MCAS can be confusing because symptoms often affect multiple systems and fluctuate.
Possible symptoms include:
• Flushing, hives, itching
• GI upset
• Brain fog or headaches
• Rapid heart rate
Triggers may include heat, stress, medications, foods, or pressure.
#MCAS#hEDS
Many women with POTS stop attending events because they fear a crash
Try planned pacing instead:
Before:
• Hydrate + salt
• Eat a balanced meal
• Wear compression
During:
• Alternate sitting/standing
• Avoid overheating
• Take breaks when symptoms spike
#POTS#hEDS
Going to a concert with POTS is possible—it just takes planning.
Try:
• Hydrate and increase sodium earlier in the day
• Wear compression
• Bring a stool if allowed
• Sit between sets
• Use braces for joint stability
• Tell friends what you need
#POTS#Dysautonomia#hEDS
Exercise with POTS can fail when you start upright too soon
Running, HIIT, or long walks may trigger 😵💫, tachycardia, & crashes
Structured protocols like CHOP emphasize
• Recumbent cardio first
• Gradual progression
•⬆️time before intensity
• Upright exercise later
#POTS#EDS
Exercise with POTS can feel intimidating
Protocols like CHOP, Dallas, and Levine use gradual reconditioning
• Start with recumbent exercise
• Progress slowly
• Build lower body strength
• Increase upright activity over time
The goal isn't intensity. It's consistency.
#POTS
If you have POTS, hydration is only part of the equation.
Salt helps your body retain fluid, and together they can support blood volume and reduce symptoms.
It's not just about drinking more water—it's about finding the right balance of fluids and sodium.
#POTS#Dysautonomia
Living with POTS often follows a cycle
Feel better → Overdo it → Crash → Recover
Daily strategies that can help
• Pace yourself
• Eat smaller meals
• Limit heat exposure
• Build strength gradually
Small changes can make a big difference over time
#POTS#Dysautonomia#EDS
Managing POTS isn't just about flare days.
Small daily habits often make the biggest difference:
• Hydrate consistently
• Get enough sodium
• Wear compression
• Transition slowly in the morning
Stability is built through consistency, not perfection.
#POTS#Dysautonomia#EDS
Does compression feel uncomfortable?
You're not alone. Many people with POTS and EDS also have sensory sensitivities
Try:
• Start with 1–2 hours
• Wear during higher-activity times
• Pair with fluids and salt
Compression is one tool—not the whole plan
#POTS#Dysautonomia#EDS
Compression garments can help POTS—but the type matters.
Many people try knee-high socks and don't notice much improvement
For some, thigh-high, waist-high, or abdominal compression provides better support by reducing blood pooling and improving circulation
#POTS#Dysautonomia
Many women with EDS leave appointments feeling unheard.
A common reason? Trying to cover too much at once.
Before your visit:
• Define one goal
• Bring 3–4 key points
• Ask about next steps if time allows
Focused conversations often lead to better outcomes.
#EDS#hEDS#POTS
EDS care can be hard.
Don't try to cover every symptom in one appointment.
Pick one goal:
• Diagnosis
• Treatment
• Referral
• Follow-up
Focused visits often lead to clearer conversations.
#EDS#Hypermobility#Advocacy
A common story in POTS:
"I thought I had anxiety for years"
Clues it may be POTS:
• Symptoms improve lying down
• Heat makes it worse
• Salt and fluids help
• Fatigue is common
Sometimes it's not anxiety—it's autonomic dysfunction.
#POTS#Dysautonomia
Have you been told it's anxiety, but something feels off?
POTS can mimic anxiety:
• Rapid heart rate
• Dizziness
• Shakiness
But POTS is often triggered by standing, heat, or dehydration
Maybe it's not anxiety
Maybe it's autonomic dysfunction
#POTS#Dysautonomia
Tried multiple electrolyte brands and still feel dizzy, fatigued, or tachycardic?
Hydration is only one piece of the POTS puzzle
Symptoms may persist due to
• Inconsistent intake
• Not enough sodium
• Heat, illness, or stress
• MCAS, deconditioning or instability
#POTS#EDS
Have you tried electrolyte drinks for POTS and felt no difference?
The problem may not be electrolytes—it may be the sodium content.
Many hydration mixes contain only a few hundred milligrams of sodium, which may not be enough to significantly support blood volume.
#POTS#EDS
Do your POTS symptoms fluctuate so much you wonder what's normal?
POTS is dynamic. Symptoms can change based on hydration, sleep, hormones, pain, stress, and MCAS flares
A flare doesn't mean you're getting worse. Often, it's your body responding to increased stress
#POTS#hEDS
POTS symptoms getting worse?
More dizziness, fatigue, heart rate spikes, or exercise intolerance doesn't always mean your condition is progressing.
A flare is often a signal that your body needs extra support—not a new baseline.
#POTS#Dysautonomia#hEDS#Hypermobility
"Your labs are normal"
Many people with EDS and hypermobility hear this despite dealing with pain, fatigue, dizziness, GI issues, and brain fog.
Joint instability, autonomic dysfunction, etc don't appear on routine bloodwork
Normal labs don't mean nothing is wrong
#EDS#hEDS
You feel unstable.
You have pain.
But your MRI is "normal."
Hypermobility is often a functional problem, not a structural one. Joint instability, muscle compensation, and nerve irritation don't appear on static imaging.
Normal scans don't mean normal function.
#EDS#hEDS