Complex Regional Pain Syndrome

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Mighty Family!!!! I have missed you guys so much and thought and prayed for you daily ❤️

Months ago I was at my very worst. My health had gotten so poor that I was fully bed bound and unable to do anything on my own. I also needed constant care with my memory getting so bad I forgot my name, who my family was, all friends a missing blavk hole where they should have been in my memory. I kept getting lost and confused not remembering basic words and my hands were still excruciating with their inability to work getting even more drastic. My pain was a 10+ though doctors only think pain is a 1 to 10 we know it still can rise to the thousands.

Suicidal thoughts were so bad I was actually planning though losing a best friend's to suicide at 15yrs old still kept me and will always keep me from taking a step no one can come back from that haunts family and friends and leaves things so very messy and heartbreaking.

My so-called pain doctor was still doing nothing after 3 years and countless appointments begging for help I'm any form. He kept me on the same teeny tiny dose for years and wouldn't try any other meds or any other options. I had had no episodes ever of overdose or failing any drug tests but still he refused to help at all despite my first appointment with him where he promised to help me get to where I could shower and dress myself daily.

I wanted to ditch him as my doctor soooo many times despite him being my third and last option since we hadn't been able to find any replacement.
I realized the stress and misery he brought me always and especially after every three month appointment. It wasn't worth the useless dose of medicine I was on. Many doctors left me in a lurch to taper off my meds on my own. I knew how to do it so I called and said I was dropping him as my doctor. From that moment on I felt relief like the biggest weight was gone. Yes my pain was excruciating but my mental health was the biggest mess because of so many doctors refusing to help and leaving me since I was 'too complicated for them'. They just didn't want to put in the work at time.

Why be a doctor if you don't want to help anyone?!

Steadily my mental health improved immensely. I had moments where I was happy though still in pain. Naturally I am a very optimistic and happy soul but moving to a new state and having the cruelest doctors unsurprisingly made me so much worse.

I have a home health nurse that actually wants the very best for me and that was priceless and enough.

And then I got a brilliant and lovely rheumatologist who actually asked intelligent questions, explained answers, and was invested in taking as much time as needed to finish solving my health. He UNDERSTOOD!!! And at my second appointment with him he told us the answers we had been searching for for 17yrs! Since I was 13.

On top of my many inherent diagnoses I had psoriatic arthritis spine arthritis, and rheumatoid arthritis!!!!
The thing that we all thought was lupus but just barely didn't fit was the psoriatic arthritis!
It was the last piece of a puzzle we had tried solving many a time.
Interestingly I had finally narrowed my research to these diagnoses and was months away from figuring it out too.
But I was very happy to have the answers early!

My first appointment with the rheumatologist he gave me arthritis medicine and WOW did it work and so much better than any medicine my hundreds of doctors over the years had tried.
My hands improved!!!! I had feeling in them again and was able to do so much more than I had since I was 16 when I had my waist down reconstruction surgeries that would lead to arthritis all over my body especially to where I was completely unable to use my hands by 17. It was so embarrassing and painful that my body seemed so intent on not working eight. Oh how I just wanted you be normal!!!

And my last but of good news is I at LAST got a new pain doctor after being without officially for three months. My mental health anxiety and depression had improved so that my stress and thereby my pain had decreased to #9 on the pain scale!!! After being a 10 for almost 8 years!!!!!

My new pain doctor was COMPLETELY the opposite of my last one.

From a guy who ALWAYS worse fancy suits and thousand dollar shoes to one in jeans and a t-shirt.
From a guy who never smiled and wouldn't put in time and effort to a guy who smiled the whole appointment and was ready and Excited to put in the work to help me live my very best life!
From a guy who was too proper and cold to one who was so friendly and happy about his job.
From one who was terrified of any teeny hit of using medicine to one ready to take any risk if it meant helping his patients be safe but with less pain.

My new doctor was like the twin of actor Vin Diesel and he was so SO SO tall!
Even better since the drive is so hard for patients to do always, he would do telehealth for two appointments, one in person, and then another two telehealth appointments etc. Yay!!!!! Hallelujah!!!
Lol I was and still am so happy! And he wanted a telehealth appointment a week after the first appointment yo make sure my new meds were the best option.

For YEARS I have wanted a doctor who was there to help always and one who helped me with my meds rather than drop me in a black hole and leave all alone to figure out and guess by myself. To actually be a TEAM and work together to help me help my body so I would LIVE like I had begged all my doctor to help me to no avail! I could have a LIFE that I loved and do fun things and spend time with my family!!!! No more sleeping life away in pain and misery and hopelessness!!!!
It only took 17 years! Haha!

