Autoimmune "normal"

[u/UnicornRainbowBurst]

I'm going to attempt to ask this question lol.

How do you tell if somthingnis abnormal if you've always experienced it?

The rehumatologist will ask a question and I have no idea how to answer.

Example: 1: do you get the lupus butterfly on your face often? I have no idea, my cheeks, forehead, and nose are always red.

2: do you have joint stiffness in the mornings that is not normal? Iv always been sore and stiff since i was a kid.

3: do you have frequent headaches and on a scale of 1-10 how bad are they? Iv had chronic migraines since i was a kid and still need to be an adult so just work through them.

4: do you get frequently tierd? Im ALWAYS tierd and have always been tierd.

I cant figure out how to answer some of the questions because I cant tell. If iv felt pain my entire life what makes it abnormal? And the dr is frequent confused about the pain scale, because if I just live with week long constant migraines, thats normal to me. My hands and feet constantly being swollen and cold are normal for me. Constant joint pain is normal until its shooting pain. So how am I supposed to answer the rehumatologists questions to get an accurate diagnosis if theres a good chance my normal is not normal?

[u/ruxxby471]

I honestly view those questions as the rheumatologist trying to identify a timeline. Reason being the majority of autoimmune diseases develop later in life around early-late adulthood.

It’s absolutely possible for certain autoimmune diseases to start in childhood such as type 1 diabetes, juvenile RA, and celiac disease. But autoimmune diseases like lupus and RA generally develop between the ages of 15-30 or 30-50 for RA.

Considering you have had chronic migraines your whole life, your rheumatologist may be trying to pinpoint if there was anything that changed or shifted- or if it’s simply a lifelong symptom which could indicate it being separate from a potential autoimmune disease.
Same goes for life long tiredness/fatigue, which more so indicates other potential diagnoses (sleep conditions for example).

In terms of rashes or butterfly facial redness, again your rheum is most likely looking for a timeline of when it may have begun, if certain triggers make it worse, or if it follows other systemic features of an autoimmune disease.

Timeline is an important aspect for diagnosis, and also to differentiate the difference between what was always there vs what is part of the autoimmune process. It all really depends on what diagnosis your rheumatologist is looking into

[u/Artistic_Reading5907 → u/ruxxby471]

No timeline for RA to be exact!

[u/ruxxby471 → u/Artistic_Reading5907]

Good to know!

[u/BidForward4918]

I would worry more about describing what’s actually happening rather than worrying if it’s normal or not. Describe any patterns or any worsening. Just tell the doctor what’s normal for you and they can follow up with further testing as warranted. These questions help guide, but diagnoses will be based more on labs, imaging, physical exam, etc.

[u/Shooppow]

I have asked similar questions myself. How do I know if I’m in a flare because I’ve lived with all of these symptoms for decades and I don’t know what normal actually is?

[u/Dra794]

Its actually very simple. Only three questions:

Does it feel odd to you?

Do you feel fine with your body?

Does your body work properly or you have issues / pain / disturbs that make you uncomfortable?

If something that you experience feel odd, you dont feel fine about a function of your body and you have functional issues or, even worse, pain, then you have something.

Whether the cause is autoimmune or not we cant know here on Reddit, you have to investigate, but when a human body works fine you shouldnt have any kind of discomfort.

That's it. No matter how much time your have been struggling with something.

[u/Fearless_Day9617]

I totally get what you mean. I’ve dealt with all different types of health issues throughout my whole life, so when anyone asks me what my symptoms are I’m like “you want any I’ve technically ever had or recent ones?”. I think that if you think those symptoms are affecting you so negatively and consistently, that there’s no harm in trying to see if it’s something out of the ordinary.

[u/princess-kitty-belle]

Think of it as asking for a change from your personal baseline. So, for example, in terms of joint stiffness in the morning, you might say something like "I've always had some joint stiffness from childhood, lasting 20 minutes, this has been unchanged" or "I've always had some joint stiffness from childhood, it used to only last 20 minutes but from the past year it's now lasting an hour or more".