Showing posts with label Personal stories. Show all posts
Showing posts with label Personal stories. Show all posts

Thursday

Rheumatoid Arthritis and Iron Deficiency: What a New Genetic Study Means for You

Rheumatoid Arthritis and Iron Deficiency

If you live with rheumatoid arthritis (RA), you already know it affects far more than just your joints. It’s a whole-body condition — and fatigue is one of the most common, difficult symptoms to live with. But what if some of that deep exhaustion isn’t just from RA itself?

A new genetic study suggests something important:

RA may directly increase the risk of iron deficiency anemia (IDA).

This means iron deficiency could be silently adding to your fatigue, brain fog, and breathlessness — and many people with RA never know it.


 What the Study Found

1. RA can cause a higher risk of iron deficiency anemia

Using Mendelian randomization (a genetic method that shows cause, not just correlation), researchers found that people genetically predisposed to RA are more likely to develop iron deficiency anemia.

2. RA does not automatically cause all forms of anemia

The risk increase was specific to iron deficiency, not anemia in general.

3. RA-related immune pathways interfere with iron

The inflammation and immune activation seen in RA — especially through pathways like interferon-gamma, Th1/Th2, and Th17 cells — can:

  • Block iron absorption

  • Trap iron inside cells

  • Reduce iron transport

  • Increase iron demand

This can lead to iron deficiency even if you’re eating well or your hemoglobin looks normal.


What Iron Deficiency Can Feel Like

Symptoms often overlap with RA, which is why they get missed:

  • Extreme fatigue

  • Feeling breathless or easily winded

  • Heart palpitations

  • Feeling unusually cold

  • Dizziness

  • Restless legs

  • Brain fog

  • Weakness

  • Pale skin or dark under-eye circles

Many people with RA live with these symptoms thinking they’re “just part of the disease.”

low energy and brain fogsymbols
Just two of the symptoms of iron deficiency

My Personal Story With Iron Deficiency and RA

For the longest time, I assumed every ounce of fatigue I felt was simply RA doing what RA does. I pushed through dizziness, breathlessness, and that sinking, heavy tiredness that made everyday tasks feel ten times harder. I kept telling myself: this is just how it is.

My usual blood tests looked “fine,” so I tried to convince myself that I was fine, too. But something inside me kept whispering that this level of exhaustion wasn’t normal — not even for RA.

Eventually, I asked for a full iron panel, including ferritin.
That’s when everything clicked:

  My iron stores were almost depleted, even though my hemoglobin was normal.

It was such a mix of emotions.
Relief — because finally there was an explanation.
Sadness — because I’d spent months believing I was failing, instead of being iron-deficient.

Once I started treating the deficiency, the difference was noticeable. My mind felt clearer. The crushing fatigue eased. Walking didn’t leave me gasping for air. I finally felt a little more like myself again.

It taught me something important:
RA can interfere with iron in sneaky ways, and iron deficiency can hide behind “normal” blood tests.

If you feel like your fatigue is out of proportion — or simply different from your usual RA tiredness — it’s absolutely worth asking your doctor for proper iron studies.

You don’t have to just push through it. And you’re not imagining it.


What Tests to Ask For

To properly screen for iron deficiency (not just anemia), ask for:

✔ Ferritin (most important — measures iron stores)
✔ Iron
✔ Transferrin saturation (TSAT)
✔ Total iron-binding capacity (TIBC)
✔ Hemoglobin

Ferritin can be low long before hemoglobin drops — meaning you can be iron-deficient without technically being “anemic.”


What This Means for People With RA

This study supports what many people with RA feel but rarely get validated for:

RA affects iron regulation — and iron deficiency can make fatigue significantly worse.

The good news is that iron deficiency is treatable. And treating it can improve:

  • Energy levels

  • Stamina

  • Mental clarity

  • Mood

  • Sleep

  • Overall quality of life

It won’t cure RA, but it can lighten the load you carry every day.


Final Thoughts

This new research strengthens the idea that RA is not just a joint disease — it affects your entire immune system, your metabolism, and even how your body handles iron.

If you’re living with a level of fatigue that feels unfair, overwhelming, or out of character for your usual RA symptoms, you are not alone — and you’re not “just tired.”

A simple iron panel could make a world of difference.

You deserve answers.
You deserve energy.
And you deserve to feel as well as possible while living with RA.

Rheumatoid Arthritis and Iron Deficiency


Sunday

Living with Rheumatoid Arthritis: A Personal Journey

The morning begins with a familiar ache, a deep, gnawing stiffness that settles into my hands and knees like an uninvited guest. Rheumatoid arthritis (RA) doesn’t just wake up with me; it dictates the rhythm of my day. Diagnosed ten years ago at 35, I’ve learned to navigate a life shaped by this chronic autoimmune disease, one that attacks my joints and, at times, my spirit. This is not just arthritis, as some might assume—it’s a systemic condition that reshapes every facet of existence, from the mundane to the profound.

