Complex Regional Pain Syndrome

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Complex Regional Pain Syndrome
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Paper Hearts

Paper Hearts
It wouldn't take much. Just a few more pills and another swallow or two.
I look up at the paper hearts strung across my art studio. I remember making them, hand-punching the hearts from old Christmas cards and any scrap of cardstock packaging that arrived in a happy color. An empty embossed perfume box. A colorful file folder that had seen better days. Garlands of invisible fishing line swoop out from the middle of my ceiling, hung together like the swag top of a circus tent.
The rotary fan swings toward the bed I've parked in the middle of the studio for days exactly like this one. The fan's breeze catches the garlands, and my paper hearts do the hula. Then the air reaches my feet.
I suck in a breath. It's only a breeze, the kind anyone else would call pleasant. But it lands on me like a struck match. The veins in my legs push up under my skin like snakes wrestling under silk. Both feet are swollen, mottled red, going blue at the toes. Everything from the waist down is hot to the touch and burning, as if pointed teeth were devouring my flesh from underneath.
I kicked off the sheets over an hour ago because even smooth cotton feels like sandpaper. This is my Princess and the Pea moment. Every grain of dirt, every bit of fuzz, every g*ddamn f*cking "pea" is unbearable. The acid fire keeps climbing, and my emotions race alongside it, neck and neck.
I know this kind of flare all too well. The CRPS will cost me more time, more mobility, more living. More everything. It wants to bankrupt me.
Am I bankrupt? Hm. Have I hit that place of desperation that has made others in my situation start to cut off their own limbs just to make the pain stop?
I start to tally how long this episode might last and how much of my life I'll lose to it again. A day? A week? A month? Months? Years? I've lived with these flares for decades now. (Yes, plural.)
Ugh. That's the part that's hardest to process with chronic pain. The loss. The part the "professionals" never prepare you for, because let's face it, those motherf*ckers don't know anything about living with real chronic pain. They're textbook smart. Research smart. They have that in spades. But they've never lived it. Not one of them…, at least none I’ve met. And living with it is devastating.
But still, I keep making their recommended follow-up appointment every month, each one costing me another $75 copay, plus whatever it costs out of pocket to pee in a cup. All this joy only to be informed that yes, I'm taking pain medication, and nothing has changed. The prescriptions they write me cost hundreds of dollars I don't have, but I spend them anyway, on dwindling credit.
Then one day the opioid crackdown is all over the news, and the same pain "specialist" I've been responsibly working with writes in my file that I'm suddenly an addict. He will no longer prescribe the only medication that helps. The one that took years to get right, the dose and the combination, mind you. Nope. Addict is stamped in my file. Wait, what?
If I were dying, they'd hand me the pills and a warm blanket. But I'm not dying. I'm just living, the whole long timeline of it, under siege. And now this idiot has cut me off for the sake of his comfortable career, not the well-being of my health. Great job with that Hippocratic/hypocritical oath, asshat. You have caused me harm. No, really, I insist. Go enjoy another round of golf on me.
I look over at my easel. I should probably start something new. Sketch, or paint, or write, or hell, even cut snowflakes out of folded copy paper. Seriously, anything to get me through this funk.
Life isn't that dire, is it?
I sigh and refuse to cry.
I'm sitting in my stuck.
Hurting. Broken. Alone.
All alone.
So why not a handful of pills? Right?
I know why not. I think of my friend who made that choice. His mother's face at the funeral, how she kept smiling at people so they wouldn't have to.
The fan comes back around. The hearts are still dancing, even though I cannot. They'll stay colorful and cheery, those virtuous little recycled color bombs.
I could sleep it off, or I could call a hotline. I think about the hotline the way you think about a dentist. I'd have to explain it all again to someone reading from a script. The buzzword pep talks. The reminders that Jesus loves me. The therapists who just listen and then question every word, with no end in sight. F*cking counselors. And f*cking doctors, for that matter. Such a racket.
I decide. My hand finds the pill bottle. The pills I've saved for these kinds of flare days. An opioid prescription they won't give anymore to those of us who really need it, because of those who abused it. Because of the "specialists" who once threw it at their patients the way banks handed out mortgages before the crash.
I fumble with the cap until it gives a small click. The pills rattle inside as I shake out one, no, two…
No, one.
I put the other back before I can reconsider. I need relief, need to sleep through the worst of this, but I hate having to weigh today's pain against a day that hasn't happened yet. When these are gone, I don't know whether I can get more.
I swallow the Vicodin. Better to try and sleep through 10 out of 10 fire ouches than try to be human at this point.
But when I wake up, I should get my charcoals out and draw instead of this nonsense. Or a bath. Yeah, a cool bath might help. But I know, nothing really helps.
I look at my legs and wait. Twenty minutes until the pain meds kick in. I start counting. Twenty minutes. I can do this… Lord, help me through this.

