Why Are Car Rides So Painful with hEDS? Tips That Actually Help

Why are car rides so painful with hEDS?

Car rides are so painful with hEDS because the constant micro-movements (speeding up, slowing down, bumps, turns, and even subtle vibrations) require your body to stabilize itself, leading to fatigue and soreness. If you have MCAS, vibrations may also trigger mast cell symptoms.

Generally, hypermobile bodies don't tolerate sitting in one position for long periods. Standard car seats aren't designed to support joints that move beyond their normal range, which can leave your hips, knees, lower back, and neck working much harder than they should.

POTS can also play a role. Remaining upright for extended periods may contribute to blood pooling, headaches, dizziness, nausea, and increased fatigue.

From Dr. Kollampare: People with hypermobile Ehlers-Danlos syndrome often rely on their muscles, not just their ligaments, for stability. During a car ride, those muscles are constantly making tiny adjustments to keep your joints aligned. Even though it may look like you're "just sitting," your body is working continuously, which is why long drives can be surprisingly exhausting.

Practical tips before the drive

• Where possible, plan your trip so you can take your time and avoid long stretches without a break.

• Consider any braces, compression garments, or supportive clothing that help your body feel more stable.

• Pack electrolytes, plenty of water, and high-protein snacks.

• Bring sunglasses. Squinting for long periods can contribute to neck tension and headaches.

• If you're traveling with someone else, communicate your needs ahead of time so everyone knows you'll likely need breaks or position changes.

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Dr. Kollampare recommends: If you know you'll be in the car for several hours, don't hesitate to use lumbar supports, neck pillows, or rolled towels to improve your positioning. Small adjustments can reduce strain on your joints and muscles over the course of a long trip.

During the drive

• Change positions as often as you safely can, even if it's only a small adjustment.

• If possible, stop every hour or two to get out, walk around, and gently stretch.

• Continue sipping water throughout the trip rather than waiting until you feel thirsty.

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From Dr. Kollampare: Regular movement breaks aren't just about comfort. Standing and walking for a few minutes encourages circulation, helps reduce stiffness, and can be especially beneficial for patients who also have POTS or dysautonomia.

Thank you to the patient who shared this perspective. The Living Radiantly Patient Perspectives series exists to give voice to the real experiences of people living with rheumatic, autoimmune, and chronic illnesses. If you have a story, insight, challenge, or triumph you'd like to share, we welcome your contribution. Together, we can help others feel seen, understood, and less alone throughout Clermont, Florida, and the surrounding communities.