Complex Regional Pain Syndrome

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Stripes & Stars of Rare Disease by Melanie R. #RareDisease #ChronicFatigue #MitochondrialDisease #IdiopathicIntracranialHypertension #ChronicPain #InsideTheMighty

Stripes & Stars of Rare Disease
By Melanie R.

Our faith as our anchor.
Our hope’s guiding light!

Amidst all the struggle,
we share in our plight.

Bringing awareness;
to comfort and guide.

To face rare disease
locked arms-
side-by-side.

A journey set forth,
uneven terrain.

Traveling on suffering,
forged purpose in pain.

A chorus of voices
uniting in song-
ring out together,
but battles go on…

Our trials and triumphs,
resilience and strength,
brought us all here
on rare disease day!

So join us in chorus,
wear stripes to support-
our healing begins,
it starts in our heart.

For stripes shine like stars,
by stripes we are healed,
Restoral by scars
Our voices they hear.

Remember Rare Disease Day is February 29th, 2024!
We share in the suffering and the glory!
Stay strong and God bless you all in a mighty, mighty way!

#ChronicIllness #ChronicPain #IrritableBowelSyndromeIBS #ComplexRegionalPainSyndrome #AxonalNeuronalNeuropathies #InsideTheMighty #MightyPoets #MightyTogether #christiansonmighty

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I'm new here!

I'm very glad to have found this community. Most of my disabilities (or challenges, as I sometimes refer to them), occurred eight years ago. Some go back further. My character was built around the circumstances which presented along life's path, and how I chose to proceed physically, mentally and emotionally. Each of us is a survivor, fighting a battle, be it visible or invisible. Regardless of which, know that you are understood and validated. 💜🧠💜

Survive To Thrive

#MightyTogether #ComplexPosttraumaticStressDisorder
#PostTraumaticParoxysmalHemacrania
#PersistentPostConcussiveSyndrome
#VestibularMigraines
#TraumaticBrainInjury
#Tinnitus
#Hyperacusis
#ExaggeratedStartledResponse
#ComplexRegionalPainSyndrome

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😳What Said What?!😳

When you live with a chronic health condition or disability, especially if you’re a younger looking person, young adult, or an ambulatory wheelchair user, there’s a good chance that you will have been unfortunate enough to have experienced some negative & hurtful comments from people.
There’s the classic comments that people living with Invisible Disabilities will have heard, for example “You don’t look sick.” & “It’s all in your head.”
Then there’s the unfortunate comments that people living with Mental Health conditions such as Depression & Anxiety will have heard, for example “Cheer up.” & “Stop worrying about it.”
And if you’re an Ambulatory Wheelchair User? Wow! The looks alone can be upsetting! I’ve lost count of the number of times I’ve been met by judgemental looks from people when we park our car in a Disabled Parking Space (I am a valid Blue Badge/Disabled Parking Permit holder) because I “don’t look sick/disabled” when I’m sitting in a car. These looks soon change when these people see my wheelchair but by then I’ve already started feeling awkward, embarrassed & like I have done something wrong when all that’s really “wrong” is that I have a neurological disorder which causes debilitating symptoms. It may be a brief moment of prejudice but that is still a brief moment too long in my books. It’s so important that we continue to raise awareness of the various chronic conditions & disabilities because it’s only through making people more aware these issues that change can happen & hopefully people with disabilities & chronic illnesses won’t have to deal with such rude, inappropriate & often upsetting remarks. In the meantime, when we heard comments that are hurtful or prejudice looks, we need to do our best not to let these remarks cause us any further damage or embarrassment – which is something that I definitely still struggle with a lot.
Stay strong, stay Mighty & by the best ‘you’ that you can be!
🧡💙💜💝
#ChronicIllness #ChronicPain #MentalHealth #Anxiety #Arthritis #BackPain #ChronicFatigue #ChronicFatigueSyndrome #FunctionalNeurologicalDisorder #ChronicDailyHeadache #ChronicLungDisease #Disability #ChronicObstructivePulmonaryDisease #ComplexRegionalPainSyndrome #InflammatoryBowelDiseaseIBD #IrritableBowelSyndromeIBS #Lupus #Fibromyalgia #Grief #ADHD #AnorexiaNervosa #Endometriosis #MightyTogether #MightMinute

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I’m new here!

