Trailcraft on Thin Ice: Hiking with Lupus, RA, POTS & Intracranial Hypertension

Between the Fire, the Fog, and the Pressure

Some days, my joints feel like they’ve been welded shut.
Other days, I stand up and the world goes sideways.
Then there are days the pressure builds behind my eyes before I’ve even left the trailhead.

Living with Lupus, RA, POTS, and Intracranial Hypertension isn’t just about pacing. It’s about risk management. Real-time decisions in wild environments, inside a body that can crash in five different ways, all at once.

And no, it’s not a coincidence that these conditions show up together.

When your immune system turns on your joints (RA), your organs (Lupus), or your blood vessels and nerves (POTS, IH), you’re not collecting random diagnoses. You’re living in a system where regulation itself has been compromised.

This is called polyautoimmunity... It's when immune dysfunction spreads across systems over time. It’s common, it’s often misdiagnosed, and it’s exhausting.

Add in nervous system dysfunction (like POTS) or cerebrospinal pressure instability (like IH), and what you’re really managing is a multi-system collapse in slow motion with inflammation, dysregulation, and instability overlapping in unpredictable ways.

This guide isn’t about pushing through.
It’s about protecting your future self while still reclaiming the trails that call you home.

1. Systemic Interplay: What You’re Managing

🔥 Lupus + RA (Autoimmune / Inflammatory)

• Joint pain and instability
• Sun-triggered flares and fatigue
• Medication timing, immune sensitivity
• Energy unpredictability and pain spikes

🌀 POTS (Dysautonomia)

• Orthostatic intolerance (dizziness, tachycardia, fainting)
• Heat intolerance and sweat dysfunction
• Energy crashes after mild exertion
• High fluid and sodium needs

🧠 Intracranial Hypertension (IH)

• Increased cranial pressure (not a headache)
• Triggered by exertion, heat, or elevation
• Risks: vision changes, nausea, collapse
• Often worsened by dehydration or poor sleep

Together, these create a moving target:

• Flare risk from heat or sun
• Positional instability from standing or climbing
• Joint collapse from fatigue
• Internal pressure spikes from exertion or weather shifts

You’re not imagining how complex it is.
It’s just that the world rarely builds trails for bodies like ours.

2. Pre-Trail Strategy: Prepare Like You're Protecting a System

Route Planning

• Choose flat, shaded loops with rest points
• Avoid elevation gain - even moderate inclines matter with IH
• Check weather, air quality, pollen count, and UV index

Gear

• Cooling neck towel, UPF sun protection, light compression layers
• Trekking poles for stability and joint offload
• Folding stool or ground pad for frequent breaks
• Electrolyte/salt hydration mix, extra water
• Joint braces or wraps as needed
• Med kit: antihistamines, pain relief, rescue meds if prescribed

Timing

• Go early or during golden hour (never mid-day sun)
• Pre-load hydration and sodium if POTS is flaring
• Rest the day before if RA or IH pressure has been rising

3. On-Trail Adaptations: Know Your Body's Warning Signs

Use a rotation model:

• Walk 10 minutes, rest 5
• Sit and elevate legs if dizzy or if pressure spikes
• Constantly scan for shade, rest points, and safe exit routes

Visual Symptoms to Respect Immediately:

• Blurred or darkened vision (IH)
• Nausea or heat shimmer (POTS/IH)
• Joint “heat” or swelling in motion (RA/Lupus)
• Sudden exhaustion or trembling (combo flare)

Remind yourself: turning back early = successful trailcraft.

4. Post-Trail Protocol: Recovery is Part of the Hike

• Salt + water immediately after
• No flat-lying if IH pressure is elevated
• 30° head elevation rest position
• Ice or cool packs to neck, joints, or skull base
• 24–48 hour recovery window = normal, not excessive
• Zero guilt for needing the downtime

5. What’s at Stake

This isn’t about “taking it easy.”
It’s about preventing:

• Permanent joint damage (RA)
• Organ stress or neurological inflammation (Lupus)
• Vision or neuro issues (IH)
• System-wide crashes (POTS)

Choosing the trail is an act of courage.
Coming back safe is the act of self-respect.

🧠 Sidebar: How Intracranial Hypertension Changes the Game

Intracranial Hypertension isn’t a headache. It’s internal pressure that builds up inside your skull. That pressure can compress your optic nerves, affect your balance, and make even mild exertion dangerous.

It’s invisible, but it’s real.

• Any uphill trail, prolonged standing, or overheating can raise your risk
• Rest with head elevation
• Watch for visual changes
• Never ignore nausea or head throbbing

✅ Ready to Hike Again - On Your Terms

Reclaiming trails with polyautoimmunity isn’t about chasing mileage.
It’s about walking in relationship with your body, your limits, and the land.

You don’t need to prove anything.
You just need to come home to yourself - safely.

 Safety Note

This my individual, personal experience, not medical or therapy advice. If something spikes pain or panic, stop. Stabilization beats bravado. Work with a practitioner who respects your pace.

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