Ankylosing Spondylitis

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Ankylosing Spondylitis
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    Community Voices

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    Community Voices

    Undiagnosed neuropathic pain.

    I turned 26 this year and have been suffering from chronic pain since I was around 19

    Lots and back and forth with multiple specialists and doctors appointments has eventually lead me to a diagnosis for my hip pain - I have hip dysplasia that has somehow gone un-diagnosed since birth.. I have been told I need to have PAO surgery to correct this.

    However, alongside this hip pain I have been suffering from many neurological symptoms which seems to have been swept under the rug since my DHD diagnosis. I am still chronically ill underneath my hip pain and no one seems to be doing anything about it.

    My nuerological symptoms include the following:
    - Sickness/nausea
    - Dizziness
    - Hyperosmia
    - Neuropathic pain in my legs, arms, shoulders
    - Complete numbness/change of sensation in my shoulder blades and between T7-T12
    - Numbness that radiates down my left leg
    - Muscle spasms/ spacsticity in legs
    - Bladder issues
    - Chronic fatigue
    - Balance issues
    - Cognitive issues such as thinking and concentrating
    - Occassional blurred vision/ vision changes
    - Migranes

    I have been seen by and dismissed by numberous doctors and consultants, no one can seem to figure out what is wrong with me. Some of them have actually accused me of making my symptoms up.

    I have seen 2x Rheumatologists that investigated Arthrtitis and Lupus, both concluded that there was nothing wrong with me at all whatsoever.. I have a positive ANA and Anti-dsDNA but still no diagnosis. Discharged by both of them with no further action.

    I am currently under the care of an Orthopaedic Surgeon (for my hip) who seems to think my symptoms point toward Fibromyalgia but obviously this would be diagnosed by a rheumatologist and I have already been discharged by two.

    I am currently on a waiting list to see a neurologist. I have been on this waiting list since May and I am lead to believe I will be waiting quite a few months yet.

    I feel incredibly alone in my journey. Everyone I know who is my age have no idea what it is like to deal with chronic pain, let alone the burden of an undiagnosed illness. Every time I attempt to talk to anyone about my ailments, people are dismissive, don’t understand or are simply uninterested.

    Can anyone offer any advice ? I feel hopeless. I have no support. 😢

    #ChronicPain #DevelopmentalDysplasiaOfTheHip #DegenerativeDiscDisease #Fibromyalgia #MultipleSclerosis #MyalgicEncephalomyelitis #ChronicIllness #Migraine #Lupus #Arthritis #CervicalSpondylosis #AnkylosingSpondylitis #Neuropathy #PeripheralNeuropathy #AutoimmuneDisease #BackPain #ComplexRegionalPainSyndrome #Undiagnosed #RheumatoidArthritis #sjogrens

    6 people are talking about this
    Community Voices

    Chronic Pain & Passions

    I am recovering from severe anemia due to PCOS, and since then I’ve dealt with chronic pain in my back,legs and knees. I’ve had chronic pain for years buts it’s gotten worse and I’m still being tested for a couple of autoimmune diseases.

    With all of this happening, I’ve had to stop doing what I love and am very passionate about because everything is unmanaged.
    With those who struggle with chronic illness, how do you keep doing the things you’re passionate about. The things that create joy in your life? It’s really affecting me not being able to do the things I like. #ChronicPain #AutoimmuneDisease #PolycysticOvarySyndrome #AnkylosingSpondylitis #Anemia #MentalHealth

    6 people are talking about this
    Community Voices

    Working again

    <p>Working again</p>
    12 people are talking about this
    Community Voices
    Community Voices

    Aug 18th

    Today iv been weak in my hips, it feels hard to support my own body up, my hip area is super tender and irritated, I also started my period today witch adds to the pain and tender weakness in that area.
    My tummy has been irritated all day, no painless moments and my whole nervous system feels on over drive... Anyway it's still a good day, iv gotten some things done and am feeling happy
    #AutoimmuneDisease #autoimmune #Fibromyalgia #AnkylosingSpondylitis #EhlersDanlosSyndrome #sore

    4 people are talking about this
    Community Voices

    The light

    No One ever tells you how hard life really is.
    They fill your head with premeditated worries about neverending bills and jobs you will hate
    They tell you to get used to being tired and forget about the plans that you made
    They say growing up is all about being honest while learning how to be fake.
    They don't tell you about the thoughts you think when you come home at night
    Washing your hands and face of today's lost dreams,
    You stand crying for a minute because you can't help but think
    while the forbidden tears roll down your cheeks
    About how hard life really is.
    It's more than what they told us. Atleast it is for me.

    Because with the cards that I was dealt i had no choice but to see,
    the dark side of this world before it ever saw me.
    And I can't be the only one that sees
    There's more to this then what they say

    It's feeling numb but knowing pain
    It's constant guilt and endless shame
    It's dark thoughts on sunny days
    It's feeling lost when you know the way
    It's wanting to speak with no words to say
    It's wanting to forgive but your hearts full of hate
    It's wanting to forget but your minds full of rage
    It's dreaming of being free from a life time of pain
    It's a constant game
    Of you against yourself
    And you against the world
    An invisible war that you can never be prepared for

    Because they can't ever put it into words about how hard life really is
    Because it's losing hope when hopes all you had
    It's one step forward two steps back
    It's getting ahead just to get caught in a trap
    So life can catch you quicker and take all that you have
    Faster than if you had stayed in the back
    Because that's the way life really is
    You've never been ahead, you're just on a different path
    And I'm not being selfish but this is all that I have
    To offer to those who have been caught in this same trap
    Who have been lost and who have been afraid and who have been speechless and been ashamed
    If it means nothing to noone except for you I want you to know
    that it's okay. Just let go
    But they don't tell you THAT that much do they?
    They leave out the fact that you have fought and fought and fought and though you are wounded, you are still standing
    They leave out the fact that you would not have been taught life's greatest lessons without this constant changing
    They forgot to mention that behind every dark corner there is a light that's STILL gleaming,
    Waiting to be noticed to remind you to never stop dreaming
    Never stop believing,
    because even though this world can be deceiving do not believe that your life has no meaning
    Because it does
You are that light.
    You are the very flickering flame that someone needs
    You are the voice that speaks to a soul in need,
    You are the light
    You are the hand that holds a broken piece to someones heart that's needing peace
    You are the smile that changes a persons day, you are the friendly face that pauses the pain
    You ARE the light
    You are the eyes that see the purpose in others when they can't seem to see
    You are the energy it takes to help them believe that just like you, you have got to believe
    That you ARE the light
    You are the phone call that could save a persons life
    You are the friend that could pull out the knife - in the back of someone who's losing sight
    of life's greatest purpose because they've been too afraid to fight
    The battle against what the world wants us to believe is right
    So if you feel like your losing your purpose I hope to God that you heard this
    Because you are most certainly worth it no matter how bad that you're hurting
    I hope you know your important, I hope you know that you're loved
    I hope you know that you're not alone and that you are always enough
    I hope you know that you're strong, I hope you know that you got this
    I hope you remember all the battles that you won and you fight this
    I hope you stay with me, and that you never forget that you are that light.
    And most importantly I hope you learn to love your life.

    4 people are talking about this
    Community Voices
    Community Voices

    Traveling with chronic pain

    I'm 18 and iv been though alot so far, but it's always been my dream to travel, I live in Australia and am dieing to one day exsplore as much as I can! My idea is in a van :) but I struggle with believeing I'll make that dream come true.. who has traveled with chronic pain before?
    #Fibromyalgia #AnkylosingSpondylitis #ChronicIllness #Autism #ADHD

    5 people are talking about this