a grieving process for me. I've gone from being a busy mum of four who ran 5-10km a day, went to gym, was studying, had plans to become self sufficient through vege gardening and animal rearing and planned on getting a job when my youngest started kinder. Now, I'm lucky if I can walk 20 minutes without needing to rest, struggle to complete my Diploma because my wrists and fingers hurt so much to type, can't go out in the sun even to hang the washing without inducing a flare up of symptoms and find it nearly impossible to meet the needs of my four beautiful children with a busy self employed husband! Life has done a full about face.

I've been 'sick' on and off for years with vague 'flu like' symptoms. When I look back on my childhood, I see that I always had autoimmune stuff going on; chillblains, chronic bronchitis, chronic tonsillitis and lots of night fevers that went unaccounted for. Two years ago, everything came to a head. I'd started to feel really lousy about 8 months prior. I put on alot of weight, felt tired all the time, had rashes for no reason and just felt generally blah. Then, overnight I developed a very high fever, full body rash and the worst aches and pains I've ever had in my life. In retrospect, I should have gone to hospital but you know what us mother's are like; I'll be okay...

Two days later, I'd survived whatever it was that felt like it was trying to kill me, except that now I had severe arthritis, mainly in my knees, feet and elbows.
This lasted a couple of weeks, at which time I went to the doctor's. They thought I had Ross River virus and referred me to a rheumatologist. He did some bloods- all negative, and declared that I had fibromyalgia. I knew this was just blowing me off; I didn't even have the tender points...

Two months later, more bloods, more symptoms and I got a Lupus diagnosis. I was started on Plaquenil and Prednisone and started to feel better. Stupid me though, I changed Rheumy's because this guy had shocking bedside manner. Now the new rheumy said I had UCTD and fibro and wouldn't treat me with anything buy fibro drugs. My symptoms flared back up and have been like that constantly until present day.

I've decided to change rheumy's again; I'm going back to the first one for the treatment benefits. I'm not sure why the second rheumy took the Lupus diagnosis away; I have all the symptoms and the pos bloods; she was nasty and ego-oriented and would never listen to me or explain herself. It was a bad relationship to start with and I think she took offence that she was my second choice...
I've heard of people having total remissions and continuing their normal lives. This is something I'm keen to achieve. I get really depressed when I think about spending the rest of my life feeling like I do now.

I've had pleurisy and meningitis this last year as well as kidney stone treatment which really set me back. Prior to the lithotripsy procedure (for the stones) I felt like plaquenil was finally starting to make a difference. I'd stuck at taking it for 4 months; previously the nausea and tummy upset had caused me to give up but I stuck with it and finally saw some results. Anyway, everything went backwards and now I'm back to having joint pain, malar rash, fatigue, nerve pain, nausea, headaches, muscle pains, insomnia, mouth sores, ear aches and pretty much any other lupus symptom you can think of. I haven't had kidney or heart involvement yet.

I'm a member of another support forum and I've gained invaluable advice and empathy from other people; though there aren't many lupies on that forum so I'm looking forward to talking with other people who know exactly what I'm experiencing and who like to share their experience too.
Thanks for reading,

12-14-2012, 03:56 PM
Hi Tiff! Welcome to the WHL family!

It does take the plaquinel between 4-6 months to completely work which explains why you were starting to feel better. You might want to try taking it with food. That seems to help people that have some stomach issues with it (I have other stomach/bowel issues so if it bothered me I never noticed).

Sadly your story is one we hear all too often. Too many doctors (even rhumies) don't really understand how to diagnose Lupus and they look for a specific test to show positive when there is no single test for Lupus. I have found the same experience as you, often the best specialists have the WORST bedside manner! I do hope you get back on your meds and are able to start feeling better.

Please make yourself at home and I look forward to getting to know you

12-16-2012, 06:05 AM
hi tiff, and welcome from another aussie.
there is actually quite a few of us on here.

you may also want to talk to your doctor about folic acid.
they should explain what it is for.....
if they dont come back here and we will.

12-18-2012, 05:22 PM
Hey there Tiff, welcome to WHL, and the wonderful world of "I'm a doctor, you're not" that you've also experienced. It's amazing sometimes when you think about it, how many doctors' kids whose college I've helped pay for, or similar, with all the money me and my insurance have paid out over the years. You'd think they'd be grateful to have sick people asking them questions. But I have encountered quite a few docs over the years that have been great, probably over a 2 to 1 ratio anyway, but we always remember the rude ones, especially the rheumies... tic.

Anyway, longsleeves and slacks, hats and even gloves, along with sun screen have become my daily routine, and even though it's "winter" here, I'm still having to cover up. I'm beginning to suspect that the "filtered" flourescant lights where I work have been replaced as they wear out with cheaper unfiltered alternatives, since I've been doing what I'll call mini-flares too often the last few weeks. It takes some getting used to changes you have to implement in your life to accomodate lupus, but you'll get the hang of it. Here's to hoping for at least a reduction in your symptoms, and to finding a good doctor who's not a jerk...

01-04-2013, 06:08 PM
Hi Tiff, I am from Adelaide. This is my first time on any forum and read your horror story, so thought I would reply. You have sacred to wits out of me in a good way, because although I haven't been confirmed with Lupus, I really didn't realise the extent of the disease. I have read a bit about it but denial is the root of all evil as they say. I recently went away on holidays, forgot my medication and because I felt so good when I came back I didn't resume taking them. Big big mistake as now I feel like I have been hit by a bus and reversed over. I was on methotrexate, plaquenil, folic acid and prednisolone. I have since recommenced my tablets with the exception of the prednisolone as I got skin problems with it. I was really active trekking to Mt Everest base camp and I scuba dive but now I am struggling to walk up a small flight of stairs without getting out of breath. I am hoping I haven't done too much damage by not taking the tablets but I honestly just got sick of taking them. Now my Vit B is rock bottom so to add insult to injury I am now on Ostilin. More tablets. With the weather we have been having just a minute out in the sun should give me enough Vit B to last the rest of the year.
Anyway, that is my tale of woe, but I can certainly appreciate how you are. Keep a smile on your face and make up on... Look good on the outside even if you feel like crap on the inside.
Regards from Adelaide

01-07-2013, 12:31 AM
Thanks for your response Aussiegirl; I just posted on your introduction without first checking mine! Sorry. Well it appears we're in good company here; everyone knows exactly what we mean when we say, "We feel crappy!".