Chat Now!   Member Gallery    Member Articles    Games   Member Groups   Member Blogs   Health News  Bored?

Author Topic: Lupus  (Read 453 times)

0 Members and 1 Guest are viewing this topic.

Offline hoov22

  • Full Member
  • ***
  • Posts: 100
  • Rec's: 0
  • Gender: Female
    • Poke This Member
Lupus
« on: April 16, 2014, 07:54:41 AM »
hi there. I have never known much about nor been worried about having lupus, however due to a recent chain of events I have just been tested for it. I am now completely terrified that my blood tests will now show I have lupus. I am almost too frightened to google anything about it because from what I have seen re symptoms, I think I may actually have it. Is anyone else terrified of Lupus or know much about it? I should find out tomorrow but I am pretty convinced I have it as I have headaches, achy hands and my wrist is very sore (but I thought I had just injured it as it is only sore when it is used in a certain way, it doesn't ache) and a bad knee (same as my wrist), very tired, skin rash on knuckles and on face(although we think this is rosacea)and I just feel off. I am trying to work out if the achy hands have come on due to having been tested for lupus (had the wrist problem but never noticed the aching until recently so am wondering if my worry has brought this on). Can anxiety bring on achy joints like my hands and feet? I'm so worried....please don't let it be lupus!!
Bookmark and Share

Offline marc

  • Community Greeter
  • Hero Member
  • *****
  • Posts: 7462
  • Country: us
  • Rec's: 64
  • Gender: Male
  • Mood: Confused
    Confused
    • Poke This Member
Re: Lupus
« Reply #1 on: April 16, 2014, 08:04:21 AM »
Anxiety can cause malaise and general body discomfort such as general aches and pains.
Bookmark and Share
If you're going through hell, keep going.
Never, Never, Never, give up.

Offline sparx

  • Jr. Member
  • **
  • Posts: 88
  • Rec's: 1
  • Gender: Female
    • Poke This Member
Re: Lupus
« Reply #2 on: April 16, 2014, 08:26:37 AM »
Yes.  Anxiety can cause aches and pains.  Think of it like a car.... your anxiety is like putting bad gas into the engine.  As a result of this, other parts of the car are going to show symptoms - stalling, sputtering, and so forth. 
Bookmark and Share

Offline ColdHands

  • Sr. Member
  • ****
  • Posts: 370
  • Country: us
  • Rec's: 6
  • Gender: Female
  • Mood: Relaxed
    Relaxed
    • Poke This Member
Re: Lupus
« Reply #3 on: April 16, 2014, 09:22:11 AM »
I am ANA positive, but have not been diagnosed with Lupus.  I go to a Rheumy in June. 
There are 11 criteria for lupus and if you have 4 or more of them, you are considered to have lupus.  Its not an easy diagnosis to chase down.

I don't recommend googling, but you have to have the 4.  If you are ANA positive and only have a couple you could be considered pre-Lupus, but may never get it.  However, Lupus symptoms are the same as a lot of other things.

I have the face rash too, but I too think mine is roseacea since I get the acne with mine too.  I also have some joint stiffness, but not enough to have arthritis.  I don't have protein in my urine either, though I have had at times, I don't most of the time. 

Is your blood test for ANA?  What else did they test?
Bookmark and Share
"There is just one more thing that bothers me."  Columbo

Offline hoov22

  • Full Member
  • ***
  • Posts: 100
  • Rec's: 0
  • Gender: Female
    • Poke This Member
Re: Lupus
« Reply #4 on: April 23, 2014, 02:47:23 AM »
Hi there
Hi ColdHands
Yes, my blood test was for ANA and it has come back positive...although I understand that quite often a false positive may occur? Or am I just hoping that?? I have since had blood taken for further tests today, including my kidney function and other more specific tests...do you know what they might be? I feel quite calm at the moment...but am nervous deep down. I really had a feeling it would be positive...although I don't feel as if I have 4 symptoms...although 1 now is a positive ANA I guess. yes I have a sore wrist but it feels more like an injury than what I imagine the joint pain associated with lupus should be. It doesn't ache, it is only painful in certain positions and the mornings don't bring joint stiffness for me anywhere...well rarely...I should never say never as I'm an ex-athlete so my body isn't what it used to be! I am tired and have headaches but this could be my neck as the headaches have gone since I had some physio on Saturday...and the fatigue could be 2 small children waking me up at night!! Then there is the face rash, but it is around my nose towards my lip, not in the typical lupus spot and is clearing up now using elidel. I have an appointment next Thursday with the doctor to go through my results....am really hoping nothing comes back that is too nasty. Oh...one thing the Dr said was the test that outlines the way my blood clots that shows a red flag to any kind of arthritis in the body came back normal, so that surely is good??? Any comments?? thank you :)
Bookmark and Share

Offline greend

  • Hero Member
  • *****
  • Posts: 916
  • Country: ca
  • Rec's: 8
  • Gender: Female
  • Mood: Okay
    Okay
  • Personal text
    • Poke This Member
Re: Lupus
« Reply #5 on: April 23, 2014, 08:47:11 AM »
I am presently being tested for some autoimmune diseases myself. I get surging feelings in my chest and a prickly feeling in the skin of my legs. I know how disconcerting all this testing can be. Your symptoms seem quite vague and can be attributed to many benign issues - two young kids being two of them.

