Complex Regional Pain Syndrome

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I'm tired of being bedridden #PosturalOrthostaticTachycardiaSyndrome #ComplexRegionalPainSyndrome

I was diagnosed with CRPS last year in November. My life has been nothing but pain and hopelessness since. I'm 19 and will finish high school later this year (to give you an idea of my home situation), followed by a gap year due to my sudden chronic pain disorder and the fact that I'm of course struggling to adjust. The reason I'm graduating so late is a long, traumatic story I rather leave alone for now. When my family heard about my diagnosis a majority of them have been in denial that it's chronic. The pain meds I was prescribed don't work (I have a strong resistance to most meds), and these past few months have been spent doing school work, being bedridden, and being forced to try various workouts in hopes they'll somehow cure my CRPS. Long story short, none of these worked and just left me bedridden each time, but my family keeps throwing me into things I physically can't handle because of how extreme my pain is. I'm starting therapy again soon in hopes that can at least help a bit.

Here's my new hurdle: I may have POTS and my family refuses to even give it any thought. I deal with the feeling that my heart is racing, I often get dizzy, nauseous, extremely fatigued, headaches, brain fog, weakness in my legs, occasional digestive problems, occasionally blurred or blacked out vision for a few seconds, and occasional shakiness. CRPS and POTS are also often co-occurring. The only things that help? Laying down mostly, and occasionally salty snacks I think.

Here's my concern: I can't tell if this is POTS or just my CRPS combined with my lack of exercise. I'm not completely glued to the bed, so I doubt this, but I'm not sure. I really just want to know if I should push to get evaluated because this is getting debilitating and extremely disruptive, or if this is just my CRPS. Please share your thoughts if you'd like because I really am struggling here.

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Disability And Nuerodivergent Definition

Rejection Sensitive Dysphoria
Involves intense emotional reactions to perceived rejection or criticism, even when none is intended.
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Rejection Sensitive Dysphoria (RSD) describes intense emotional pain in response to real or perceived rejection, criticism, or disapproval. The reaction can feel sudden, overwhelming, and difficult to regulate, even when the situation seems minor or ambiguous to others.
RSD is most often discussed in relation to ADHD and is also experienced by many Autistic and AuDHDers and people with trauma histories. It reflects heightened emotional sensitivity and nervous system reactivity, often shaped by years of social misunderstanding, criticism, or chronic invalidation rather than fragility or overreaction.
RSD may show up as avoidance of situations where rejection feels possible, people-pleasing, withdrawal, or sharp waves of shame or sadness. With insight into patterns, support, emotional regulation skills, and self-compassion, and environments that reduce chronic threat, its intensity can reduce over time.

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I'm new here!

Hi, my name is TracyeIsHIS. I've been diagnosed with RSD/CRPS in 1998 and have been in daily pain ever since...

#MightyTogether

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Really Struggling - could use some tips

Hi all, my CRPS is really flaring at the moment (stress + grief). And my normal techniques (heat pad, tens machine) aren't working. Any ideas? #CRPS #ComplexRegionalPainSyndrome #ChronicPain

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Really Struggling - could use some tips

Hi all, my CRPS is really flaring at the moment (stress + grief). And my normal techniques (heat pad, tens machine) aren't working. Any ideas? #CRPS #ComplexRegionalPainSyndrome #ChronicPain

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I’m new here!

Hi, my name is Odd_Elle. I'm looking for support and wanting to provide support for others who are suffering.
I’d love to exchange experiences and share suggestions for the disease- CRPS/RSD.
#MightyTogether #Anxiety #Depression #PTSD #Grief #Migraine #crps #rsd

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Navigating Silence and Feelings of Rejection

Lately, I’ve been experiencing intense rejection sensitivity. I’ve gone through some circumstances that triggered these heavy emotions, and I must admit, they’ve been difficult to manage.

Over the holiday season, I felt left out. Unwanted. Unthought of.

I had been told by my family that everyone was doing their own thing this year. So, when Christmas Eve came around, I assumed there were no plans. But then my cousin texted me, casually asking if I was going to our other cousin’s house for dinner.

I had no idea what she was talking about.

I told her I must have missed the invite. That’s when my dad got involved. He reached out to his sister to ask why I wasn’t invited, and suddenly the story shifted. It was made to seem like I had been invited all along.

But that wasn’t true. Because if I had been invited, I would have been there.

I’m a stickler for tradition. I like things to stay the same, especially around the holidays. Family dinners are one of those traditions. So, finding out about plans after the fact felt jarring, like I had already missed something important without realizing it.

Eventually, the cousin who was hosting texted me and said, “Oh, you can come? I thought you were cooking?”

By that point, I already was.

I had made plans based on the information I was given, so I kindly told her I couldn’t make it after all. And then… nothing. Complete silence.

I followed up, trying to smooth things over. “I hope we can hang out soon.” No response. No reassurance. And no acknowledgment. Just silence.

I felt embarrassed that a scene had been made at all. Embarrassed that my dad chose to step in. And now, I can’t shake the feeling that everyone sees me as this fragile person who acts up when she feels left out.

This all stems from wanting inclusion because silence can often feel louder than words.

Before logic can remind me that people get busy or distracted, my mind and my body has already decided that something is wrong. Silence, to me, feels like distance. And that distance feels like rejection.

There’s been another thing that’s been irking me lately. One of my best friends is getting married. She’d told me about the engagement, but I hadn’t heard from her since. I had to find out through other friends what the plans for her wedding were. Turns out she’s getting married later this year in Romania. So, me having the RSD I have, I certainly can’t miss it.