Victoria Anderson

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I'm new here!

Hi, my name is DiscoveringIguana83. I'm here because I have been diagnosed with CRPS. My health is steadily declining recently and I can't keep up. I feel lost and alone.

#MightyTogether

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I'm new here!

For nearly two years, Layla was evaluated and treated for suspected relapsing polychondritis, a rare inflammatory disease affecting cartilage, along with amplified pain syndrome (AMPS). She received biologics and other medications, but we continued searching for answers. Although specialists had different opinions about her diagnosis, a recurring theme was the possibility of an underlying complex pain syndrome.Meanwhile, my father was battling mycosis fungoides, a rare lymphoma, and my mother was living with Alzheimer's disease. I spent my days advocating for my father while Layla underwent treatments and received home instruction, trying to be there for my husband, Zach, and our older daughter, Eliana, too.my father died in March 2026. Days after his funeral, we moved my mother into assisted living, and I took Layla to Mayo Clinic. It was there that we first learned about Red Ear Syndrome, a rare and poorly understood condition that offered a different perspective on her symptoms.That August, as Layla's ear flared again, I became sick. Painful mouth ulcers left me barely able to eat or drink. I was diagnosed with pemphigus vulgaris, a rare autoimmune blistering disease, and began steroids and Rituximab infusions.Through instagram, I discovered Dr. Alon Seifan of NeuroWell, a physician I might never have found otherwise. He began approaching Layla's symptoms through Red Ear Syndrome, complex regional pain syndrome (CRPS), and migraine-related mechanisms. His approach to treating her migraines was different from what previous neurologists had tried, and we're finally seeing encouraging results. As Layla's medical journey evolved, so did our understanding. Today, we're exploring the possibility that her symptoms are primarily neurological and pain-related rather than autoimmune.#Pemphigus vulgaris #redearsyndrom e #ComplexRegionalPainSyndrome
#MightyTogether

Home - HRR

HOME RESOURCES (MM2H) SDN BHD家源 (马来西亚第二家园) 有限公司 是 HRR 集团旗下的公司,是马来西亚旅游、艺术与文化部 (MOTAC) 颁发的 MM2H 计划执照持有者。[执照编号:MM2H875]
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♿️🫥Invisible Disabilities Week🫥♿️

This week – Invisible Disabilities Week – is an opportunity to raise awareness, further understanding, and provide support to all those living with invisible disabilities.

As someone who lives with invisible disabilities, including Functional Neurological Disorder (FND) and Ehler-Danlos Syndrome (EDS), I understand the importance of raising awareness of invisible disabilities and the challenges experienced by individuals living with such disabilities.

Please know that if you are living with an invisible disability, and the challenges that go with it, you are not alone in your struggles.

