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Signs My Doctors Missed #EhlersDanlosSyndrome

I won the lottery on genetic diseases, all diagnosed later in life. Sarcoidosis, Raynaud’s Syndrome, Autoimmune Arthritis & now Hypermobile Ehlers Danlos Syndrome.

The symptoms of Ehlers Danlos were there from the start. My Drs never added them up and missed these symptoms:
◼️HYPERFLEXIBLE ▪️Bend thumb to wrist
▪️Crisscross fingers
▪️Hyper flex elbows
▪️Jaw pops out of socket opening mouth
▪️Can put my hands flat on the floor bending over
▪️Knee caps dropped often
▪️Was teased because I ran strange
▪️Hips sublex out of alignment easily
▪️Mild scoliosis
▪️Clothing & fabrics irritated my skin
▪️Scars are sensitive to touch
▪️Can’t wear necklaces or heavy clothing on my neck
▪️Sharp bone pain when young
▪️Smooth, soft, stretchy skin
▪️Horizontal scars across the back
▪️Wounds slow to heal

My maternal grandmother, mom, daughter and son all have these same symptoms. I am the only one diagnosed thus far. What used to be a novelty as a child now causes great pain.
#EhlersDanlosSyndrome #IBS #HyperFlexible #TMJ

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Seasonal Changes Causing a Flare Up

Here in the Northeast US we are known for our seasons, especially our beautiful foliage in autumn. This is my favorite season but the fluctuating temperatures — cold in the morning and night and hot in the afternoon — is giving me a major flair up. Sharp shooting pains in my joints, lower and upper back, and especially the sides of my neck and shoulders. I feel like I literally have the world on my shoulders. All the rain this year impacted my pain as well. Sunshine usually helps me out a bit with vitamin D and the warmth on my limbs.

Does weather impact your pain? What type of weather causes you a flare up?

#Fibromyalgia #ChronicPain #Scoliosis

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I’m new here!

Learning to cope with scoliosis, chronic back/neck pain, chronic fatigue, migraines, anxiety, depression, fibromyalgia, and unknown autoimmune disease while raising two young children.

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9 months post operation # spinalfusion #Backsurgery

Hello i do hope you all are well. I needed to vent and get some advice!
In my case I'm not so lucky.
Before surgery my symptoms of pain were shooting down my legs, my lower legs and feet going numb, my facilities were slightly reduced(was peeing and pooing about 50% less then before) not able to walk to the bathroom,
. My procedure was said to take about 4.5 hours, it took 7.5 hrs they said nothing to my husband so he was stressed out. Then going into the Operating room we had been told it would be MINIMALLY INVASIVE,.
SO they replaced 2 disks l4 & l5 and open nerve facet holes, and do the fusion...
I had L3-L5 fusion but i believe something went wrong while in surgery for me. There are a few reasons why I think this.
My fusion was January 3 2023. When i woke up after SURGERY along my left side that was not cut open on , it felt as though i had a chemical burn along my side and my hip down to my knee, a large painful lump also on the left side my non opened side, the 2 incisions on my back not clean cut incisions, looks like a damn 5 year old cut my open and not even centered properly , then 2 other incisions 1 about pinky length the other about 6 inches long. Post operation now 8.5 months. I am left partially immobile about 50% of the time, imagining at 2 months showed that i had a NEW crack in L5. Still severe pain, my whole groin is f------numb. I am a married wife and mother. I have never been one to sit and do nothing I'm going crazy from pain. My husband tries to understand and at first had no understanding what i was going thru bc his back surgery was a success back in 2006. But it was just a disc removal.
I am at a loss of what to do. I need to find an attorney, but getting discouraged the few i had talked with would not take my case due to their large case load they already had


# A hard journey

I was diagnosed with scoliosis in 1999. Received disability. I am now 74. Now hEDS plus comorbidities from this disease. I am losing connective tissue in my spine. It is hard to breathe though my lungs though lungs are heathy.
I am bedridden except to be able to get to bathroom and kitchen. Thankful for that. My pain is still uncontrolled. In 2006 I attempted suicide. I was a hospice nurse. I put 10 expired fentanyl patches on my body. Those patches were needing to be destroyed. Over the years, I stockpiled those expired patches. ER doctor said it was a miracle I survived. You would think I would have died. Sadly I survived. It pissed me off I had failed.
Recovery was at the Utah University Hospital then 6 months in a skilled nursing facility.
I am contemplating going to Sweden for doctor assisted death with dignity.
I am not religious. I have no issue with suicide.
I am researching Doctor assisted death with dignity in Sweden.
I do not believe suicide a sin
I have uncontrolled pain
I can’t do this anymore.


An interesting development

#Doctors #Scoliosis Hi. How is everyone today? Before we officially go into fall I would like to share a interesting development that has quietly taken shape. I was looking through my test results & noticed one that was tucked in there. My spinal scans from the spinal specialist & whats hypocritical of him is when he told my mom that everything is normal. Yet the report said otherwise. They noted a dextroscoliosis of 26 degrees in my neck, a 13 degree levoscoliosis in my upper spine & a marked coronal imbalance measuring 18.1cm or 7 inches. So what does this mean? Well, a few things it means a rare form scoliosis called cervicothoraric scoliosis in combination with degenerative signs in the cervix & a laryngocele with other findings on brain scan this would point to a little known condition called klippel feil syndrome. BUT WAIT! there is one very profound problem nothing in my genetics mentions any gene related to klippel feil. however, this caught my attention. There is a locus on 8p22.2 that is known to cause laryngeal malformation. This condition is autosomal dominant. My mom has complained about hearing loss & a stooped posture in her neck for years that isn't being cured by chiropractics. Now I'm starting to wonder if my degenerative disc disease of the neck & these new findings will point us toward a new diagnosis. Unless it's just a spinal injury but considering the development of a zenkers diverticulum & prior pinched nerve causing dizziness (radiculopathy). It's also associated with jaw disorders like micrognathia of which I have.

Anyways, everyone. . .have a great fall & wonderful new year. ;)


I’m new here!

Hi, my name is Meo86. I'm here because I would like to meet other people to help me with my struggles I have and I would love to help other too.

#MightyTogether #Anxiety #Depression #PTSD #ADHD #AutismSpectrumDisorder #Migraine , scoliosis and domestic abuse

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