does anyone know anything about lupus!!

Hey,

i have been struggling for last 5-6mths with terrible bone aching!! i have been to the doc and she has done a variety of tests and she is thinking i have lupus!! we know for sure its not arthritis. Apparently there isnt 1 test that tells you, that you have lupus, its a very hard condition to diagnose(sp?)

i am on a waiting list to see a specialist, but i have a 6-12mth wait before i get to see someone!!

but i am not convinced that i have lupus, cos i find that my bones ache really really really badly around AF time, like a week before i am due and the week after. i told this to my doc so she done some more tests but all came back fine!! i honestly dont know if i can do this for much longer :( the pain is so horrible and its so hard to explain what its like. I am hardly getting any sleep because i cant lay down for to long, cos my bones start aching to much, i get NO sleep around af time cos its so so so very bad, i go to bed and i am up by 3am cos i cant bare to lay any longer!! i cant sit for long cos it hurts and i cant stand for long cos it hurts :( some days i cant even close my fist cos the bones are so sore in my hand.

but yet when af is gone, things arent as bad, my bones are still hurting but not as much as when af is around or due. I am wondering if anyone else has herd or knows anything about lupus and if its normal for things to get very very bad around af?? cos if its not normal for that to happen, then maybe its not lupus and could be something else??

whatever it is, i personally think its connected to af or the hormones around af?? i told this to my doc but she just brushed it off and said that the tests she has already done, are all looking towards lupus. hmmmmm i guess i will know more in a few months, but if there is anyone that might know something i would love to hear from you

I'd be leaning towards some sort of auto-immune problem. This could be lupus, it could be one of a number of forms of arthritis. Impossible to say until all the tests come back. Do you know which ones have come up with positive results?

I have a serum-negative rheumatoid arthritis, which is pretty much med-speak for my bones hurt and nobody knows why as all my blood work comes back fine apart from markers of inflammation being present. Anyway, it's fairly normal for RA to flare around your period - whether it be serum-negative or positive, it's actually quite a normal thing to happen. The pain isn't caused by the hormones, but the changes in hormones can trigger other conditions to flare. Have you been given any medications at this stage? NSAIDs are likely to give you some relief (ibuprofen, naprosyn, voltaren, etc) but aren't safe in pregnancy. Panadol and panadeine are safe to take, but while they do help they don't help a lot. You can take a steroid such as prednisone which will help reduce the inflammation and reduce pain and is also safe to take during pregnancy... I have to admit that with evidence of some sort of auto-immune condition and a history of miscarriage I have alarm bells ringing. The two things could very well be related and it is possible that you may need prednisone to help maintain a pregnancy anyway.

I hope that's helpful... and remember that it's all just my opinion and I don't have any sort of medical training at all, just a lot of experience with my own condition and how it impacts on me and how it impacted on my ability to carry a baby.

BW

thanks so much BW for replying xx

i have just turned my house upside down trying to find the results of all my bloods, but do you think i can find them lol
i know she tested me for RA cos i was thinking it might be that, but all tests came back fine. the test that came back worrying, i cant remember what it was called, but she said a few people will have low results and live life normal, but because mine was 5, plus the bone aching make's her think i have lupus, god i wish i could remember what it was called!!

the only thing is i dont have the inflammation, well my rings on my fingers get really tight, so maybe i might have a little swelling in my fingers but other then that, i dont have any inflammation. I am just really really sore and can barely move and i get really stiff!! like it hurts to bend or turn.

there is obviously something going on, no doubting that but i just wish i knew what?? my symptoms dont seem to fit with anything that i have googled :( all i know is that my bones are hurting really bad and there at there worst around af :(

the doc doesnt want to give me anything for the pain because she doesnt want me to get to dependant on them!! easy for her to say, when she isnt the one up in pain all night!!
i have been going through alot of nurphen plus latley and because af is due tomorrow i am at my worst tonight :( plus she also doesnt want to treat me for something without knowing for sure that, that is what it is iykwim

thanks again bw for your reply, its definantly made me think that maybe something is linked like you said with my miscarriages?!

xxx

Hi OP :) Sorry to hear this could possibley be your diagnosis.