So now I am BACK and back to my happy self. I still have aches and pains full body and I have all my health issues and more besides but I am in a better place than I have ever been.

All of your support and love and encouragement to take time for ME was what I needed. I am so thankful for it and for all of your help over these many years.

Now if only it could get easier to post with no problems like before I would dare to call life quite perfect right now ;) 🙏

So consider this a reminder thar life is worth it! If things suck now, just remember that if one day they come up with something that can help you and your conditions, I PROMISE you will want to be around then to live your best life.

Hold onto hope! DON'T GIVE UP!! Please please don't. Through sheer will and the grace of God I am still here and gosh do I look back now and say it was worth the wait I wouldn't want to relive it lol but having a possibility to go to the movies again and do fun things out in the world with my family? It is priceless! Please hold on. Please. You and your best life are worth it! You are Not alone in this.

I am cheering you on and I am on your side. Your happy is out there! You CAN do this!!!!

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #bedbound #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #HypothyroidismUnderactiveThyroidDisease #Grief #Insomnia #Lupus #Lymphedema #Headache #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #PTSD #plantarfasciitis #PanicAttack #PanicAttacks #Psychosis #PsoriaticArthritis #RareDisease #RheumatoidArthritis #AnkylosingSpondylitis #MentalHealth #MemoryLoss #MightyTogether #SuicidalThoughts #Scoliosis #Migraine

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I’m new here!

Hi, my name is Beck Noyes. I’ve read many articles from the Mighty online. I was surprised many of my diagnoses didn’t come up when I was signing up. I do have a few more rarer syndromes, including CRPS (complex regional pain syndrome/reflex sympathetic dystrophy - I have it full body and internal organs), gastroparesis, POTS, IBS, GERD, Fibromyalgia, chronic migraines, occipital neuralgia, chronic pain syndrome, chronic fatigue syndrome, OCD, C-PTSD, and an undiagnosed heart condition, possible undiagnosed other conditions.

#MightyTogether #AutismSpectrumDisorder

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A Heart Set Free

A great winded rhythm under way;
prickled readiness underfoot.
A mission called into blended shadows-
undulate in shades of smoke as hope glimmers.

Drumming a cleared path of yearning webs for justice where a brightened light pierced an open door.

Candlelit wonders motion the
clouded puffs to view a saved heart… set free.
Chosen and preserved.

A living hope guarded in faith.

Examined, mourned,…pressed,…scarred,…

shattered-
Never faltered, never failed.

Search me, Oh Lord, and know my heart.
Lead me through the Everlasting Way.
I’ve been tested, and tried… know I am true,…know my heart.
You are my indwelled heart pounding through the center of my being.

Monitor my steadfast rhythm-
the intricate design of each ticking…
of each pulsed beat transformed by this undeniable salvation.

Jesus, with every heartbeat we thank you for your mercy, wisdom, and preservation.
The Holy temple of purpose is pumping power overflow, and is an endless conduit to strength in suffering.

Take heart mighty warriors!
God be with you all!

#MitochondrialDisease #sjogrens #PosturalOrthostaticTachycardiaSyndrome
#IrritableBowelSyndromeIBS #RareDisease #HashimotosThyroiditis #ComplexRegionalPainSyndrome #IntracranialHypertension

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My Way To Become Centered, Find Peace And Relaxation

I'm a rebel crafter. 🧶😏 I can follow patterns but most of the time I prefer to use my instincts and design my own pieces, like in this combo image. I think that must be the same approach I've used in my healing journey. My instincts have sharpened and my self-awareness has increased my mindfulness capabilities.
💜🧠💜 Survive To Thrive 🕊

#MightyTogether #DistractMe #MentalHealth #Trauma #Anxiety #MightyPets #Depression #ExaggeratedStartleResponse #intimatepartnerviolence
#TraumaticBrainInjury
#NeurologicalVisionImpairment
#PostTraumaticParoxysmalHemicrania
#PostconcussionSyndrome
#ChronicVestibularMigraine
#ComplexPosttraumaticStressDisorder
#ComplexRegionalPainSyndrome
#Osteoarthritis
#ADHD

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Your Pain Is Shared, Your Words Carry Truth And Meaning, You Are Valid

What I needed most early in my healing journey, was to feel validated. Once not only did I understand this but really believed it to be true, I was able to make sense of how and why the therapy was designed to help bring me to my New Normal.

