Scoliosis

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Scoliosis
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Here's what it was like

Maturing (at least somewhat) as a mother of children who turned out to have some disabilities, I grew along with my children, and like almost all parents, I turned to “the experts” when I needed help with day to day life with my kids. Who doesn’t ask the experts? I found out in 2002 that our oldest son had Asperger’s syndrome, which is what would now be referred to as Level 1 autism spectrum disorder. I realized fairly quickly that I too had Asperger’s that had been missed, since in the 1970s and 80s nobody was looking for female children with autism because they were supposed to not exist.

As time passed, all my children were diagnosed with learning disabilities, and more were diagnosed with autism, in addition to mental health issues. These diagnoses led to participation in therapy, medication checks, social skills groups, occupational therapy, cranialsacral therapy and chiropractic care. Later, trials of ADD medication. The younger two also had multiple X-rays for supposed scoliosis. In the midst of these activities, we did actually have a life. I’m so glad we were able to homeschool!

In short, there were many challenges my children experienced that I did my best to help them with. Over time, with three children, I believe I am counting accurately when I state that in total they went through ten psychological and educational evaluations. Each of these found something that was causing problems.

Evaluations usually include the tests that were used, what the results mean, and the recommendations the clinician has for your child. Most of the time in the report, there is much information to take in. Recommendations often include more than one type of therapy, be it physical, speech, mental or occupational, socializing recommendations, a referral to a child psychiatrist for medication, and probably other guidance that you, as the parent, are supposed to follow. After all, you have just asked the expert! It would be a waste of time and money to not put the recommendations into action, right?

The message most parents get is that they should probably—just—panic.

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I'm new here!

Hi, my name is nanayaabizz. I'm here because I was looking for support groups and people who experience the same disabilites that I experience. just wanted new friends and some support.

#MightyTogether #Scoliosis #Anxiety #RheumatoidArthritis #BackPain

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Feeling defeated again due to my health

Feeling defeated again. As usual my health has the final say always winning. I have to take another semester off from school. My dad has to help me get dressed, in the bathroom, and every time I get up. I’m also using a walker and 38yrs old. My back is way worse. I’m very still with limited range of motion due to severe sharp shooting stabbing pain. Doc called in a steroid for me. If not helping I’m suppose to go to the ER.

I couldn’t take this class in the summer and can’t take it this fall. I have this class and 1 more to finish my program in child development online. Then I will finally have my bachelors degree. In 2010 I had to drop out for having emergency back surgery due to Cauda Equina Syndrome. Then 10 months later in 2011 I had a 2nd back surgery due to severe congenital #SpinalStenosis . 2013 went back to school at the local community college for early childhood education. Graduated with associates degree 2016 going part time and another medical leave. 2022 decided to finish my bachelors degree online. Now that I’m this close with only 2 classes left I have to take more medical leaves. If I can’t do these practicums I will need to switch majors again. I was looking so forward to graduating May 2026.

Now I’m not sure when I’ll be done with my bachelors degree. It’s been a long road. Even if I can complete these 2 practicums I’m not sure what I’ll be able to do in this field. Not only is my spinal stenosis worse, I have #DegenerativeDiscDisease #Arthritis and now #Scoliosis all in my lumbar region. My cervical spine is bad also but not as bad.

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I’m new here!

Hi, my name is eLSeth. I've been progressively getting diagnosed with different conditions, almost seems like I have my Pokemons of conditions, and I'm trying to find ways to better take care of myself to improve my quality of life.

#MightyTogether #ADHD #AutismSpectrumDisorder #Scoliosis #ehlers-DanlosSyndrome

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I’m new here!

Hi, my name is IonaOldroyd, I have diagnosed Autism, ADHD, ARFID (Avoident restrictive food intake disorder), Anxiety, and Scoliosis, I haven't been formally diagnosed with depression or OCD yet, and have an undiagnosed chronic illness (I'm being investigated for Ehlers-danlos syndrome), And I'm looking to learn how to live as normal and a fulfilling life as i can with all these things

#MightyTogether #Anxiety #Depression #AutismSpectrumDisorder #ADHD #EatingDisorder #OCD

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Body reaction is a total surprise due to trauma !

Recently , I discovered that my scoliosis symptoms that I've been dealing with for a whole year isn't even existing physically, but it's psychological.. honestly I felt like I've been hit in the gut when I self discovered such a thing , knowing that the severe pain in my jaw , shoulders, neck and back is chronic stress due to my childhood trauma and years of tension , pain also neglect hit me hard
I'm a girl who faced SA for straight 8 years ; since I was 8 this started with a complete stranger who was actually a neighbour.. parents divorce didn't help either while having such a big tensioned house environment , I decided from the bottom of my heart recently to start listening to my body and soul , taking the first baby steps into healing but I know that my trauma wasn't easy and it still affects me with daily life basic communications , and I know that healing is also a pattern full of ups and downs that need support and understanding.. I hope I could build a community, a safe one to guide me we could help and support eachother ❤️ spreading love and kindness 🫶🏻
#PTSD #Anxiety #PostTraumaticStressDisorder #ChildhoodDisorders #AnorexiaNervosa #MentalHealth #CheerMeOn #Depression #Scoliosis #CheckInWithMe

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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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