u/stardustinpages

First off, I want to preface by saying that I’m in no way trying to place myself on a higher pedestal or be insulting!

TL;DR: I was diagnosed with moderate ME/CFS on June 8, 2026, but my parents and I (18, ftm, and have not medically transitioned) are questioning the accuracy of this diagnosis, because my POTS symptoms have always seemed mild compared to others & we think I'm "too healthy" to meet the criteria for ME/CFS.

Medical Background:

In late March/early April 2025, I fell ill and was bedridden for a week. I visited my general practitioner, who suggested it was likely a depressive episode. (I was diagnosed with depression and panic attacks in 2021, but had been symptom-free since early 2024.) After that, my health declined: I tired quickly, had a high heart rate, felt dizzy, and frequently experienced presyncope, blood pooling, and more.

I researched POTS, tracked my heart rate and symptoms for months, and was officially diagnosed by my cardiologist in August 2025 after ruling out heart-related, neurological, and psychological issues. We were fairly certain it was POTS because, just in October 2024, I underwent a full health screening with specialists (my parents arrange these every 5–7 years for safety), and I passed everything—including the fitness stress test—with flying colors.

I was lucky to receive a quick diagnosis (six months after symptom onset) and have an amazing medical team supporting me. Since then, I’ve:

• Done acupuncture for my vagus nerve,
• Started taking vitamins tailored for an AFAB body (prioritizing health over coming out/transitioning),
• Perfected pacing,
• Worn compression socks (from August to February, though they no longer fit),
• Increased my daily salt/electrolyte intake,
• Begun taking iron (0.7 ml once daily) a month ago,
• Started 3x daily meditations last week.

Compared to others with POTS, I seem to be doing well, likely because I caught it early, and have been managing/pacing almost from the start.

That’s why I was surprised when the specialist center for Long COVID ( I got an appointment for their POTS program) diagnosed me with moderate ME/CFS after a two-day intake. They also suggested testing for hEDS, but specialists are scarce in Germany, so that’ll take months.

I’ve taken the diagnosis seriously and further reduced my activities. However, this past week, I finally processed the diagnosis of something as scary as ME/CFS and started researching it. Through this, I’ve noticed I don’t experience the restrictions or post-exertional malaise (PEM) described for ME/CFS (imo).

Here’s my average daily life before becoming Ill:

• 6:00 AM: Wake up. Walk dogs for 30 minutes.
• 6:30 AM: Shower, get ready, eat breakfast.
• 7:30 AM: Leave for school by car.
• 8:00 AM – 4:00 PM: School (middle school).
• 4:00 PM: Get home, walk dogs for at least 1 hour.
• 6:00 PM: Eat dinner with family + long talks.
• 7:00 – 10:00 PM: Homework.
• 10:00 – 11:30 PM: Relax (read, write, watch a movie…).
• 11:30 PM – 12:00 AM: Fall asleep.

Weekly activities:

• 2x gym visits
• 1x 20–30-minute jog,
• Weekends: 2–4-hour outings with my dogs.

I did all of this without extreme exhaustion. Just average tiredness, joint pain (which I’ve had lifelong and worsened during puberty), and joint instability (hence the possible hEDS).

My new routine since August: (this routine has improved my POTS symptoms)

• 6:30 AM: Wake up, get ready (no morning shower), eat breakfast.
• 7:30 AM: Leave for school by car.
• 8:00 AM – 1:30 PM: School (German high school has fewer hours than middle school).
• 2:00 PM: Arrive home (after public transport)
• 2:00 – 4:00 PM: Lunch + relax (reading, movies…)
• 4:30 – 5:00 PM: Walk dog
• 5:00 – 6:00 PM: Homework
• 6:00 – 6:30 PM: Dinner
• 7:00 – 9:00 PM: More homework
• 9:00 – 10:00 PM: Prepare for bed (including a seated shower).
• 10:30 PM: Go to bed

Weekly activities:

• I walk the dog 3 days in the afternoon.
• Weekends: Morning + evening dog walks (each 20 – 30 min)
• 1x weekly: Upper-body workout at home ( ~ 20 min)
• 1x every 3–4 weeks: Gym (lower-body workouts, slowly building up). (~ 30 – 40 min)

My heart rate can spike high. For example, during PE at school, it would regularly hit 190–200 bpm. I’d feel tired that day but could still attend school on Friday without feeling drastically worse. By Saturday, I’d return to my baseline. I’ve been written off PE since the ME/CFS diagnosis and have noticed an improvement in my general energy.

Why I’m doubting the diagnosis:

Since developing POTS, I’ve:

• Gotten my driver’s license (car + motorbike),
• Attended my first two house parties (ensuring I sit and leave after a few hours),
• Gone to a concert (without feeling terrible for days afterwards)
• Started socializing more as I’ve made new friends (I’ll meet them 1x month for 3-6 hrs)

After about an hour of walking around (e.g., clothes shopping), my hip and leg joints hurt. If I don’t sit down for a few hours, the pain will last for a few days.

I have days where I push too hard, and my symptoms flare up: more presyncope, weakness, a slightly runny nose, the urge to lie down, and a quicker/higher heart rate spike. Still, when I compare this to descriptions of PEM, I don’t think I have ME/CFS. I regularly exceed my limits (I’m young and sometimes ignore recommendations), and haven’t felt the typical PEM symptoms of excruciating pain, sore throat, fever, etc.

Now, I’m confused as to why they diagnosed me with moderate ME/CFS. Is there something I’m not understanding about the condition? My parents and I think it’s really “just” POTS + (possibly) hEDS.

Being diagnosed with ME/CFS has really messed with my mind. I’ve started worrying about my future and doubting whether I’ll ever come out as trans, because I don’t want to add another stressor and vulnerability to my life.

I’m torn. On the one hand, if I’ve been misdiagnosed with ME/CFS, I want nothing more than to focus on improving my POTS again and working toward the life I had before. But at the same time, I’m afraid. I think the (mis)diagnosis will always be in the back of my mind, like a reminder of what could happen if I don’t pace myself. I’m afraid I’ll always fear that I could end up with severe ME/CFS if I return to a more active lifestyle, even if doctors proved tomorrow that I don’t have it.

Thank you for reading, I’d appreciate any insight/advice!