Survival of the Fatigued

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Survival of the Fatigued Supporting moderate to severe ME/CFS warriors with real talk. No recovery hype—just coping tips!

Article:Their complaints are often ignored or brushed aside, but fibromyalgia sufferers see some hope in a recent court ...
26/12/2025

Article:

Their complaints are often ignored or brushed aside, but fibromyalgia sufferers see some hope in a recent court ruling that Social Security Administration officials were wrong to discount an Anne Arundel County woman’s description of the suffering the condition caused her.

Crystal Hultz was first denied Social Security disability benefits back in 2014. Throughout her many attempts to challenge the decision, administrative law judges believed her subjective testimony was not properly supported by medical evidence.

But in a Dec. 15 opinion, a three-judge panel of the 4th U.S. Circuit Court of Appeals ruled that in cases where there are no objective medical tests or markers to identify debilitating conditions, like fibromyalgia, subjective testimony must have more weight.

“This case is about crediting a patient’s accounts of the chronic, debilitating, and little-understood illness fibromyalgia,” Circuit Judge Roger L. Gregory wrote in the opinion.

“Fibromyalgia is a serious and mysterious condition, disproportionately affecting women, that our current science is incapable of observing through objective medical testing. Accordingly, we must give due weight to Ms. Hultz’s subjective testimony about the severity of her symptoms,” Gregory wrote.

He said the administrative law judges and lower courts that supported the initial denial were wrong to disregard her struggle with fibromyalgia, reversed the denial and sent the case back for administrators to calculate Hultz’s benefits.

Jeffrey R. Scholnick, the attorney representing Hultz, said she cried on the phone when he called her last week about the ruling.

I called her on Monday and said, ‘Congratulations, people believe you now,’” he said in a recent interview.

Scholnick said the ruling will help other people get disability benefits when they are struggling with debilitating conditions that cannot be detected through definitive medical tests.

“It’s the nature of this disease (fibromyalgia). Because people don’t see it, they don’t believe you,” he said.

Hultz is one of about 4 million people in the United States who struggle with fibromyalgia, a condition that causes pain all over the body, and can lead to fatigue as well as emotional and mental distress, according to the U.S. Centers for Disease Control and Prevention. Diagnosing fibromyalgia largely relies on a patient’s subjective description of symptoms, as there are no medical tests that can objectively confirm the condition.

Hultz’s symptoms began in 2013, severely limiting her ability to work. She applied for disability the next year.

According to court documents, fibromyalgia and lupus interfered with her ability to do daily tasks, such as “opening jars, handwriting, turning keys, preparing meals, performing heavy household chores, accomplishing yard work, and carrying heavier objects with the hand that suffered from pain and numbness.”

After appealing the initial denial in 2014, what followed was a series of court hearings, denials and appeals spanning over a decade.

Throughout the process, administrative law judges disregarded fibromyalgia as a feature of her disability. One judge omitted the condition entirely when denying her benefit, and one physician consulted for Hultz’s case believed she had a “component of ‘malingering.’”

Lynne Kennedy Matallana, CEO and founder of the National Fibromyalgia Association, said that people in Hultz’s situation often get “lost in the system” and can give up trying to seek out disability benefits.

“We still have situations where the diagnosis of fibromyalgia and the understanding of it continues to be debated,” she said. “Those of us dealing with it are initially in such horrible straits, because we went from living very happy lives and being able to take care of families and things to all of a sudden having an illness.

“There are those people, like this woman, that get lost in the system and never get the help that they need,” Matallana said.

Fibromyalgia is a serious and mysterious condition, disproportionately affecting women, that our current science is incapable of observing through objective medical testing. Accordingly, we must give due weight to Ms. Hultz’s subjective testimony about the severity of her symptoms.

– U.S. 4th Circuit Judge Roger L. Gregory

Meanwhile, other physicians working with Hultz, along with family members, testified that her fibromyalgia led to days of fatigue and pain that often left her bedridden.

Her luck began to change in 2020, when Gregory ruled in a similar case, Arakas v. Commissioner, affirming that Social Security officials must take subjective testimony into account for conditions that do not have a tangible test or medical marker to identify them.

Gregory wrote in Hultz’s case that the court “must be guided by our precedent in Arakas v. Commissioner, which held that ALJs (administrative law judges) may not rely on objective medical evidence even as just one of multiple factors to discount a claimant’s subjective complaints regarding symptoms of fibromyalgia.”

Judge G. Steven Agee agreed with the majority that the administrative law judges in Hultz’s case should have put more weight on her subjective testimony. But in a partial dissent, he said he believed the court went too far in its remedy.

