11/01/2026
EHLERS-DANLOS SYNDROME and LIPEOEDEMA
Something we often notice with lipoedema patients. Some lipoedema patients have Elhers-danlos syndrome, and some are just hypermobile. Either way, its often missed. And should be understood and managed.
"I’m not 'anxious.' I’m medically complex. There is a difference."
Dear Doctor,
When I walk into your office with a binder of symptoms, I know what you see: A "difficult" patient. A hypochondriac.
But I am not trying to be difficult. I am trying to survive in a body that plays by different rules. Here are 5 things the textbooks might have missed about Ehlers-Danlos Syndrome:
1. My "Anxiety" might be Adrenaline. When my heart races and I shake, please don't instantly write a script for SSRIs. Check my Orthostatic Vitals. In EDS, Hyperadrenergic POTS dumps norepinephrine when I stand. It feels like panic, but the trigger is gravity, not emotion.
2. Local Anesthesia fails me. If I flinch during a procedure, I am not being a baby. Research shows EDS patients often have Lidocaine Resistance (due to tissue dispersion or Sodium Channel variance). Please wait 15 minutes instead of 5, or use Articaine.
3. "Stiffness" doesn't rule out EDS. You might say, "You can't be hypermobile; your hamstrings are tight." Please look deeper. My muscles are tight because they are terrified. They are "Guarding"—spasming permanently to hold my loose joints in place. My stiffness is the only thing holding me together.
4. Lying down hides my problems. My pain is dynamic. If you order a CT scan while I’m lying flat, you might miss the Nutcracker Syndrome (vein compression) or CCI (skull sliding) that only happens when I am upright. Gravity is my enemy; please test me where I live—in the upright position.
5. I am the expert on my body. I live in this skin 24/7. When I say a joint is "out," it's out. When I say a medication feels "wrong," it’s likely a mast cell reaction. Please treat me as a partner in my care, not a puzzle you need to debunk.
Signed, The Zebra in Exam Room 3.
👇 What is the #1 thing you wish you could tell your doctor?
Sources:
Schubart, J. R., et al. (2019). "Resistance to local anesthesia in people with Ehlers-Danlos Syndromes." Journal of Dental Anesthesia and Pain Medicine.
Castori, M., et al. (2017). "Ehlers-Danlos Syndrome... from the 'hypermobility' to the 'stiffness' phase."
Grubb, B. P. (2011). "Hyperadrenergic Postural Tachycardia Syndrome."