It takes being brave enough to accept the new empty canvas which your chronic illness(s) mental, physical or both has/have presented you with. Then, it takes deciding how you intend to paint that canvas.

Will it be with positive mindful forethought? If it's too much to think past the blank canvas right now, that's ok. Just remain mindful and strong. It'll be there, ready for you when you're ready to paint your bright future. 🖼

#MightyTogether #DistractMe #MentalHealth #Trauma #Anxiety #MightyPets #Depression #ExaggeratedStartleResponse #intimatepartnerviolence
#TraumaticBrainInjury #NeurologicalVisionImpairment
#ParoxysmalHemicrania
#PostTraumaticParoxysmalHemicrania
#PostconcussionSyndrome
#ChronicVestibularMigraine
#ComplexPosttraumaticStressDisorder
#ComplexRegionalPainSyndrome
#Osteoarthritis
#ADHD

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I'm new here!

Hi, my name is SurvivingCRPS. Thank you that I can feel less isolated & alone by being part of this community. I've had crps for 6 years now & sadly it has become progressively debilitating. However.....I'm now starting to research the spiritual root for this horrific disorder & would love to share anything that maybe helpful to others as we walk together on this painful journey. I'm also researching which aromatherapy oils may ease the pain ....as you all know, pregabalin has awful side effects...so trying as many alternatives as possible ....diet, herbs, sound therapy ...will send links etc as I'm able....little steps....toward hope & healing.

#MightyTogether #ComplexRegionalPainSyndrome

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Weather Can Play An Important Role In Our Disabilities And Chronic Illnesses

I wouldn't have been surprised to see Dorothy and Toto flying around outside last night, considering the strength of the storms. Multiple tornadoes were in the area and there were frequent lightening bursts but no sound. That's what sucked, because of course then the power kept going on and of repeatedly ⚡️like something out of the 1931 movie Frankenstein 🎬.

Bless his furry little heart, our freakin awesome 10 yr old Russian Blue 💙 Niklas Squishy Kitteh knew something was up way before it hit, and stuck by me because of my CPTSD and head injuries from the assault 8 yrs ago. He watches over my awesome hubby too, who suffers from chronic rheumatoid and osteoarthritis.

Yep, the adult me disappeared. When I wasn't curled up on the couch looking out of two windows on high alert in alarmed anticipation of a humongous clap of thunder that would scare the crap outta me, I was in a cautious tip-toe stop motion move to the kitchen.

Seriously, what in the blue blazes happened to me? I mean, I know but it kinda pisses me off that it can grab hold of me like that.

Now here's the other thing with this. Any time we have a drop in barometric pressure, my head injuries take over, especially the Post-Traumatic Paroxysmal Hemicrania. Here on The Mighty, the group is listed as Paroxysmal Hemicrania. All I can say is that I hope others don't experience what I do with my face and head swelling when it flares. The anxiety with that plus the sensitivity of the ears and shock from the thunder... the fact that you can't escape any of it.

I know this was all forced on me, I never asked for any of it but being pissed off won't do any good. It's a ridiculous waste of emotion right? There's no point in resentment. I just get tired of always saying that. Tired of always saying ♡pick yourself up and keep going♡.

Then I take a deep breath, pick myself up and keep going. 🧠Survive To Thrive🕊

#MightyTogether #MightyPets #DistractMe #MentalHealth #Trauma #Anxiety #Depression #ExaggeratedStartleResponse #intimatepartnerviolence
#TraumaticBrainInjury
#NeurologicalVisionImpairment
#PostTraumaticParoxysmalHemicrania
#ParoxysmalHemicrania
#PostconcussionSyndrome
#ChronicVestibularMigraine
#ComplexPosttraumaticStressDisorder
#ComplexRegionalPainSyndrome
#Osteoarthritis
#ADHD

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Allow Yourself The Courtesy Of A New Perspective

It's often easier to be kind to others than to ourselves. I've had to work hard at retraining my thought processes to accept myself as a work-in-progress. I think in visuals. One which has really helped me is to see it as rewiring the circuitry in my brain in order to recognize myself in a new light.

#MightyTogether #MightyPets #MentalHealth #Trauma #Anxiety #Depression
#TraumaticBrainInjury
#NeurologicalVisionImpairment
#PostTraumaticParoxysmalHemicrania
#PostconcussionSyndrome
#ChronicVestibularMigraine
#ComplexPosttraumaticStressDisorder
#ComplexRegionalPainSyndrome
#Osteoarthritis
#ExaggeratedStartleResponse
#intimatepartnerviolence #ADHD #Tinnitus

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