Let us know how it goes.
Bookmark and Share

Offline ColdHands

  • Sr. Member
  • ****
  • Posts: 370
  • Country: us
  • Rec's: 6
  • Gender: Female
  • Mood: Relaxed
    Relaxed
    • Poke This Member
Re: Lupus
« Reply #6 on: April 23, 2014, 10:46:00 AM »
Hoov,

Yes ANA can be variable and come and go.  Your rash doesn't seem to be the "butterfly" rash associated with Lupus, but I haven't looked at you.  Mine is kind of butterfly in appearance but I get the acne which doesn't seem to be part of lupus and it goes away with normal acne treatment. 

Lupus and autoimmune fatigue is pretty debilitating for some people, but for others it isn't.  Autoimmune is so variable by person that there is no way to say, you will feel like X and Y will happen.    I have Primary Biliary Cirrhosis, an autoimmune liver disease and there are days I just have to take a nap I can't go any further, but I am usually refreshed by sleep for a bit.  Anxiety can cause unbelievable fatigue.  I've been so sleepy I can't keep my eyes open due to worrying about something.  Add in children and you could have that too.

Don't go to Lupus websites, even the Lupus foundation site.  You would think the site dedicated to the disease would be easier to read, but the title says "The cruelest of diseases"  Really?  don't say that to people!  I know lupus can be hard on some and not so hard on others, but I've seen far crueler diseases. 

I've heard people who have tested ANA positive, then don't anymore.  So yes there can be false positives and you also you can have it then not.  What was your titer?  Mine was 1:640
Bookmark and Share
"There is just one more thing that bothers me."  Columbo

Offline hoov22

  • Full Member
  • ***
  • Posts: 100
  • Rec's: 0
  • Gender: Female
    • Poke This Member
Re: Lupus
« Reply #7 on: April 23, 2014, 08:12:59 PM »
I actually have no idea what the titer was...or is for that matter! Is that the ANA result??? I will ask for my results to be emailed to me...the doctor just went through them. thanks for the advice re lupus websites. I have done very little googling and none since the positive ANA result but the googling I have done was much more alarming than the discussion that I had with the doctor. The Dr seemed to think lupus can be very well managed now and although uncomfortable for people who have the bad arthritis, kidney function can be managed and life expectancy and quality of life should be no different. Maybe people who are diagnosed later in life have milder cases? one thing I didn't think to mention to anyone including the Dr was the bussing, twitching, vibrations etc...that i have had throughout my body for years and for the past 7 months, shaking of my left index finger at times. I have always attributed all of this to anxiety, so much so I just live with the buzzing and twitching and vibrations (and sometimes feelings of weakness, predominantly on my left side) and don't get too worked up about them. The index finger is starting to bother me but it is the same hand as my wrist problem so maybe it is due to overuse or injury (I was thinking it was due to lifting children and having broken it in 2006 playing basketball) However I am wondering if this is something neurological associated with lupus? I feel like it is getting worse, but there are also times when it doesn't shake at all and the vibration feeling isn't there...if it was lupus or something else, I guess it could come and go? I don't even know if Lupus could cause this. I am starting to avoid using my hand and in true anxiety style, I keep checking my left leg and left arm for weakness and shaking...and as is always the case, right now, I don't feel that anxious!!! I also have numbness in the very tip of each big toe(only a tiny spot...in the same spot in each toe and it's not completely numb...but fairly numb)...similarly, I haven't mentioned this to anyone coz I thought it was probably due to aging after playing so much high level sport in my life. anyway...will try to ignore everything and see if it settles down while I wait for some answers next week....it's the wait that is the worst!! Thanks for all of your responses...it is so much better to get info on here than for me to google!!!
Bookmark and Share

Offline greend

  • Hero Member
  • *****
  • Posts: 916
  • Country: ca
  • Rec's: 8
  • Gender: Female
  • Mood: Okay
    Okay
  • Personal text
    • Poke This Member
Re: Lupus
« Reply #8 on: April 24, 2014, 08:06:02 AM »
I just wanted to mention that my grandmother had lupus and lived a very normal life until the ripe old age of 87. I never even noticed she was ill to tell you the truth.
Bookmark and Share

Offline ColdHands

  • Sr. Member
  • ****
  • Posts: 370
  • Country: us
  • Rec's: 6
  • Gender: Female
  • Mood: Relaxed
    Relaxed
    • Poke This Member
Re: Lupus
« Reply #9 on: April 24, 2014, 09:31:18 AM »
Titer is the concentration of the ANA in your blood.  The lower the number, the less of it you have.