Hi, my name is AmusingEchidna704. I've been diagnosed with crps and really looking for support as my mental health issues are now far worse than they have ever been

#MightyTogether #Anxiety #Depression #BipolarDisorder #ADHD #Grief

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I'm new here!

Hi, my name is AmusingEchidna704. I'm here because I'm feeling completely alone, I have no support system and after my injury that left me with crps I was abandoned. I need support as I've lost everything and no longer have access to mental health care and physical care until I'm done going through this long and drug out process

#MightyTogether #Anxiety #Depression #BipolarDisorder #ADHD #Fibromyalgia #CRPS

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I'm new here!

Hi, my name is AmusingEchidna704. I'm here because I'm feeling completely alone, I have no support system and after my injury that left me with crps I was abandoned. I need support as I've lost everything and no longer have access to mental health care and physical care until I'm done going through this long and drug out process

#MightyTogether #Anxiety #Depression #BipolarDisorder #ADHD #Fibromyalgia #CRPS

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I Wear My Stripes For Rare Disease!

Rare disease indiscriminately strikes, and understanding life’s plan through the complexities can be overwhelmingly challenging; but also an opportunity beyond the suffering.

Although medical technology has advanced and new treatments have been discovered; rare disease often times have no cure, are misunderstood, difficult to diagnose, and be provided effective treatment for.

Many rare diseases involve multiple organ system dysfunction infiltrating the genetic blue print, which wreaks havoc throughout the entire body.

It’s a long, arduous diagnostic journey for not only the rare disease patient, but also for the dedicated medical professionals, friends/family standing by them, and supporting the rare disease sufferer through the great unknown of rare chronic illness.

Thank you for prayers, caring & sharing!

I wear my stripes in support of Rare Disease!

Wear Your Stripes in Support of Rare Disease Day February 29th, 2024!

Thank you Jesus!
…and by His stripes we are healed!
🙏💪🏻✨❤️‍🩹
God Bless!

#RareDisease #MitochondrialDisease #SjogrensSyndrome #sjogrens #IrritableBowelSyndromeIBS #RheumatoidArthritis #ComplexRegionalPainSyndrome #ChronicIllness #ChronicPain #IdiopathicIntracranialHypertension #PeripheralNeuropathy

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I’m new here!

Hi, my name is jonestra. I have Complex Regional pain syndrome, as well as 8 more chronic pain diseases. I hope to find others who have what I have . Fibromyalgia, Ankylosing Spondylitis, Psoriatic Arthritis, Trigeminal Neuralgia, Gastroparisis, Hypothyroidism, Cervical Dystonia, lymphedema, I hope to meet others with my diseases so I can learn more about each of them I have had Complex Regional pain syndrome for 23:years this June. I was healthy until getting this and now I live daily with something flaring.

#MightyTogether

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Feel like a broken record!

#ChronicPain #ADHD #Grief #ComplexRegionalPainSyndrome #Depression

I suffer with all of the above. I’ve struggled with my mental health since I was in high school. My parents although they had their marital struggles were amazing and did anything they could to help me. Flash forward to 2018 which started the downward spiral.. my mom was diagnosed with Dementia and I’ve slowly been grieving her ever since. She was my biggest cheerleader in life. October 2019 I was out celebrating my boyfriend now husbands birthday.. long story short was hit by a car walking home. My injuries have healed but I’m left with constant guilt trauma and shame that I’m not better. I have been diagnosed with CRPS. Mostly neuropathy in my left ankle. On three different meds for nerve pain and still have it,l. Some days are way worse than others
2024 my mom doesn’t say much anymore and sometimes won’t even open her eyes. Who knows how long she has left.

My husband is amazing. His mom passed away when he was young. We have both our dads but I am missing the compassionate care of my mom. She’s basically dead but not yet.

I struggle to take care of me. I want to lose weight,l. To enjoy my marriage. To not feel like a burden or broken record to my family and friends. I can’t seem to stay consistent with anything.

Ok if you got this far thank you. ❤️ wanting to feel less alone at 34.

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