“Rather than simply vacate the ALJ’s decision and remand for reconsideration of Hultz’s claim, it went a step further, opting to outright reverse the ALJ’s decision and deem Hultz entitled to disability benefits in the first instance,” Agee wrote. “In doing so, it departed from the process courts typically employ when an ALJ errs.”

Matallana says it’s important for people with fibromyalgia and other disabilities to push through court challenges to receive benefits.

“I do recommend that people find an attorney who will represent them,” she said. “When you’re sick, you don’t know how to get up the energy and the strength to fight something like this.”

Link: https:// marylandmatters .org/ 2025/12/24/federal-court-says-social-security-cant-dismiss-complaints-of-fibromyalgia-sufferers/

Hmmm… No wonder the ADHD meds help and make me feel less stressed..! 😮It’s interesting how many issues i have that keep ...
24/12/2025

Hmmm… No wonder the ADHD meds help and make me feel less stressed..! 😮
It’s interesting how many issues i have that keep turning out to be linked to mitochondrial dysfunction! 😬

I really really really hope this is real!!!
21/12/2025

I really really really hope this is real!!!

For years, doctors blamed hormones. Turns out, bacteria might be the real cause.
Researchers found Fusobacterium directly linked to endometriosis lesions. A course of antibiotics significantly reduced both the growths and the pain.
No surgery. Just pills. Millions of women could finally have relief.
Shared for informational purposes only.
Source: Nagoya University / Science Translational Medicine

The best part of the MECFS episode of the Godlen Girls! I couldnt include this part in my video on the episodes because ...
11/12/2025

The best part of the MECFS episode of the Godlen Girls! I couldnt include this part in my video on the episodes because of copyright, but im glad to be able to share it here! 😁

Lol - oddly necessary. 😏
18/11/2025

Lol - oddly necessary. 😏

Do it.
Maybe add some electrolytes.

Ohh- and the pain of remembering when we COULD quickly do things! Le sigh… 😔
18/11/2025

Ohh- and the pain of remembering when we COULD quickly do things! Le sigh… 😔

🔷💠 Why People with Chronic Illness(es) Can’t “Just Quickly” Do Things 💠🔷

Explaining why “just quickly” doing something isn’t possible for people with chronic illnesses is like trying to explain gravity to someone living on the moon.

What looks like “just popping to the shop,” “just swinging by for tea,” or “just making a quick dinner” can feel like preparing for a full-scale expedition with no guarantee of making it home.

For many of us, “quickly” doesn’t exist anymore.

We’re not antisocial. We’re not unreliable. We’re not being dramatic. We’re living in bodies that operate on entirely different rules.

🔷 The Myth of “Quick”:
For healthy people, getting up, throwing on a coat, and leaving the house might take five minutes. For someone with a chronic illness, even getting to the “coat” part can be a monumental task.

There is no spontaneous dash to the shops when your body requires a logistics plan just to stand up.

🔷 Energy Is a Precious, Finite Resource:
For people with conditions like ME, POTS, long COVID, autoimmune diseases, EDS, MCAS, dysautonomia, and more, energy isn’t something you can just “muster up.”

We don’t wake up with a full tank. Some of us wake up already running on fumes.

Even the smallest outing can drain what little energy we have for the entire day—or longer. “A quick cuppa” can mean a full-body crash hours later.

🔷 Symptom Fluctuations:
Our ability to do things isn’t consistent.
We may make it to the shop on Monday, but be unable to sit upright on Tuesday. There’s no way to predict which version of our body we’ll get each day.

This is why committing to anything—especially last-minute plans—is complicated, not careless.

🔷 Physical Barriers Others Don’t See:
For many, “quick” tasks aren’t quick—they’re physically punishing:
🔹 Standing in line can cause tachycardia, dizziness, or fainting.
🔹 Sitting in a café can mean battling sensory overload, pain, or nausea.
🔹 Walking a few steps can feel like running a marathon.
🔹 A short drive might leave us too weak to get out of the car.
🔹Being exposed to air fresheners, perfumes, cigarette smoke, pesticides and cleaning supplies can trigger long lasting mast cell reactions.

What looks like “just popping out” can mean hours, days, weeks or even months of recovery—if recovery comes at all.

🔷 Cognitive Dysfunction:
“Brain fog” makes even basic steps confusing:
🔹 Remembering where your keys are.
🔹 Planning the route.
🔹 Following conversations at tea.

A casual meet-up can feel like an exam you didn’t study for—draining and overwhelming.

🔷 No Simple Recovery Time:
Healthy people can rest after an outing. Chronically ill people may not bounce back "quickly".

