Median Arcuate Ligament Syndrome (MALS)

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Median Arcuate Ligament Syndrome (MALS)
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Down every rabbit hole!!

This picture says it all… if you know, you know.

My daughter has been down just about every rabbit hole we could think of.

The recommended diets.
The supplements.
The treatments.
The endless suggestions from well-meaning people.

Every new thing came with hope — maybe this is the answer — only to be followed by disappointment when it didn’t help.

It has been expensive, overwhelming, and emotionally exhausting.

After all the searching, she finally stumbled upon a diagnosis, and with that came some answers at last.

I know so many carers and parents will relate to the cycle of hope and despair that comes with trying everything for someone you love.

Sometimes the hardest part is carrying that hope over and over again, only to watch it fade.

Have you been down similar rabbit holes before finding answers for your loved one?
Please share your experience below — your story might be exactly what someone else in this community needs to hear today.

#MALS
#sibo
#ChronicIllness
#Diets
#elementaldiet
#LaryngopharyngealReflux
#Gastroparesis
#IrritableBowelSyndromeIBS

Most common user reactions 2 reactions
Post
See full photo

Down every rabbit hole!!

This picture says it all… if you know, you know.

My daughter has been down just about every rabbit hole we could think of.

The recommended diets.
The supplements.
The treatments.
The endless suggestions from well-meaning people.

Every new thing came with hope — maybe this is the answer — only to be followed by disappointment when it didn’t help.

It has been expensive, overwhelming, and emotionally exhausting.

After all the searching, she finally stumbled upon a diagnosis, and with that came some answers at last.

I know so many carers and parents will relate to the cycle of hope and despair that comes with trying everything for someone you love.

Sometimes the hardest part is carrying that hope over and over again, only to watch it fade.

Have you been down similar rabbit holes before finding answers for your loved one?
Please share your experience below — your story might be exactly what someone else in this community needs to hear today.

#MALS
#sibo
#ChronicIllness
#Diets
#elementaldiet
#LaryngopharyngealReflux
#Gastroparesis
#IrritableBowelSyndromeIBS

Most common user reactions 2 reactions
Post

Carers Supporting Carers of teen/young adults

My daughter didn’t grow up sick.

One day she was healthy—living her life like any other young person—and then something changed.

And what followed wasn’t clarity… it was a grey area.

A stretch of time where I didn’t fully understand what was happening.
Where I could see she wasn’t okay—but I didn’t yet know how to respond.

And if I’m honest, there were moments where I questioned it.

Not because I didn’t care—
but because I was trying to make sense of something that didn’t make sense.

There were voices around me too:
“Teenagers these days all think something is wrong with them.”
“Maybe she just needs to push through…”

And somewhere in all of that, I found myself stuck between:
She’s clearly struggling…
and
Is she doing everything she can to help herself?

So I did what I thought was right.

I tried to fix it.

I tried to manage her day, suggest solutions, encourage, push gently…
constantly offering advice because I wanted so badly to make her feel better.

Until one day she said something that stopped me in my tracks:

“Mum, I know you mean well, but you’re just reminding me how sh***y my life is.”

And another time:

“I feel like a character in your video game.”

That hit hard.

Because I realised—I wasn’t actually supporting her the way she needed.
I was trying to control something that wasn’t mine to control.

That was my turning point.

I began to understand that this is her journey.

And my role isn’t to fix it.
It’s to be beside her. To support her. To really see her.

What I’ve also come to understand is this:

Chronic illness is layered.

Because behind everything…
they are still young people trying to figure out who they are.

They’re still navigating identity, friendships, independence, and their future—
but without the same energy, freedom, or certainty.

And as mothers, we’re holding all of it.

The illness.
The emotions.
The uncertainty.
And the grief of what we thought life might look like.

This space is for mothers like me.

Mothers who:

• Didn’t get it perfect from the start

• Have questioned, doubted, and learned along the way

• Are trying to shift from fixing to supporting

• Are carrying more than most people realise

You don’t have to filter yourself here.

You can be honest about:

• The guilt
• The frustration
• The love
• The exhaustion

This is a space where we support each other—not by having all the answers,
but by understanding what this really feels like.

If you feel comfortable, introduce yourself.
Where you’re at in your journey, and what you need right now.

You’re not alone in this ❤️ XOXO

#CarersSupportingCarers
#ChronicIllness
#MALS
#POTS
#AutonomicDysfunction
#CHS
#ADHDInGirls
#adhdyoungadults
#Anxiety
#Depression
#MoodDisorders
#Bipolar2

(edited)
Most common user reactions 6 reactions
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Carers Supporting Carers of teen/young adults

My daughter didn’t grow up sick.

One day she was healthy—living her life like any other young person—and then something changed.

And what followed wasn’t clarity… it was a grey area.

A stretch of time where I didn’t fully understand what was happening.
Where I could see she wasn’t okay—but I didn’t yet know how to respond.