Living with Rheumatoid Arthritis

The physical toll is relentless. Mornings are the hardest, with stiffness that can last an hour or more, making simple tasks like buttoning a shirt or holding a coffee mug feel like Herculean feats. My fingers, once nimble enough to type furiously or sketch intricate designs, now swell and protest, sometimes curling into shapes I barely recognize. Flares—those unpredictable surges of pain and inflammation—can derail plans without warning. A good day might mean a walk in the park or cooking dinner; a bad day means choosing between showering and eating because my energy is too depleted for both. Fatigue, a constant companion, isn’t just tiredness—it’s a bone-deep exhaustion that no amount of sleep can cure.

RA doesn’t stop at the joints. It’s systemic, insidious. I’ve learned to watch for signs of its reach beyond my knuckles and wrists: the dry eyes from Sjögren’s syndrome, a sidekick to RA, or the subtle chest tightness that reminds me of the heightened heart disease risk I carry—50% higher than those without RA, as I’ve read in patient blogs and medical sites. These realities force me to live with a heightened awareness of my body, always scanning for new symptoms, always weighing the cost of pushing through pain.

Emotionally, RA is a thief. It steals spontaneity, replacing it with calculated decisions about energy and mobility. I’ve canceled plans with friends, not because I don’t want to see them, but because a flare left me too drained to leave the house. The guilt of those cancellations piles up, and the isolation creeps in. I’ve seen it echoed in online communities like RA Chicks or posts on X, where patients like @Darcy2988 vent about the misconception that RA is just “stiff joints.” It’s not. It’s a degenerative disease that chips away at your sense of self. There are days I mourn the person I was before RA—someone who hiked trails, worked long hours, and never thought twice about opening a jar. Depression and anxiety, common among RA patients, have knocked on my door more than once.

Yet, there’s resilience in this struggle. I’ve found solace in digital tools like MyVectra, an app that lets me track my symptoms and flares, helping me spot patterns and communicate better with my rheumatologist. It’s empowering to see my pain quantified, to have data to back up my experience when I sit across from a doctor. Online communities have been a lifeline—through RheumatoidArthritis.net and X threads like those from @OGreat6, I’ve connected with others who understand the frustration of a bad day or the triumph of a good one. These spaces remind me I’m not alone, even when RA makes me feel like I am.

Treatment has been a journey of trial and error. Methotrexate, a cornerstone RA drug, tames the inflammation but brings nausea that lingers like a bad hangover. Biologics have helped, but the fear of side effects— infections, or worse—looms large. Physical therapy keeps my joints moving, and I’ve learned to love low-impact yoga, though I’ll never be the person doing headstands. These interventions don’t cure RA, but they’ve pushed me toward periods of low disease activity, moments where I feel almost normal. I cling to those moments, knowing a flare could be around the corner.

Socially, RA has reshaped my relationships. My partner has become part caregiver, part cheerleader, patiently helping with tasks I can’t manage. Friends have learned to adapt, meeting me for coffee instead of late-night outings. But there’s a sting in their well-meaning comments—“You don’t look sick”—that underscores how invisible this disease can be. Work is another battleground. I’ve scaled back hours, relying on accommodations to keep my job as a graphic designer. 


Despite the challenges, I’ve found unexpected gifts in this journey. RA has taught me patience, forcing me to listen to my body and respect its limits. It’s deepened my empathy for others with chronic illnesses, and I’ve become an advocate, sharing my story in support groups and online, hoping to educate others about RA’s reality. Like Lene Andersen, an RA advocate I admire, I believe in the power of patient-doctor partnerships and the strength of community.

Living with RA is a balancing act—between hope and pain, limitation and defiance. Some days, I’m angry at my body’s betrayal; others, I’m proud of its resilience. I think of patients like Linda Martin, who’s lived with RA since childhood, or the rare stories like @SakalliNuretdin’s on X, where remission came unexpectedly after years of struggle. Those stories fuel my hope, even if my path is different. RA has taken much, but it’s given me a new lens on life—one of gratitude for small victories, connection through shared struggle, and a stubborn refusal to let this disease define me.

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Living with Rheumatoid Arthritis


3 Millennials On Growing Up With Rheumatoid Arthritis

Rheumatoid Arthritis: 3 Millennials On Growing Up With Chronic Pain

"Be mindful of judging people when you can’t see anything going on."
By Natasha Hinde HUFFPOST
rheumatoid arthritis pain in millenials

During his worst flare-ups, Daniel Morley lies in bed wondering if he should just go thirsty. He desperately wants a glass of water, but his body is in so much pain, he can’t bear to move the five metres to the sink. His joints are on fire.

Rheumatoid arthritis (RA), which Morley was diagnosed with at the age of 19, is a long-term condition that causes swelling and stiffness in the joints – usually the hands, feet and wrists. The immune system mistakenly attacks cells lining the joints, causing intense pain that makes it hard for some sufferers to leave the house.