What you call “a quick visit” might cost us the next few days, weeks or months of functioning.

🔷 Emotional Weight & Social Pressure:
Society treats spontaneity as a marker of connection. When we can’t just “pop over,” we’re seen as distant, flaky, or uninterested.

But behind every “I can’t” is a silent calculation of symptoms, pain, risk, and energy. We feel the guilt, too. We want to say yes. Our bodies say no.

🔷 We Are Not Flaky Friends:
This isn’t about disinterest, laziness, or lack of willpower. It’s about survival.

💠 We’re not unreliable.
💠 We’re not antisocial.
💠 We’re navigating a body that doesn’t cooperate.
💠 We want to do more than our bodies allow.

Sometimes we have to cancel. Sometimes we need weeks to prepare for a single outing. Sometimes “maybe” is the best we can offer.

🔷 To Friends, Family & Society:
If someone with chronic illness says they can’t “just” do something "quickly"—believe them. Offer flexibility, patience, and understanding. An invitation without pressure is a gift.

Our worth isn’t measured by how many plans we can keep. Our value isn’t in how fast we can move. Our strength is in surviving a life that requires careful pacing just to exist.

💬 Comment: What "quick" task(s) do you struggle with?

💙👉 If posts like this resonate, follow Chronically Rising.

©️ All rights reserved by Chronically Rising.

Interesting.. But hey- at this point i will take any chance, no matter how slim!
11/11/2025

Interesting.. But hey- at this point i will take any chance, no matter how slim!

Not a recommendation:

"News Release 10-Nov-2025: Link found between chronic fatigue and abnormal breathing could lead to new treatments"
https://www.eurekalert.org/news-releases/1103994

Hyperventilation was proposed previously but I believe there is no randomised controlled trial evidence of breathing exercises helping

🚨▶️Link to watch this video: https://youtu.be/7d_cTfHQQMAGet ready to roll with joy! In this fun reaction video, I'm div...
30/10/2025

🚨▶️Link to watch this video: https://youtu.be/7d_cTfHQQMA

Get ready to roll with joy! In this fun reaction video, I'm diving into the most epic TikTok mobility aid scooter cosplays and custom wheelchair costumes designed by the ME/CFS and chronic illness community! 🧑‍🦽‍➡️🧑‍🦼‍➡️
From a Dalek-inspired wheelchair takeover, to a Star Wars futuristic scooter vibe, these creative adaptations turn everyday mobility aids into show-stopping Halloween (or any-day) fun! Proving that chronic fatigue syndrome doesn't dim our sparkle!✨

Whether you're living with ME/CFS, managing chronic illness, or just love inclusive cosplay ideas, these wheelchair costume hacks and scooter decorations are pure inspiration. 🤩
Watch as I geek out over DIY mobility aid transformations that celebrate disability creativity, boost confidence, and make chronic illness life a little more magical! Perfect for ME/CFS warriors seeking fun ways to adapt and thrive!💪💜
If you're part of the chronic fatigue syndrome community, or know someone with mobility challenges, hit play for laughs, empowerment, and costume ideas that'll have you saying "OMG!" 😍

👉 What’s your dream wheelchair cosplay? Drop it in the comments! I read them all!
👉👉 LIKE if these made you smile, SUBSCRIBE for more ME/CFS-friendly content on chronic illness hacks, awareness, coping, and positivity-- And turn on notifications so you never miss an update (as YouTube has us unfairly shadow-banned)!!



Get ready to roll with joy! In this hilarious reaction video, I'm diving into the most epic TikTok mobility aid scooter cosplays and custom wheelchair costum...

And you all wonder why I keep promoting the humming vagus nerve exercise. 😏
22/10/2025

And you all wonder why I keep promoting the humming vagus nerve exercise. 😏

Studies have shown that humming can dramatically boost nitric oxide production in the body, with some research suggesting levels can rise by as much as 1,400% in just 10 seconds. Nitric oxide is a vital signaling molecule that helps relax blood vessels, improving circulation and regulating blood pressure. It’s naturally produced in the brain by neurons, glial cells, and the endothelial cells that line blood vessels.

When you hum, the vibrations create oscillating airflow in your nasal passages. This improves gas exchange between the paranasal sinuses, which generate nitric oxide, and the nasal cavity, allowing more of this beneficial gas to circulate through the body.

The result is a number of health benefits. Higher nitric oxide levels help widen blood vessels, improve oxygen delivery, lower blood pressure, and enhance nutrient transport throughout the body. Regular humming can therefore support heart health, boost physical performance and recovery, sharpen mental function, and strengthen the immune system. It’s a simple, natural practice with surprisingly powerful physiological effects.

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