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What Was Your Health Like Pre-diagnosis?

A myRAteam Member asked a question 💭
Bronxville, NY

Prior to getting your diagnosis, did you guys have vague random symptoms that felt like something was off? Or did it hit all at once?

For me, I got mono really bad when I was 12, and then ever since then, I was just sick all the time with sinus infections and colds and just caught every germ I came into contact with. And I always needed a lot of sleep. And then I got shingles too which is an immune-system related thing.

It’s like from 12 (when I got mono) until just a few years ago (about 25 -… read more

August 2, 2020
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Answer Summary

Members shared deeply personal stories about experiencing vague health struggles for years before their RA diagnosis, with many describing... Read more

Members shared deeply personal stories about experiencing vague health struggles for years before their RA diagnosis, with many describing patterns of frequent infections, sinus issues, migraines, and general immune system weakness that began in childhood or after illnesses like mono, scarlet fever, or other viruses. Several members discussed the potential connection between Epstein-Barr virus and autoimmune disease, noting that certain people may have genetic predispositions that get 'switched on' by infections, and many observed that autoimmune diseases run in their families on the maternal side. A recurring theme was the frustration of not knowing whether RA had been present all along in different forms, the highly individualized nature of how RA manifests and progresses in each person, and the communal reassurance that overthinking these connections is a natural part of seeking answers and understanding one's own health journey.

A myRAteam Member

https://ghr.nlm.nih.gov/condition/rheumatoid-ar.... Interesting info

August 5, 2020
A myRAteam Member

That helps, Angela! I had some “joint stuff” growing up but we always thought it was because I have lax joints so I have hypermobility in quite a few joints. Not sure of the connection between hypermobility & RA but maybe there is one!

Interesting to hear that sinus infections and migraines are commom in RA patients. So maybe it’s all connected...I hope so because than it’s maybe ONE cause and not MANY causes.

August 2, 2020
A myRAteam Member

Oh yes! Kmgiuliano I have found that many of us have migraine headache either now or earlier. I started having them as a child. I used to look forward to seeing my cousins and playing with them at family functions but I always ended up in bed in a dark room. My mom would give me aspirin and put me to bed. By 10 I had ridges in my nails and felt ashamed of my nails and hands. I was better during my teen years but the migraines came back around 18. Worse than before. In my childhood I couldn’t play sports because I couldn’t run like the other kids did. I didn’t understand why but I couldn’t keep up with the other kids. After 18 I just kept getting worse. My hands hurt so bad and was curving. Finally I was diagnosed only because I went to a hand clinic on my own. One look at me and they sent me to a Rheumatologist. My moms best friend told her she thought I had Arthritis when I was 11. My mom just blew it off. I was finally told by my doctor at 26 but he didn’t know what kind. I’ve had so many sinus infections in my life. So you aren’t alone they’re common to in this group. I hope that helps. I’m adding you to my team! 🤗❤️

August 2, 2020
A myRAteam Member

@A myRAteam Member yeah it seems so individualized which makes it all the more complicated to diagnose and treat! It would be cool if it was like...this one medicine works for EVERYONE...but then it wouldn’t be real life ha

August 2, 2020
A myRAteam Member

My personal opinion is that RA manifests itself in different ways in people. some get it suddenly, some it develops gradually.... not everyone has the same symptoms or same damage, not everyone is RA positive...I think RA is name given to a broad range of symptoms involving bone erosions. Who is to say what the instagating factor was...maybe in some it was a bad case of flu, mono, a serious infection, a traumatic event, ...if no one knows...who is to say that there could not be multiple random causes. I would not discount anyones story.

August 2, 2020 (edited)

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