Chronic Illness Survival Guide & Things That Have Helped My MALS

There is a lot you can do to manage your symptoms and comfort level even if you have a condition like MALS. That's why I say that taking care of myself is a full time job; I spend all day managing my symptoms and comfort, and although it's a great deal of effort, it gets me a long way. I'm still here and still living my life, after all- and I've been shocked by how many people don't know even the basics, like things you can do when you have a cold.

Is this a thing?

What about this?

* Listen to your body
* Symptom tracking / mindfulness every day , building familiarity
* Learn when to ask for help, when to ask for med changes, when to advocate for yourself & when to go to the ER
* Have an advocate or someone who knows your emergency plans

MALS Tips

MALS is a rare vascular disorder that mimics a gastro condition. MALS occurs when the median arcuate ligmaent (a band of tissue located in the chest area) is far too low, pressing on and constricting the major arteries that supply blood to the gastrointestinal system. Because MALS is considered rare and is poorly researched and understood, there is little in the way of care and treatment regimens. I've had a good deal of luck managing my MALS with cannabis over the years, as well as a handful of other things. I am documenting my results here for science. This is not medical advice, YMMV. This is merely what has worked for my own unique pathology.

My own arteries display stenosis of over 70% on my celiac doppler ultrasounds. I also got told by both technicians that my arteries were very easy to image and they were thrilled about it. They may be squished but they're gorgeous. Be jealous.

Some of my notable symptoms include:

beep
boop
nausea, vomiting
Panic attacks accompanying food
Severe headache and fatigue following ingestion
Painful spasms in the gut and chest

Notable Research

MALS linked to POTS, EDS, endometriosis
??

Postural Orthostatic Tachycardia Syndrome (POTS)

POTS is an issue with the autonomic nervous system and circulation; specifically, how the posture of the body changes blood pressure. I really love this description from the Liquid IV website:

"Imagine your body as a pinball machine. Tilt the “machine” down (by standing up), and all the “pinballs” (the blood) will fall to the bottom of the machine (your legs). In those without POTS, the nervous system is able to redistribute blood appropriately to the upper body, acting as the pinball machine’s flippers which can propel pinballs to the top of the machine (getting the blood to the upper body). In those with POTS, the “flippers” are malfunctioning, and blood is not able to be propelled upward. Instead, blood pools at the lower half of the body, leaving the upper half without proper blood flow. The lack of blood flow to the heart and head leads to dizziness or unconsciousness."

POTS causes fainting, fatigue, issues with body temperature regulation, brain fog, and chronic pain among other symptoms, and it worsens my MALS symptoms as well. It's hard for me to stand for any period of time, especially in warm temperatures (if I stay in the shower too long, I pass out). POTS is the reason why I drink so much water- sometimes up to a gallon per day- and why I spend so much time reclining or lying down. When all else fails, lying down on the ground can help prevent fainting spells.

Notable Stuff

POTS + testosterone HRT
Jessica?

Mental Health Notes

I'm not going to get into an itemized list of everything that is wrong with me, just the conditions I want to draw awareness to. But being neurodivergent surely has also contributed to my diffiuclty keeping a job.

How it Affects Me

Naturally every body and every pathology are different, and interact in different ways. Some people are disabled my MALS much sooner than me, on feeding tubes in their teens, while I seem to have bought myself some time. Yet other people with POTS live much more active lives and are able to work, while some are totally disabled. And I have been told I'm an "atypical case" to boot, though that remains to be seen.

I used to be fairly active as a teenager, but once I started college & working much more, my body deteriorated rather quickly.