I have been told that mine could be from my PBC, but could be something else too, so they rheumy is supposed to rule that out in June.

Lupus effects everyone differently.  Some people have a rough time, some don't.  But it is a manageable disease these days.  I think getting diagnosis is half the battle so you can treat it.  I think people died of it more in the past because they didn't get diagnosed until they had organ damage.  Now with blood work being so common people find out sooner.

As far as the neurological involvement, I think you are too early on in things for that to be lupus, even if you have it.
Bookmark and Share
"There is just one more thing that bothers me."  Columbo

Online Stressed Jumper

  • Sr. Member
  • ****
  • Posts: 304
  • Country: us
  • Rec's: 10
  • Gender: Female
  • Personal text
    • Poke This Member
Re: Lupus
« Reply #10 on: April 24, 2014, 01:00:53 PM »
My cousin has lupus and it is well managed.  Except for taking a few meds she has a perfectly normal life.  I doubt you have lupus but even if you do it is not a death sentence.  Hang in there!
Bookmark and Share

Offline leah2013

  • Sr. Member
  • ****
  • Posts: 349
  • Country: us
  • Rec's: 3
  • Gender: Female
  • Mood: Worried
    Worried
  • Personal text
    • Poke This Member
Re: Lupus
« Reply #11 on: April 24, 2014, 10:08:27 PM »
Hi sorry about the ANA positive. Did your family doctor tested you for it?
I am kind of the same boat. I have headaches and recently developed wrist pain (about 2 weeks ago). I am also borderline anemic and my WBC went down a bit. I am very scared about lupus. I brought my concerns to my doctor last week and she said she wasn't thinking of lupus. My chiropractor doesn't think so either. But I am so scared they are missing it. I should probably get the test done. Good luck to you!
Bookmark and Share
Going thru a rough patch! Praying for peace of mind and happiness!!!!

Offline hoov22

  • Full Member
  • ***
  • Posts: 100
  • Rec's: 0
  • Gender: Female
    • Poke This Member
Re: Lupus
« Reply #12 on: May 01, 2014, 12:39:06 AM »
Hi there

Well, my next set of tests (specific lupus, kidney function and a variety of others) all came back normal, so it is great news. I also got my titer result Coldhands - 1:160 so very low as the lowest is the next one down apparently, 1:80. So.....I now have to keep a symptom diary (every little symptoms as they all add up apparently seeing this is hard to diagnose)and get tested in 6 months time for my ANA again. If it stays the same or lower then I do nothing, if it rises then I need to have the other tests done again and see a rheumy. It could be the very early stages of something....or a complete anomaly and nothing! My Dr isn't too worried. I am however still very tired, have back and side pain and stomach pain (all very mild) and the headaches are coming back again from my neck...but I guess we all know that could be anxiety. I'm going to go back to see a psych in the next two weeks to get back on top of things. I tell ya what, it's not easy having health anxiety and be asked  to keep a list of all of your symptoms....I hope having to do this doesn't make my HA worse!! x
Bookmark and Share

Offline leah2013

  • Sr. Member
  • ****
  • Posts: 349
  • Country: us
  • Rec's: 3
  • Gender: Female
  • Mood: Worried
    Worried
  • Personal text
    • Poke This Member
Re: Lupus
« Reply #13 on: May 01, 2014, 07:54:29 AM »
Hey girl you made my day!!!!! Congrats on the negative results I am beyond happy for you!!!!
Bookmark and Share
Going thru a rough patch! Praying for peace of mind and happiness!!!!

Offline ColdHands

  • Sr. Member
  • ****
  • Posts: 370
  • Country: us
  • Rec's: 6
  • Gender: Female
  • Mood: Relaxed
    Relaxed
    • Poke This Member
Re: Lupus
« Reply #14 on: May 01, 2014, 10:15:36 AM »
Glad your tests were normal!  My titre is 1:640, so plenty high, but my AMA titer (the one for my autoimmune liver disease) is 1:160.  So I am hoping that is a good sign for me.

:)

Bookmark and Share
"There is just one more thing that bothers me."  Columbo

Tags:
 

Related Topics

  Subject / Started by Replies Last post
4 Replies
1499 Views
Last post March 14, 2007, 08:53:20 PM
by Meatball Jones
15 Replies
2088 Views
Last post May 30, 2010, 02:27:55 PM
by shade
4 Replies
684 Views
Last post July 26, 2010, 02:41:38 PM
by wvgurl
1 Replies
279 Views
Last post July 05, 2012, 10:50:12 AM
by spitfireatme
2 Replies
502 Views
Last post July 05, 2012, 04:02:23 PM
by Xocnagem