What were your very first signs of lupus?

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Evanescent Eden
Regular Member


Date Joined Feb 2014
Total Posts : 132
   Posted 2/23/2014 4:45 PM (GMT -6)   
Hi again. I'm SURE that this has been discussed before on here- and I'm very sorry if so. But those of you who are up to it- can you tell me, what were your very first signs of lupus?

I'm in limbo here...for those of you who don't know...I've had Fibromyalgia since I was 19 or 20 (I'm 26 now), but as of a year or two, I've had severe autoimmune disease signs/ symptoms (doctors agreed, but I currently have no health insurance to get a full work-up-- I'm working on it)!

Your answers may really help me out.

Thank you so much! I hope everyone is doing well.

Eden :-)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/23/2014 10:37 PM (GMT -6)   
I kept getting petecia on my legs and rashes on my arms.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Evanescent Eden
Regular Member


Date Joined Feb 2014
Total Posts : 132
   Posted 2/24/2014 3:11 AM (GMT -6)   
Thanks once again, couchtater! Very helpful for me. I do NOT get those symptoms. Although I know everyone's body is certainly different...

Did you get them from being in the sun? Or just randomly?

Eden :-)

scort
New Member


Date Joined Feb 2014
Total Posts : 2
   Posted 2/24/2014 6:48 PM (GMT -6)   
well, I first got a false positive result for syphilis when I was 10 or 11 which is an almost definite diagnosis but the first actual disease related symptoms that I got was discoid lupus of the skin which later led to the confirmed diagnosis of systemic lupus erythematosus with anti cardio Lipan syndrome also known as anti-phospholipid syndrome which got diagnosed when I had pulmonary embolisms when I was 20 or so.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/24/2014 7:59 PM (GMT -6)   
I believe it's from the sunshine. I'm very photosensitive.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 2/24/2014 9:27 PM (GMT -6)   
My first symptoms? Fatigue & exhaustion, unrelenting. Could sleep 22 hours in a day and still be exhausted. Nothing else had changed in my life!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 2/24/2014 10:08 PM (GMT -6)   
Mild anemia and low platelets but no clinical symptoms for 15 years. Then gout like symptoms which progressed rapidly to edema in feet/ankles then lower legs, then upper body. Lupus was attacking my kidneys. Fatigue, lots of pain in swollen areas and also attacked all my joints. I was a bundle of pain and my docs had already figured out I had lupus before labs confirmed it.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Evanescent Eden
Regular Member


Date Joined Feb 2014
Total Posts : 132
   Posted 2/25/2014 2:05 AM (GMT -6)   
Thanks for responding again, couchtater!!

Thank you SO much guys for all of the replies!! It's really helping me better understand some things.

It's interesting how different everyone is, huh!

Scort,
I did NOT know about the false positive for syphilis thing! Interesting! I'm so sorry that you, too, have been sick since you were young. I started having health problems/ severe chronic pain when I was 19... sometime after a mental breakdown from my bipolar disorder. I can relate to being sick at a young age. But the pulmonary embolisms definitely sound worse shakehead How are you doing these days? Better I hope!

Lynnwood, I can relate to that. I'm DX with fibro though, but the fatigue and exhaustion has completely impacted my life. It has gotten worse lately ever since my joints, eyes and kidneys bother me immensely again. It all seems to happen at once.

Bsime, nice to meet you! Sorry for your journey... the edema sounds awful! I don't know what causes my kidney damage, but I too have chronic kidney problems.. That is one of the reasons` I was advised to maybe talk to lupus people (also because my joint problems get so severe, I sometimes need a wheelchair just to get around a grocery store)!

I have a lot of things to figure out once I get insurance back. I live with severe gastrointestinal issues too which are worsening-- I believe that is the first thing that should be checked out!

Nice to meet everybody. I hope you don't mind if I have anymore Q's.

Eden :-)

GabbyChick
Regular Member


Date Joined Jan 2014
Total Posts : 27
   Posted 2/28/2014 6:46 PM (GMT -6)   
Hi Eden!

Very interesting post!

WILL RESPONDERS STATE HOW OLD THEY WERE TOO?

I was 4 years old.

I would wake with extreme weakness in my hands. I couldn't make a fist. I would try and try. I would rub them too!(Hey first physio) I thought everyone needed to "wait" for hands to "wake up too".

Melaine

GabbyChick
Regular Member


Date Joined Jan 2014
Total Posts : 27
   Posted 2/28/2014 7:00 PM (GMT -6)   
Hi Eden,

I just want to comment on your insurance situation. I can't believe that the Wonderful USA, one of the richest countries won't/ doesn't/ can't ... provide free medical care for everyone! & it boggles the mind how very expensive even simple treatment can be.

I am in Canada, it is a huge relief that I don't have to pay anything for medical care. THis is extended to all area's of medicine.

I wish I could lend you my health card and off you go any tests, specialist, surgery or procedure .... FREE!

All the best, I hope this works out for you!

Melaine

Evanescent Eden
Regular Member


Date Joined Feb 2014
Total Posts : 132
   Posted 3/4/2014 9:53 PM (GMT -6)   
Thanks, Gabby!!! I wish you could too! Hehe :-)

I had medical assistance years ago because of getting pregnant. They gave it to me for the baby. Once I found out I had gestational trophoblastic disease and the pregnancy was not going to work out, I had to have surgery for it. That was the end of that shakehead BUT the state took my insurance away due to not having a baby! Even though my doc thought I had MS and wrote a long letter to them practically begging them to not take the insurance away-- saying that I needed it very badly for my own health. The people at the welfare office lied to me for 3 months saying that I'd get it back after it lapsed. They ended up never giving it back to me.

And I've been suffering ever since. Even worse, the severe neurological symptoms have also remained. This country is BS with it's healthcare system. They tend to not help their own people (people born and raised here); I have no teaching hospitals around me, no money to move as of now (we will as soon as we can-- for medical marijuana, etc.), clinics have stigmatized me like crazy and Obamacare is too much for me monthly b/c I make no money right now (I get fired a lot from jobs b/c of my health).

But I need to go back down to the welfare office and demand them to find a state insurance program for me again due to my medical (and mental health) needs, etc.

Eden :-)
DX: Fibro, IBS, GERD, Daily headache, Migraine, Severe allergies, Bladder diverticulum, Mild kidney damage, Recurrent infections, Sinusitis. Bipolar Disorder, Borderline Personality, OCD / Dermatillomania. In the past: Gestational Trophoblastic Disease. + Undiagnosed issues; searching for the answers.

"You can't be brave if you've only had wonderful things happen to you" Mary Tyler Moore
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