And if I’m honest, there were moments where I questioned it.

Not because I didn’t care—
but because I was trying to make sense of something that didn’t make sense.

There were voices around me too:
“Teenagers these days all think something is wrong with them.”
“Maybe she just needs to push through…”

And somewhere in all of that, I found myself stuck between:
She’s clearly struggling…
and
Is she doing everything she can to help herself?

So I did what I thought was right.

I tried to fix it.

I tried to manage her day, suggest solutions, encourage, push gently…
constantly offering advice because I wanted so badly to make her feel better.

Until one day she said something that stopped me in my tracks:

“Mum, I know you mean well, but you’re just reminding me how sh***y my life is.”

And another time:

“I feel like a character in your video game.”

That hit hard.

Because I realised—I wasn’t actually supporting her the way she needed.
I was trying to control something that wasn’t mine to control.

That was my turning point.

I began to understand that this is her journey.

And my role isn’t to fix it.
It’s to be beside her. To support her. To really see her.

What I’ve also come to understand is this:

Chronic illness is layered.

Because behind everything…
they are still young people trying to figure out who they are.

They’re still navigating identity, friendships, independence, and their future—
but without the same energy, freedom, or certainty.

And as mothers, we’re holding all of it.

The illness.
The emotions.
The uncertainty.
And the grief of what we thought life might look like.

This space is for mothers like me.

Mothers who:

• Didn’t get it perfect from the start

• Have questioned, doubted, and learned along the way

• Are trying to shift from fixing to supporting

• Are carrying more than most people realise

You don’t have to filter yourself here.

You can be honest about:

• The guilt
• The frustration
• The love
• The exhaustion

This is a space where we support each other—not by having all the answers,
but by understanding what this really feels like.

If you feel comfortable, introduce yourself.
Where you’re at in your journey, and what you need right now.

You’re not alone in this ❤️ XOXO

#CarersSupportingCarers
#ChronicIllness
#MALS
#POTS
#AutonomicDysfunction
#CHS
#ADHDInGirls
#adhdyoungadults
#Anxiety
#Depression
#MoodDisorders
#Bipolar2

(edited)
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I’m new here!

Hi everyone! My name is KenG. I’m looking to connect with others who have MALS syndrome and women who are in remission from estrogen-positive breast cancer. I’ve been in remission for 4 years and would love to hear your stories and connect. 💛
#MightyTogether #Cancer

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i had my first ct angio scan 3 days ago and it was incredibly painful. my joint pain and nausea that i usually have are unbearable even days later. has anyone else had this reaction? i’m not sure if it’s a reaction to the contrast or just my body deciding to flare up because of the pain #EDS #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction #Gastroparesis #MedianArcuateLigamentSyndrome

(edited)
1 comment
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I’m new here!

Hi, my name is Carolyn. I'm undiagnosed and we are trying to get the FDA to recognize fluoroquinolone toxicity. I have neropathy, IBSD, severed tendons, and my body attacks itself. I have had a hip replacement, hysterectomy, thyroidectmoy and am getting my appendix out next week and pretty sure they will find MALS when the do 4 lapascoptic incisions during the appendix surgery. . I have had the same drs from Beth Isreal since they found the T cell Lymphocytes. probably 6 yrs.. they know its all from 3 pills of levaquin. yet it has taken yrs for them to listen about the pain in my stomach.. I want to yell at all of them. stop Gas lightning me this is real.. I have proved it over and over again.. I am only 56. this has been my life since I was 36. before that I was healthy active and happy.. Thank you for listening to my rant.. I am scared.. what if they find something worse than MALS. what if they find nothing. this pain is real. my muscles flip and contract you can see and feel the bulge like a baby kicking. feels like I am being stabbed and you can feel it flip back..

#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #RheumatoidArthritis #PTSD

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I'm new here!

Hi, my name is wvgirl3. I'm here because I have PTSD, my daughter has MALS and I treat people all the time who don't have a diagnosis - but they're being medicated and having surgery that doesn't seem to work. I want to find ways to treat people so that they get well, not get worse.
#MightyTogether

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How are you doing with your #MALS #MedianArcuateLigamentSyndrome this year?

How are you feeling? How do you handle the ups and downs of rare disease like #MALS #MedianArcuateLigamentSyndrome ? Did you have surgery yet? Regardless, this is all here for support and 2024 I’m aiming to get better control of my health. Let’s support each other ♥️ #SafeSpace

Most common user reactions 1 reaction
Post

How are you doing with your #MALS #MedianArcuateLigamentSyndrome this year?

How are you feeling? How do you handle the ups and downs of rare disease like #MALS #MedianArcuateLigamentSyndrome ? Did you have surgery yet? Regardless, this is all here for support and 2024 I’m aiming to get better control of my health. Let’s support each other ♥️ #SafeSpace

Most common user reactions 1 reaction