I’m also going out there for my birthday in a few days, and I had planned to stay in Portland for a week. Come to find out, she’s having her engagement party later on that month. I was perplexed and confused as to why she couldn’t have planned it while I was already in town. But once again, I have a fear of missing out, so I decided I will most likely stay for the whole month just so I won’t miss it.

But what hurts most? The silence, yet again. There has been no communication between the two of us, and it hurts my feelings so much to learn about everything she’s planning through other friends. It makes me feel like I’m unwanted, or just not even thought of at all.

I’ve been contemplating talking to her about the distance I feel, but I’m afraid she might actually tell me she doesn’t want to be friends anymore. Deep down, I know she would never, but still, these thoughts cross my mind whether I like them or not.

When I reflect and look at these moments side by side, I see a clear pattern. It isn’t just about holidays or weddings or missed plans. It’s about silence and what silence activates in me.

This is what rejection sensitivity looks like for me.

When communication drops off or plans change without explanation, my body quickly fills in the gaps, often with fear, self-blame, and doubt.

What makes it so hard is that what I want in those moments isn’t conflict or confrontation. It’s clarity, inclusion, and knowing that I matter enough to be thought of, considered, remembered.

But speaking up feels too risky. There’s always a quiet fear in the background: What if saying something confirms what I’m already afraid of? So, I hesitate, stay quiet, and swallow my feelings. I try to regulate myself before reaching for connection, even when the silence is what’s hurting me most.

These reactions aren’t about the present moment alone. They’re layered with memory. With past experiences of being misunderstood, overlooked, or made to feel like I was too much to handle. I remember those moments, even when my rational mind wants to give people the benefit of the doubt.

I’m still learning how to sit with this sensitivity without turning it inward. To remind myself that wanting inclusion doesn’t make me needy, and needing clarity doesn’t make me difficult.

Silence may always register loudly in my body, but that doesn’t mean I’m wrong for feeling it. It means I care deeply about connection, and I’m learning how to hold that truth.

When you notice silence from someone you care about, how does your body react before your mind can process it? How might you respond differently knowing it could be about them, not you

“The greatest thing in the world is to know how to belong to oneself.” – Michel de Montaigne

#MentalHealth #Neurodiversity #ADHD #Anxiety #Depression #AutismSpectrumDisorder #Autism

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I'm new here!

Hi, my name is Briedi. I'm here because I have family member suffering with CRPS and I read Alyssa Laurens "what station 19 got wrong" so found this site

#MightyTogether

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The Quiet Cost of Holding it all Together

Most of the time, I keep it all together. I don’t like drama or confrontation of any sort, so I keep the peace, keep it calm, maintain a vibey flow. I put on a smile when I’m feeling down. I manage because I don’t want to let my walls down and let others see my pain. I never want to burden anyone with my problems, so I keep them tucked away.

I’m also not comfortable expressing myself, even with my closest friends, because I can’t get through a sentence without tears welling up. I just don’t like showing that side of myself.

When Everything Boils Over

But there are times when everything boils to the surface. When I crack. When I explode into an array of emotions.

It happened just the other day during an intense RSD episode. I took an idea, ran with it, and ended up harming others and myself. I made this whole big thing out of nothing, and now I’m left feeling embarrassed, guilty for jumping to conclusions, and hurting the people closest to me by calling them out.

“Most of the time I keep it together. But underneath it all, there’s this underlying exhaustion.”

Exhaustion from trying to keep up appearances, trying to be put together, trying to hold myself in check while my mind and body are carrying a heavy load.

The Weight of Depression

Lately, I’ve been going through a major bout of depression. I don’t even know what triggered it—whether it’s seasonal, situational, or the weight of too many unresolved stressors piling up at once. My habit is to push it all to the side, essentially erase it from my brain until it all reaches the surface.

And when that happens, I’m forced to confront it. My emotions go all out of whack. I cry. I scream. I meltdown. I freeze. I feel everything at once.

It’s a major heavy load to carry. I feel like I’m always walking around with a rock tied to my shoulders. I’m always tense, always doubtful, always anxious.

And yet, I still manage to keep it together. I keep it together because I don’t want to burden anyone. I keep it together because I don’t want people to see how much I’m struggling. I keep it together because that’s what I’ve always done.

The Cost of Keeping It Together

But it comes at a cost. Holding it together is a vicious cycle of “pretend I’m okay” while being emotionally and physically exhausted. It’s carrying so much inside and rarely letting it out until it all erupts. And even then, even in the explosion, it feels messy and hard to handle.

This is the quiet cost of always holding it together.

It’s not something that people notice because from the outside I look fine, capable, calm, functioning. But inside, there’s a constant effort to stay composed, regulated, and to keep everything from spilling over.

I’m learning that holding it together all the time is more about survival than strength. And surviving this way leaves very little room for rest. It leaves me holding everything alone, even when I don’t need to.

Learning to Loosen the Grip

I don’t suddenly know how to let my guard down or express myself without tears. But I’m starting to recognize the pattern.

Maybe the work isn’t about falling apart or fixing it all at once. Maybe it’s more about loosening my grip just a little and stop pretending I’m okay when I’m not.

Because constantly holding it together has a cost, and I’m learning that I don’t have to pay it alone.

Where in your life are you holding it together at the expense of your own well-being?

“You don’t have to control your thoughts. You just have to stop letting them control you.” – Dan Millman

#MentalHealth #Neurodiversity #Depression #Anxiety #ADHD #AutismSpectrumDisorder

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I'm new here!

Hi, my name is Jacqui2025. I'm here because I have chronic back pain and Complex Regional Pain Syndrome in my left hand. It is making me very depressed and I would like to learn how other people with chronic pain manage.

#MightyTogether

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