Scoliosis

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Scoliosis
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Living With Chronic Pain and No Diagnosis: The Loneliest Kind of Illness # Invisible Illness # Medical Gaslighting #Undiagnosed

I’m 47 and have been living with chronic pain and profound fatigue for years now. I rely on a wheelchair for things like shopping or walking the dog. I can’t stand for long or walk very far. Everyday things—things I used to take for granted—are now major obstacles.

Despite countless tests, appointments, and even private consultations, I still don’t have a clear diagnosis. Most recently, a private doctor suggested possible hEDS (hypermobile Ehlers-Danlos Syndrome) or POTS (Postural Orthostatic Tachycardia Syndrome), but also said that “even if it is one of those, there’s not much we can do.” He encouraged me to just accept things.

But I can’t accept the idea that I’m just stuck like this without even a name for what I’m going through.

I’ve heard “medically unexplained symptoms” more times than I can count—and every time, no matter how gently it’s said, it feels like I’m being dismissed. Like I’m too complicated, too messy, too inconvenient. Like my pain is a mystery no one wants to solve.

And the thing is, I do have documented conditions: a hypermobile coccyx, Bertolotti’s syndrome, stage 4 endometriosis, scoliosis, and spinal nerve compression that required surgery. These aren’t theoretical. They’re real. They’re in my records and in my body. I understand how central sensitization and the nervous system can amplify pain—but I also know what’s happening to me is not just in my head.

I work, and I fight to keep working, because it gives me structure and identity. But the effort it takes is immense. I use pain relief sparingly so I can’t be told I’m psychologically dependent on it—if anything, I avoid it unless absolutely necessary. Yet when pain relief is discouraged without alternatives, it feels like I’m being asked to endure without tools or support.

What I want—what so many of us want—is not a cure. It’s a name. Something that says: Yes, you are seen. You are believed. What’s happening to you is real. A name opens doors. A name brings access. A name brings peace.

If you’ve ever felt dismissed or invisible because your symptoms didn’t come with a neat label, I want you to know—you’re not alone. I see you. And I’d love to hear from others who are walking this same uncertain, exhausting road.

Thank you for reading.

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☆ " Hello Mighty Fam... " ☆ #Update #Depression #PTSD #Anxiety

° " So Thing's Have Changed At Work I Now Will Be Working 12 Hour Shift's.. Last Night Was My 1st Try... Came In At 2pm And Left At 2A.M. The Day Was Busy Later At Night Peaceful. But My Sleep Is Messed Up Now.. But Everyone Keep's Telling Me To Think About The $$$... And I'm Like Thing More About My Body Handling This... I Have Cerebral Palsy & Scoliosis,Chronic Pain.... So We Will See These People Just Would Rather Overwork Me More Than Give Me A Proper Raise. They Think That I Would Stop Coming Into To Work If I Have Gotten A Raise... Sigh... I Will Keep U All Updated On This New Adventure... Until Then I Love You My Mighty Family...." ° Sincerely, ● Skaoi Kvitravn ● #Workaholic

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My rib cage is crooked and I think my spine is bent?

Hi! I am diagnosed with ME/CFS and my connective tissue kinda sucks (I could probably get diagnosed with HSD if not heds, but I haven’t pursued that atp)

I was lying flat on the floor the other day (as one does) and noticed my entire ribcage is crooked, as in the left side sticks out noticeably more. So then I started researching and it said it could be an indicator of scoliosis. So I did some wacky maneuvering to try to get my spine on camera to look at, and it looks a bit curved to the left in the upper part of my back in the picture. But maybe that’s the lighting?

I plan on probably making a doctors appointment regardless, but would love to hear what other people think who know more about this than I would lol

#MyalgicEncephalomyelitis
#Scoliosis ?
#ChronicFatigue
#Dysautonomia
#HypermobilitySyndrome

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Hi

I'm new here, I have dysautonomia and suspect I have POTS, and I also have scoliosis and chronic pain. I'm struggling with my health right now and just trying to get through high school so I can go to university. I love baking, DnD, and learning (I'm very excited about English and History) and I'm looking for some community online as there aren't a lot of disabled teens in my area. Nice to find a place to give and get advice!

#POTS #Dysautonomia #Scoliosis #ChronicPain #ChronicFatigue

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J Pouch surgery experiences? I need j pouch after total colectomy w ileostomy has anyone had this surgery?