My sister has Lupus. And it is a VERY annoying condition to diagnose. "yes" blood tests will indicate if you have it. BUT someties that just isn't the case even if the Dr is more than certain Lupus is the cause of the pain. My sister had heaps of the certain test [geez the name escapes me atm] and only once did it come up with her levels being wrong. And that was at a time when she wasn't having a flare [go figure!].

Certain things bring on a flare for her, being run down is one of them. AF could be yours. Best thing to do is find yourself a top notch specialist.

She's had 2 more babies since her diagnosis afew years ago. She goes into 'remission' when she's pregnant, but it comes back 2x after the babes are born.

Good luck. I really hope you get the all clear and it's something that can be treated easily to help you be pain free :)

Hi there
I do have Lupus, was diagnosed at 15.
I'm pretty sure there is a definitive test, but you will need to speak to a rheumatologist.
As the others have said, it is a really vague and hard to diagnose disease. It can affect most systems to varying degrees, or only one or two. My arthritis has kicked up badly in the last few months, but I'm pretty sure that's in part seasonal and partly being run-down (2 littlies will do that ;)). I find scheussler tissue salts (ferr phos) helpful. You can get them in a lot of health food stores and chemists. Might be worth a shot?
You may find the Lupus association website to be helpful with basic information, but if there's anything I can help with please don't hesitate to contact me.

GL, I'll be interested to hear how you go

To look at me, you won't see much inflammation at all. I sometimes have to remove my rings because they become tight, but my hands never really look swollen. Inflammation can be there, but not be obvious - and that's the case with me. Even if I injure myself - with a sprain or something there is little obvious swelling, but the markers in my blood tests go way up. Just because you can't see it doesn't mean it's not there.

I didn't think of it at the time of my first post, but my aunt had a lot of miscarriages and they eventually stopped trying and adopted - but this was 35 years ago! As you can see in the case of littlelara, it is certainly possible to have children with lupus - but it could very definitely be linked with your miscarriages.

The 6-12 month wait to see a specialist sounds a little extreme. Is there a reason it takes so long?

BW

thanks heaps everyone for your replies, it means so much that i can come in here and get it all off my chest, as i have been carrying this around for so long and havent told anyone about whats going on!

BW i am going through the public system, its times like this i wish we had private health insurance!!

My mum has lupus and there are many different ways that the disease can present itself. Her inflamation numbers can be through the roof, but she may not "look" swollen, but her internal organs can be inflamed. Some people get the bone pain (like arthritis pain), some people don't. My mum has a lot of trouble with her blood, she has blood clots a few times, including deep vein thrombosis...and sometimes these blood problems are what can cause miscarriages. My mum was only diagnosed at around 40, but thinks she may have had it since her teen years, she had a lot of trouble with her two pregnancies, although at the time the doctors didn't know why.
I also have a friend who has Lupus and she is at her healthiest when she is pregnant, but flares up after she has given birth.
It's a strange disease that is so different for everyone. I truly hope you don't have it :hug:

See if you can get in to see a rheumy privately. PHI doesn't cover any of my rheumy visits, but medicare does. It seems to really only make a difference if you need to have surgery, which is pretty unlikely with this sort of thing. I still had a wait of around 3 months to get in the first time, but it's better than 6-12! Also ask to be kept informed of cancellations - that may get you in sooner. Seems to me that this isn't something you want to live with for up to another year with no treatment - doesn't look like your GP is going to be much help so you need to get onto that specialist ASAP.

BW

I agree with BW; I see my rheumy privately too and just pay the gap.
See if you can get a recommendation

thanks heaps girls :)

i will go see my gp this week and see if she can refer me to a private one instead!! cos i dont mind paying the gap :)
and honestly right now....i would pay ANYTHING to stop this pain!! i have just finished work, i started at 9am and finished at 6pm, standing all day on checkouts and i am in so much pain :( i can hardly move and after saying i have had no swelling or imflammation, apart from my fingers......well i must of spoken to soon, my feet and ankles are so swollen and my knees are swollen!! my elbows and fingers are sore :( blahhhh i just want it to stop!!! looks like i will be in for a rough night tonight......great!!!

will keep you updated on how i go, and thanks again for all your replies and help xxx

Oh, you poor thing.
Maybe a bath would help? Bath salts, all that. Might be worth a shot. Or I always feel better after a shower