For those madly curious about my illnesses, here are a few (brief) descriptions. Please keep in mind, I’ve only written about how the trifecta^ of EDS, MCAS, and POTS affect me personally. Others may experience symptoms differently. Feel free to message me if you have questions, or comment if you feel comfortable. I’m always open and willing to talk about health related schtuff.
Ehlers-Danlos Syndrome (EDS):
- EDS is a connective tissue disorder.
- All my tissue, including skin/ ligaments/ muscles/ veins/ organs, sag, tear, bruise, and struggle support my frame.
- I am a human Gumby. It may sound fun, but I can assure you it’s not all it’s cracked up to be.
- My body’s collagen, building block proteins, have large holes in them.
- The sagging and hyper-mobility put a lot of stress on each of my bodily systems and causes numerous idiopathic (spin-off) conditions from things not working the way they should.
- Example: Chronic headaches, irritable bowel syndrome (IBS), hypersomnia/ narcolepsy.
- I get injured easily, have a lot of muscle knots, can dislocate suddenly, and am generally clumsy.
- Example: My knee was 2 mm from being amputated from a dislocation. Yes, it’s true. It caused major damage. However, I was extremely lucky to have been referred to a wonderful surgeon that reconstructed things as best he could. Unfortunately for me, he’s moved on to bigger and better things–working on professional hockey players!
Mast Cell Activation Syndrome (MCAS):
- My body’s mast cells are hyperactive.
- Mast cells appear all over the body and are quite a new discovery.
- They produce heparin, a natural blood thinner, histamine, and several other vital molecules.
- My body thinks I’m having an allergic reaction to nearly everything I ingest/ breathe/ touch (you get the idea).
- It causes aches/ inflammation/ itching/ burning/ brain fog/ temperature intolerance/ malaise.
- I’m slowly trying to identify events, environmental factors, and specific chemical compounds that trigger these reactions in an effort to calm them down.
- Until then, taking antihistamines and other allergy medications, multiple times per day, and avoiding histamine inducing activity/ foods is my best bet.
- Example: Avoiding high heat/ bitter cold/ exercise/ stress/ pain/ being tired/ infections/ insect bites/ highly ferment-able foods (grapes, cabbage).
Postural Orthostatic Tachycardia Syndrome (POTS):
- My veins and blood vessels have a hard time fighting gravity so my blood rushes to my feet when I change positions quickly, move suddenly, or stand in place for too long.
- My head lacks blood supply (a.k.a. oxygen) so I get dizzy and my blood pressure drops.
- I also experience a large increase in heart rate as my heart works extra hard to try and get blood back up.
- I get really hot, shaky, and need to rest often.
- Some may think I’m lazy but POTS causes blackouts if I’m not careful.
- Example: Vacuuming and dusting the house become daunting tasks which require breaks to rest and cool down.
- I try to maintain a high sodium diet to retain more fluid.
- Retaining fluid helps to increase blood volume and, ideally, lessens the ill effects from downward draining.
- I also take a low dose beta-blocker to lower my heart rate, eat before getting too hungry, and get rest.
- Being tired and hungry are sure ways to increase yucky symptoms.
Many thanks for taking the time to learn a little more about me! If you are silently suffering, please know you’re not alone.
^They’re referred to as the trifecta because those of us with EDS also seem to suffer from POTS and MCAS. There are budding theories but concrete answers as to why.
For more information and other resources relating to my conditions, please visit the Links & Resources page.
Thanks for stopping! ~Ellen