Latest
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.
2 reactions Complex Regional Pain Syndrome
Join the Conversation on
Complex Regional Pain Syndrome
Complex Regional Pain Syndrome
17.5K people
0 stories
3.8K posts
About Complex Regional Pain Syndrome
What's New in Complex Regional Pain Syndrome
All
Stories
Posts
Videos
Latest
Trending
Post
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]
2 reactions •
1 comment
Post
See full photo
🫥♿️Invisible Disabilities Are REAL!♿️🫥
INVISIBLE DISABILITIES ARE REAL!
Just because you can’t see visible signs of chronic illness or disability does NOT mean that they don’t exist. Nor does it mean that they are imagined, fake, or “all in your head”.
#Disability #ChronicIllness #ChronicPain #InvisibleDisability #MentalHealth #FunctionalNeurologicalDisorder #EhlersDanlosSyndrome #Anxiety #Depression #Asthma #Fibromyalgia #ADHD #BackPain #Arthritis #RheumatoidArthritis #ComplexRegionalPainSyndrome #Endometriosis #IrritableBowelSyndromeIBS #Migraine #RaynaudsPhenomenon #Sarcoidosis #ChronicObstructivePulmonaryDisease #MightyTogether
14 reactions •
2 comments
Post
See full photo
♿️🫥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
23 reactions •
6 comments
Post
See full photo
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
3 reactions •
1 comment
Post
I'm new here!
Hi, my name is Lysa4444. I'm here because of the following:
#MightyTogether #ComplexRegionalPainSyndrome #Anxiety #Depression #Migraine #Fibromyalgia #AutismSpectrumDisorder #PTSD #ADHD #OCD #EmptySellaSyndrome #OccipitalNeuralgia #hashimoto 'sThyroiditis #Asthma #Agoraphobia #GERD #IBS
3 reactions •
1 comment
Post
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.
2 reactions •
1 comment
Post
See full photo
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!
5 reactions •
4 comments
Post
I'm new here!
Hi, my name is Itsawrap. I'm here because
#MightyTogether #Anxiety #Depression #Migraine #PTSD #EatingDisorder #CRPS
4 reactions Post
I'm new here!
Hi, my name is Itsawrap. I'm here because
#MightyTogether #Anxiety #Depression #Migraine #PTSD #EatingDisorder #CRPS
4 reactions 