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View Full Version : Hi! New to forum, new to Lupus!



~CJ~
05-13-2011, 01:01 AM
I haven't been diagnosed, am in the researching stage and finding it hard to get any answers when I would love to discuss things. Getting any type of explanation to my medical 'issues' has always been a challenge to say the least. Hope it's ok to be here!

I'm CJ, 28, and a single mother of two school aged children living in a rural area of Western Australia. Life isn't always easy, and I would love an explanation as to why. I have suffered from chronic fatigue and permanent headaches since I was 12. Frequent periods of anaemia, and always excess protein in urine (also had hydronephrosis and pylonephritis) I also have reasonably well controlled hypertension (high dose of anti-hypertensives) with unknown cause (I am healthy weight, no other risk factors present). However with exercise it becomes unstable with extreme dips and highs I am unable to control, to the point of passing out. Despite my young age and fitness levels, I have suffered 5 miscarriages, again for unknown reasons. Then there is the 'dermatitis' that covers my face at times, the arthritis in my wrists, the constant battles dealing with chronic pain (on endep and take endone for breakthrough) it just seems never ending.

The lethargy, permanently sick with *something* is depressing (which I also have a diagnosis of, naturally!) and I feel like there has to be an underlying cause. It was research into a couple of symptoms that I came upon Lupus, and thought what better place to start than a forum...as I cant get into my GP for another 5 weeks.

I would love to chat about it all. Would also be more than happy to hear "sorry, you're in the wrong place! Sounds like you have xyz...and there is a magical pill that will fix EVERYTHING!" so by all means :)

~LUVMYFLOWERS~
05-13-2011, 04:01 AM
Hello Cj, And welcome to WHL! Im so sorry you surley have gone through a lot of health problems. And the symptoms you describe sound so connected to lupus, But im not a doctor
just smeone living with lupus and other overlapping al diseases. There are a lot of great thread's you can read up on here also lot's of wonderful people here with different types of al diseases that will come along soon. I also have a lot of the symptomes you describe, and
my dr's dont get one problem under control before another is already started with something else. Sure hopeing your G.P. can get it all sorted out for you ! Hang in there and im so glad
you joined our wonderful family!!! Hug's ~Diane~

steve.b
05-13-2011, 05:43 AM
hi.
i have sent you a private message, click on the link at the top of the page.

Peridot20_Gem
05-13-2011, 06:04 AM
Hi CJ,

Welcome to our lovely large family of the WHL and it's nice having you with us and your with the right people concerning your suffering and what you've gone through so fare but as you read the threads you'll find answers from what your suffering while in the researching stage, what do you actually mean by that comment are you looking for answers or are you under a specialist where bloods are being taken? and to wait to see your doctor is abit disgusting 5wks.
With Lupus you can get A1 Diseases and also Autoimmune disease, i always state these two points out Lupus if you do have it thrieves on stress and depression which will make symptoms worse as i well know that myself and when bloods are being took it fluctuates the bloods, so if you have a test come back negative it could be positive.

It sounds to me like you have anaemia properly and need B12 Jabs if it keeps coming back because that alone will make you very low and Lupus causes very bad fatigue and tiedness plus a foggy head. I lose protein and that comes from the Lupus and refering the headaches that does come from it also and they can be very extreme at times. I know it's hard with two young children but until doctor's are sorting you properly try and pace your daily routine more to save waring yourself out.

Refering your miscarraiges it can cause that in a woman and it can also stop them from having children i'm 42 and never had a child, yet with some women they have been lucky otherwise besides yourself to give birth, it's such a rather complicated Disease.
The suffering your going through with Dermatitis comes from Lupus also i have psoriasis and it's gone mad with my skin, i really hope the doctor's can hurry you up to get a proper diagnosis.

I wish you all the very best CJ.

((Hugs Terri)) xxx

tgal
05-13-2011, 07:07 AM
Welcome to WHL CJ! I am so glad that you joined our family. So many of us have been where you are. We stay ill and no one can figure out what is going on. We have to start searching because we need answers and we are not getting them. There is wonderful information in this forum so feel free to look through the old threads or start new ones if you wish. I look forward to getting to know you!

lizbond36
05-13-2011, 08:02 AM
Welcome Cj to the family, I was Dx on the 2nd of May this year. I have learn so much from this group. I only wish I had found them early on. I too play these doctor games for the past 7 years. So I know what your going though, look around and learn all you can from this ugly disease.
Hugs
Liz

~CJ~
05-13-2011, 05:57 PM
Thanks for the warm welcome :)

Yes, that's a 5 week wait just to see my usual GP, not a specialist! However as my blood pressure has been quite unstable i've decided to see another Dr next week just to sort that out.

I feel like a hypochondriac, am I supposed to actually ask to see a specialist? or for the additional tests into immune defs? I would love if they tried to find answers and it wasnt me 'asking' for things to happen!

tgal
05-13-2011, 08:55 PM
Hi CJ. I understand how you feel but there is one thing you will learn through this ordeal and that is that you have to be your own advocate. I know it is hard but you have to ask for/push for/DEMAND whatever you want to happen. It is hard to do but it is the only way that you are going to get the answers that you are looking for. Ask for the tests. If they don't want to do them then fire them and go somewhere else. You are not asking for them to make up a disease you are asking them to find out what is happening to your body!