I had toxic megacolon that required emergency open surgery total colectomy w ileostomy. I found out that the j pouch surgeries to reconnect my colon need to be open invasive surgery cutting open a large scar from abdomen to pubic bone from the colectomy. The colectomy and ileostomy was the most painful experience, the surgery was over 12 hrs w complications during and after. I can’t imagine reopening this scar and all the scar tissue around it 3 more times. I’ve had 8 spinal reconstruction surgeries in 10yrs w titanium screws, plates & rods including replacing my tailbone - those surgeries hurt less than the colectomy. Has anyone had j pouch after colectomy? I’m worried about pouchitis and other infections bec I have a primary immunodeficiency disorder? I read ppl have 8-12 bowel movts after surgery? How long does recovery take? Is the pouch connected and working after first surgery? Is life every normal w a pouch?
#CrohnsDisease #DegenerativeDiscDisease #Colectomy #Ileostomy #jpouchsurgery
#Pouchectomy
#colorectalsurgery #Scoliosis #PrimaryImmunodeficiency #InterstitialCystitis #demyelinatonsyndrome #demyelineatingsyndrome

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Gentle reminder that whatever you say to yourself in your mind comes out and affects you even if you don't mean it to

I definitely need to work on how often I vent frustration with the body I have been given. Every so often I have to stop and readjust my thoughts for the better, thanking my body for all it does to try to do what I want.
It does the best it can and I need to appreciate what it can offer.

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #AmplifiedMusculoskeletalPainSyndrome #bedbound #BoneSplints #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #gallstones #HypothyroidismUnderactiveThyroidDisease #Eczema #Grief #Hypersomnia #HighBloodPressure #JuvenileRheumatoidArthritis #Insomnia #Lymphedema #PosturalOrthostaticTachycardiaSyndrome #PTSD #Psoriasis #PsoriaticArthritis #Psychosis #PanicAttack #PanicAttacks #plantarfasciitis #MentalHealth #MightyTogether #MajorDepressiveDisorder #MemoryLoss #Migraine #musclespasms #MultipleAutoimmuneSyndrome #RareDisease #RheumatoidArthritis #SuicidalThoughts #Scoliosis #ShinSplints

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Hello Christmas!!

So many new things happening as of late.

Humera helped not a bit. The first month and a half felt great and it reminded me the good of being human. Five months later and my rheumatologist put me on a new medicine called Enbrel(amongst my 55 other meds I take for my many conditions).

I took my first dose on Sunday but I feel as bad as if I wasn't taking any meds whatsoever.

Years ago my EDS meant I had to learn to walk more carefully so I didn't dislocate my joints hundreds of times a day and using my tendons wrong, bruising them left and right. Now I have to relearn and the pain is simply horrific.

And my whole digestive system is a mess of course. Swallowing ten times just to get one bite down really takes any good out of food. Constant nausea and vomiting doesn't improve anything whatsoever.

And a hundred more symptoms of misery makes my huge mountain of existing even heavier.

Yeah I am blessed in many things but health or ease of existing are most definitely not on any of the lists.
Only a very cursed body that does work hard to try to do its best in aiding me, poor thing. Thankful for the small bit of good it tries to do while also wishing I could trade bodies with a healthy person for at least one day.

If only!😕🫤😔

Alas, I wait still for my new meds to start working with fingers crossed and tears streaming down.
Thank heaven that I at least have a few doctors that are trying!
Such a long 29 years of devastating suspense!!!

May the holidays bring the light and hope you deserve this season. And if not, may these Christmas lights on my family's tree lift your soul for even a small bit of time ✨️✨️✨️

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #AnkylosingSpondylitis #bedbound #BoneSplints #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #CheerMeOn #Upallnight #IfYouFeelHopeless #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Eczema #Fibromyalgia #GastroesophagealRefluxDisease #Grief #gallstones #HypothyroidismUnderactiveThyroidDisease #Hypersomnia #HighBloodPressure #Headache #JuvenileRheumatoidArthritis #Insomnia #Lymphedema #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #PsoriaticArthritis #Psychosis #plantarfasciitis #PanicAttack #PanicAttacks #PTSD #MentalHealth #MightyTogether #MightyPets #Migraine #MemoryLoss #musclespasms #MultipleAutoimmuneSyndrome #RareDisease #RheumatoidArthritis #SuicidalThoughts #Scoliosis #sciatica #ShinSplints #Sleepwalking #MajorDepressiveDisorder #nightterrors

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