#Disability #ChronicIllness #ChronicPain #InvisibleDisability #MentalHealth #FunctionalNeurologicalDisorder #EhlersDanlosSyndrome #Anxiety #Depression #Fibromyalgia #Asthma #ADHD #BackPain #Arthritis #RheumatoidArthritis #ComplexRegionalPainSyndrome #MightyTogether #ChronicFatigue #Endometriosis #IrritableBowelSyndromeIBS #Migraine #RaynaudsPhenomenon

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Mountain by Melanie R.

Mountain by Melanie R.

Oh, moved that mountain!

Go tell it-
Go tell it on the mountain!
Jesus got me over that mountain!
Go tell it on the mountain,
Jesus Christ’s My Lord!

Couldn’t get over it.
Couldn’t go under it.
Couldn’t climb to the top.
Couldn’t get past that big ol’ mountain on my own.

From the bottom-
Where I called Him.
When I lifted up mine eyes.

Faith was tested, but I trusted
All His strength- not mine!

Brought me to the other side!

Strength in the struggle,
Power in my prayer.
Cast in the sea,
Moved that big ol’ mountain from here to there!

Echos from the canyon!
Hallelujah!

Jesus!
Oh, Jesus!
Moved that mountain!

Told it to move! Get outta my way!

Told it to move! Get outta my way!

Oh, sun is shining so much brighter!
Nothing standing in my way!
See the horizon?
God is Mighty!
God is Mighty!

My God so Mighty!

Oh, moved that mountain!

Go tell it-
Go tell it on the mountain.
Jesus got me over that mountain.
Go tell it on the mountain,
Jesus Christs my lord

Couldn’t get over it.
Couldn’t go under it.
Couldn’t climb to the top.
Couldn’t get past that big ol’ mountain on my own.

From the bottom-
Where I called Him.
When I lifted up mine eyes.

Faith was tested, but I trusted.
All on His strength- not mine.

Brought me to the other side!

Go tell it-
Go tell it on the mountain.
Over the hills and everywhere.
Go tell it on the mountain-
Jesus Christ’s My Lord!

Moved that mountain!
Jesus Christ’s My Lord!

#InsideTheMighty #PrimaryImmunodeficiency #MitochondrialDisease #ChronicIllness #ComplexRegionalPainSyndrome #IrritableBowelSyndromeIBS #PosturalOrthostaticTachycardiaSyndrome #MightyPoets #RheumatoidArthritis #HypothyroidismUnderactiveThyroidDisease #ChronicPain #ChronicInflammatoryDemyelinatingPolyneuropathy

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Hi! Introducing me!

I just joined The Mighty and in my introductory post I received a Welcome by Kasiagirl8. I noticed that she created this group and since I am a Catholic I thought it was very fitting for this to be my first group to join.
A little about me. My name is Marti Ann. I live with a rare neurological pain disorder called CRPS. I use a spinal cord stimulator to help manage my pain along with medications and therapies.
I also have my faith. I’m deeply spiritual with how I feel God has blessed me and helped me through my life.
I look forward to meeting other Warriors in this community.

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Pain Anniversary

Here I am, finally, on The Mighty, and celebrating my 31st Pain Anniversary. Yes, you heard me. I am celebrating. It is bittersweet but it is my life. I live with CRPS, a chronic neurological pain disorder, a severe pain. Yet, I live.

I have watched The Mighty from the sidelines. Watched it grow and foster community and support for so many different types of Warriors. I have always been active on Facebook and Instagram. Last year I joined TikTok. But lately I have been on Substack sharing my thoughts and stories about living as a Chronic Warrior. I have begun writing a guest blog on The RSDSA website.
In my eagerness to keep helping our community I want to participate and hear from everyone. That’s what has lead me to joining The Mighty. To be a part of a community that is already doing great work.

How many of us celebrate our pain anniversaries? The thing that changed our lives? It is our personal awareness day. Within it is a cascade of emotions. Another cycle of grief while remembering that my life has purpose and meaning. Bittersweet as I have gained so much while balancing a life with pain.

This Chronic Warrior just wanted to introduce herself to The Mighty community. Thank you for taking the time to read my introduction!

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