Linda From Australia
05-13-2011, 11:56 PM
5 weeks to see your GP WOW that is a long time. I feel proud to be a Western Australian, but to hear you have to wait 5 weeks, now that is something to be ashamed about. What day do you see the other doctor?

Peridot20_Gem
05-14-2011, 03:28 AM
Thanks for the warm welcome :)

Yes, that's a 5 week wait just to see my usual GP, not a specialist! However as my blood pressure has been quite unstable i've decided to see another Dr next week just to sort that out.

I feel like a hypochondriac, am I supposed to actually ask to see a specialist? or for the additional tests into immune defs? I would love if they tried to find answers and it wasnt me 'asking' for things to happen!Hi CJ,

Your doing the best to see another doctor and your not an hypochondriac, all these symptoms if you do have Lupus can make you feel that way, i had'nt got a clue about Lupus, i'd heard of it having a friend near by who as it but i never looked at the symptoms.
I've got more info from my dermo, studying it and also joining the site and i've met some wonderful friends on here and so full of support.

You need to push and ask for things to be done because if not some doctor's don't rush themselves at all but try not to think alll sorts till you actually know what's going on with a diagnosis.

~CJ~
05-16-2011, 09:42 PM
Thank you :) I am seeing the other Doctor on Thursday morning. I am sleeping the majority of every day at the moment so need my iron levels checked again anyway, so think i'll ask about having other tests done at the same time. Otherwise i'll leave it till I see my regular GP, as I will be due for repeated kidney function tests etc then anyway. Though was trying to stretch my Dr visits out to 6 monthly it isn't happening!!

giggle
05-17-2011, 02:49 AM
Gee... Im never moving to WA!!! So many WA lupus cases! LOL Is there something in the water over there?

Welcome CJ! It sure does sound like lupus, but we cant diagnose you of course :) Either way you are welcome here, lupus or no lupus. I was diagnosed with lupus at 24 after the birth of my daughter. Having babies can be taxing on a ladies body!
APS can also cause miscarriage, I suspect I have APS in a mild form or such and the tumour that my daughters placenta was attached to was the only reason she survived. Getting diagnoses has been hard for me in rural QLD and I am 29 going on 30 now and am only now getting my other issues sorted. I think you sound like a candidate for APS and/or lupus. Neither are very nice. Lets hope you get a swift diagnosis :)

All you WAers should get together for a BBQ lol

~CJ~
05-17-2011, 03:17 AM
Just had a look at APS and that does sound interesting, given the miscarriages, preterm births (8 and 9 weeks early) and there was also a placental abruption at 4months with my 31weeker. Fun times during pregnancy!! Unfortunately despite the miscarriages and early births no testing was done, and as i've decided no more babies (as if there is a choice) I doubt anything will be done to figure out why.

I am originally from the NT and only down here in WA the last 9 years, so problems started up North...trying to deflect from WA here haha!

Peridot20_Gem
05-17-2011, 03:27 AM
Thank you :) I am seeing the other Doctor on Thursday morning. I am sleeping the majority of every day at the moment so need my iron levels checked again anyway, so think i'll ask about having other tests done at the same time. Otherwise i'll leave it till I see my regular GP, as I will be due for repeated kidney function tests etc then anyway. Though was trying to stretch my Dr visits out to 6 monthly it isn't happening!!CJ, All the best mate on seeing the Doctor on thursday and Lupus does cause a large majortiy of us to sleep, mind you taking loads of meds besides does'nt help we one bit. It took them 6mths to find that my anaemia had come back as the Lupus kept saying i was ok, see what it does to your bloods and now i'm on folic acid tablets and B12 Jabs for life.

Well all the best and keep we updated on how you get on. xxx

~CJ~
05-17-2011, 03:32 AM
That is really really interesting to know. When I was younger (early teens) tests would always come back for anaemia and I was on Iron supplements...naturally I learnt the symptoms. Yet in recent years I am so sure that's what's wrong and levels come back in the 'ok' range, not brilliant but nothing major. So I just stick to my normal multivitamin supplements and carry on.

Just reading through peoples sigs has made me realise that the sporadic issues with hyperthyroidism, tachycardia, and fybromyalgia could all be linked in there too. Never ending lists!

Peridot20_Gem
05-17-2011, 11:06 AM
Hi CJ,

Lupus or any autoimmune disease ply madness with your bloods, if your like me i knew i'd got the anaemia again same symptoms the lot and my doc was testing me and the rheumo department and the reading's was coming back 13.5 which is good for a woman 13.5/14.0 for a man 14.0/15.0 and after 6mths a letter dropped through the door on the saturday from rheumo saying i needed folic acid tablet's, a couple of months after saw the blood specialist who said you need B12 Jabs for life as Lupus eats aways what B12 gives you food wise.

I'd still keep on pushing with them CJ just incase it's there hidding itself as that's all you need.

Your right mate it is a never ending list and you'll really find the threads so interesting with what diseases can give you and you'll also learn so much.

Takecare mate Hugs Terri xxx