Share Your Story

Community is about sharing, supporting each other, and having a voice. This is where you can be heard in an open forum on topics that are important to you. You’ll find hope, insight, answers, and the awareness that if you are suffering from lupus, you are not alone. We invite you to share your own story and take part in the discussion.

Join in. We’re listening.

The U.S. Department of Health and Human Services’ Office on Women’s Health hosts this discussion forum for registered users to discuss lupus and lupus-related issues. This is a moderated online space. Please treat each other with respect. We will not post comments that violate the Terms of Use for this website. Please also review our Privacy Policy.

The information posted by individuals on www.couldihavelupus.gov represents personal experiences and is not meant to provide medical diagnosis or advice, or to take the place of health care or services you may need. Please see your primary health care provider about any personal health concerns. Please refer to our Disclaimer and Linking Policy regarding user-posted content and links.

The discussion forum is currently unavailable to post new discussions or comments. Please check back soon.

Painful joints By Mary 06/06/2012 11:06:56

I tested positive for ANA antibodies, pattern speckled. One test was positive for lyme but further testing I was positive for one band #23. HLA came out positive....[more]

Read more
1
Frustrated By Regina T. 05/20/2012 04:05:09

I am a medical professional who was told by a neurologist to get tested for Lupus because I had a butterfly rash across the cheeks of my face. ANA test came back negative. 4 years later I get scabs in my hair and my hair fall out....[more]

Read more
2
Career By Just a Little Lupie 05/16/2012 05:05:45

I am new to sharing any stories about Lupus. I was diagnosed with SLE and Fibromyalgia 3 years ago. Since my diagnosis I have noticed that my co-workers even after me explaining what Lupus is I have been told that "You should just leave, w...[more]

Read more
3
Confused By Micah 05/08/2012 03:05:58

I have had odd symptoms for the past 2 years now, weird tingling sensations, mental fog, joint pain and extreme muscle spasms, random onslaughts of diarrhea, pain behind my left eye, numbness in my extremities, general malaise and fatigue,a...[more]

Read more
5
Scared By Jean Henry 05/07/2012 06:05:30

My daughter, who is 14, has been presenting with symptoms that are making me think of Lupus. She already had damaged kidneys from a birth defect that was corrected when she was 2, but before it got corrected her two kidneys were damaged gi...[more]

Read more
2
Hereditary By Zy 05/04/2012 12:05:47

I know this site said only 10% have a family member with lupus. Well my Maternal Grandmother has Lupus, as well as two of my maternal aunts. My mother has not been diagnosed, and neither have I....[more]

Read more
1
do i have lupue By claudette strong.. 05/02/2012 09:05:23

i went to the doctor and she gave me a blood test and it said i have lupus...i been having bad..bad back pain my feet swell up all the time ..i have pains in my head.i have dry eyes feels like sand is in them..my neck hurts at times i have ...[more]

Read more
4
fibromyalgia or lupus By LESLIE DEPHILIPPIS 04/28/2012 06:04:55

It's been a difficult road with fibromyalgia and I've been wondering lately if it might be lupus that I suffer with. I really would like to know for sure because I need to treat myself for the right disorder. For ten years I've l...[more]

Read more
1
First case scenario? By Confused&Curious 04/27/2012 11:04:30

I went to urgent care last night because I have had some strange symptoms recently. I was absolutely shocked that the first thing out of the doctor's mouth was a suspicion of Lupus.

A couple weeks ago, I developed redness in the white...[more]

Read more
4
Chronic low-grade fever - lupus? By Hope1965 04/27/2012 09:04:14

Hi! I have been having problems with low-grade fevers for the last few years, mostly between 99.4 and 100.6. When I was a teenager, I was diagnosed as having a false "SLE" cell....[more]

Read more
1

I just turned 24 and finally got a blood test. I have had the symptoms half of my life but this past month was unbearable. I grew up through high school with teachers yelling at me for walking to slow between classes....[more]

Read more
1
Lupus symptoms?? By Sandy 04/20/2012 01:04:29

I first heard of Lupus when pregnant with my first of three children because my ANA was "borderline" high at the time. My OB wasn't too concerned after seeing no other signs. Then in my 30's I had high ANA levels with my 2nd and 3rd...[more]

Read more
7
Demanding Good Service and Care By malinda washington 04/19/2012 06:04:39

It is hard to find good and prompt service in some of these doctor's office. I think we need to demand answers, great services, and prompt responses to our concerns and needs. We are paying for these services and they are not at a redu...[more]

Read more
2
Symptoms of lupus my doc is stuck on By Kathleen Engel 04/14/2012 12:04:25

I was Dx with Lupus in the 1980's I have been told by my doctors I have seen all this time that I have it I have frequent remissions, and less exaserbations.( We have moved several times and this last doctor said he lost my chart. I went...[more]

Read more
3
Good Rheumatologist? By Susan 04/12/2012 11:04:23

I had a seizure last week while I was home alone with my two year old. Many of my tests point to lupus. Butterfly rash (which I have been told is roseacea but nothing helps) and elevated ANA and joint and muscle pain.......[more]

Read more
2
Me i guess By Sadie May 04/12/2012 07:04:35

I'm 13 going to be 14 in July i have many of the symptoms And my moms doctor says i need to be tested my mom has had lupus sense i was 4 and has been in and out of the hospital for many years until she got her kidney transplant... Some d...[more]

Read more
4
What do we have in common? By Jamie 04/11/2012 01:04:06

I took birth control for ten years. I wonder how many of us have and if there is a connection to Lupus and Fibromyalgea.

I have been sick for years and nobody knows why....[more]

Read more
2
Lupus By Karen Hale 04/10/2012 05:04:13

I have been struggling for 16years with the symptoms of Lupus.

I have insisted that medications make me much worse but doctors saw me as obstructive if I didn't take prescribed drugs.

It has taken much research on my part and I have ...[more]

Read more
2
I dont know what to think! By Meghan 04/04/2012 07:04:34

I am 17 years old and have a blood clotting disorder. I have chronic head aches all the time and i have the worst pains in my joints. Mainly my knees and fingers....[more]

Read more
4
getting a proper diagnosis By alissa 04/03/2012 11:04:57

I have gone to Mt. Sinai health center clinic in New york for over a year now . I have told them all of my symptoms and I have been basically sent home and scared to death....[more]

Read more
3