How long did it take for you to be diagnosed? How were you diagnosed? Tell my your diagnosis stories! It took me almost 12 years to be diagnosed.


Fibromyalgia (FM)

Joint pain

Systemic Lupus Erythematosus (SLE)

Congestive Heart Failure (CHF)

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  • Jamieloup


    Since 2019 I knew I had lupus getting a Dr to back up those opinions it started with heart burn from hell diarrhea then latter in 2020-2021 I had severe leg pain in all my joints red hands they finally did a full blood work bam it showed a marker for lupus I was told by my dr it was lupus and now slowly getting treatment

  • Kaedlyn


    @Jamieloup I also had a blood test marker for lupus and the first rheumatologist I went to told me that didn’t mean anything and she would only diagnose me with fibromyalgia. I cried and cried after that appointment because I thought I’d finally got somewhere and my hopes were dashed within 1 appointment. I later went to another rheumatologist in a different state who said that the previous rheumatologist I had been to sounded like the biggest idiot he’d ever heard of.

  • Im30ButFeel80


    Was the lupus marker test the Ana test anit nuclear blood test? If so mine was positive at a 1:160 titer rate and from what I've read on it titer 1:40 and below are not considered a strong positive bc they have ALOT of false positives at those titers but at 1:160 and above there are very little false positive results like 5% chance of it being a false positive so I don't understand any of it I know I am in some severe pain as well as both knees both shoulders both hips are blood red and hot to the touch with fever in them with any activity what's so ever

  • Kaedlyn


    @Im30butfeel80 first of all I can definitely relate to your username- and to answer your question, the first rheumatologist only showed me the results that said the marker for lupus read ‘high’ and scleroderma also said ‘high’ and RA said ‘moderate’ … she provided no numbers or any other info and just said she thought I only had fibromyalgia. The second rheumatologist I went to tested it during an active flare and it was 1:160. Now I’ve moved back to the previous area with the horrible rheumatologist and idk how I’m going to get them to put it on my chart.

  • Shelbyrose


    @kaedlyn I had 2 rheumatologists tell me I had fibromyalgia and I was so depressed after that bc I felt so alone and couldn’t get someone to listen. It wasn’t until October 2021 when my Ana was tested again and it was significantly higher than before and my symptoms got way worse.

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