He first noticed something was wrong as a teenager when his knees swelled up and his ankles started causing him pain. During this time he took almost nine months off work. Morley was eventually referred to a specialist consultant, who drained fluid from his joints and gave him steroid injections.


Debbie Griffin, 32, from north Wales, was diagnosed at just two years old. She recalls realising something wasn’t quite right when she was five. “I was making friends in school and noticed I couldn’t do the things everyone else could do, like sports day,” she says.


Griffin experienced problems with her hips and knees during her early teens, to the point where she struggled to move even a few feet without being in pain. At 13 she had to have a knee replacement, followed by a hip replacement at 17.

“It impacts my life daily,” says the 32-year-old. Some days, she will wake up without any issues; other days she will be in so much pain she can’t leave the house. “Making sure I’m fit for work every day is a struggle,” says the service manager, who works for a national charity.

Louisa Flannery, from Leeds, was diagnosed with RA in the run-up to her GCSEs. Initially, she experienced a pain in her feet, and was told to wear insoles, but when it began to continue up her body to her knees, she was referred to a specialist. She was diagnosed at 15, after a year and a half.

As a teenager, Flannery found it hard being heard by the adults around her. She recalls having to miss PE lessons because of the pain. “I didn’t know what was wrong with me, so it was difficult to communicate with the teachers – I think they thought I was just using it as an excuse,” she says. “The invisible part of it is quite difficult. People forget because they can’t see anything’s wrong with you.”

Now studying for a Masters degree, Flannery, 25, struggles with constant pain in her ankles and shoulders, as well as her back and knees from time to time. “My hands are swollen and a bit disfigured,” she says, noting that it’s quite hard to write. ”I usually do computer work which is fine.”


READ FULL ARTICLE AT HUFFPOST

Thursday

Everyday coping with arthritis and chronic pain:pacing

rheumatoid arthritis coping ideas

Rheumatoid arthritis coping ideas

This illness isn’t something I manage easily. There’s no magic pill, no one-size-fits-all cure. But there are ways to live alongside it—and even reclaim some of the joy, energy, and laughter that pain tries to steal. I can’t tell you what will work for you. I can only share what’s helped me. I still have bad days. But now, more often than not, the good days outnumber them.

Over the years, I’ve absorbed advice from books, blogs, doctors, and fellow spoonies. But knowing something and living it are two very different things. The most helpful strategy I’ve learned—besides pain relief—is pacing.

So what is pacing? For me, it means listening to my body and respecting its limits. It’s not about doing nothing. It’s about doing things differently. I try not to push through pain anymore. If I feel a flare coming on or my joints start to ache, I stop. I switch to a gentler task or take a break altogether. That might mean the dishwasher is half-unpacked or the laundry is still in the basket. That’s okay. I’ll get back to it later.

Pacing also means building in rest before I need it. I take short, regular breaks—often lying flat on my back—to reset. It’s not laziness. It’s strategy. It’s how I keep going without crashing.

Pacing Tips for Beginners

Starting to pace can feel strange at first—especially if you're used to pushing through pain or trying to “keep up.” These tips are for anyone just beginning to explore pacing as a way to manage chronic pain or arthritis:

Simple Ways to Start

  • Track your energy: Notice when you feel most tired or sore. Use that info to plan breaks.

  • Set a timer: Try 15–20 minutes of activity, then rest for 5–10 minutes—even if you feel okay.

  • Use a notebook or app: Jot down what you did and how you felt. Patterns will emerge.

  • Rest before pain hits: Don’t wait until you’re exhausted. Resting early helps prevent flares.

  • Switch it up: Alternate between physical and mental tasks to avoid overloading one system.

  • Say “later” without guilt: It’s okay to leave things unfinished. Your health comes first.

Mindset Shifts

  • You’re not lazy—you’re strategic.

  • Resting is productive.

  • Small steps add up.

  • Listening to your body is a skill, not a weakness.

And yes, even writing this post is a reminder. My wrists are starting to ache now, so I’ll pause here. Maybe I’ll finish this later… or maybe I’ll just rest and call that enough for today.

Friday

Personal Stories of Rheumatoid Arthritis

Books about living with arthritis 

Saturday

Need inspiration to keep going?

Whatever chronic pain illness you have you will at some stage have thought about your mortality - pain and living in constant pain just gets you like that.


So what inspires you to keep on going, to just get on with your life? I am impressed by all the people out there who are just trying to help, not sell anything but offer their help or world view. Some of the places and people I find that help me are:


GNN Good News Newtork cause it is all positive news but not sickly sweet.


All Things Good for similar reasons.


I'm Not my Disease cause she is real and tells a story I can relate to.

Gonna Eat Worms cause she is real, a proud lesbian and writes well about her life with pain.



I think it works like a ripple effect - you connect in some way and it makes you feel better and then you can share that feeling and hopefully it continues on. I am not saying we should all be sweet and kind all the time, I am talking about keeping it real and keeping it in perspective.

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