Sjögren's

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    Outside Looking In

    <p>Outside Looking In</p>
    2 people are talking about this
    Community Voices
    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
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    Community Voices

    New scans

    Tomorrow morning I go in for new CT scans of my jaw and neck to check my salivary glands. The ones under my jaw and under my ears have been continuously swollen the last few years, but the ones on the right have started hurting. Given the amount of pain medication I take for other things, I am a little worried what this pain could be. So I’m hoping for the best but a little concerned. If any of you have some positive thoughts to send my way I would appreciate it. #SjogrensSyndrome

    2 people are talking about this
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    Community Voices

    Decided to Share for Those Who Needed to See It

    Tired and in pain (better with the early meds) and working on my art and writing. Finding a job is up in the air at the moment but I am still looking for remote writing jobs. Or data entry. Whatever. I want to be normal. But my old "normal" is gone. Family (ie: my mother) cries over it.

    I hate it when people cry...especially over things I cannot change. All I can do is find the right combination of coping skills, meds, doctors, and therapists, to fare better in this world.

    I'm a sensitive person. Less so now but it's a part of me that will always remain. Hence why I'm looking into writing jobs and posting my writing everywhere...not just on Tumblr.

    It feels like I'm "always sick" and yeah I am. I'm fighting a battle...(nerd moment: like when the Autobots fought for eons against the Decepticons) but it's worth it. It's worth it to try.

    Besides...I may not see the world but I have my family and my love and his family. They are MY world. They are the light in MY life. Their love gives me fuel to keep fighting.

    #BipolarDisorder #borderlinepersonality #Fibromyalgia #RheumatoidArthritis #SjogrensSyndrome #PTSD #Anxiety #Menieres #Osteoarthritis #DiscDegeneration

    3 people are talking about this
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    A Scream Into the Void

    I used to be able to do so much more. Now I'm in bed a lot due to pain and fatigue. I want to work but I have soooo much going on so it would have to be from home.

    How do I learn to be OK with my obstacles? It's been over ten years since I went down this rollarcoaster.

    Maybe things will never change. Deep down I know they will...that there's still a spark of the person I was deep down inside.

    I'm just frustrated. New problems: back pain that is turning me into a hunchback.

    I just want my old "normal" back :(

    I am trying my hardest.

    But I always left therapy feeling like it was never good enough for my therapist.

    I'm not severely ill so I can do this.

    And I"m trying...

    sigh.

    ever the people pleaser.

    BTW, I have a new therapist now. I am slowly opening up :) Just trying to cope with all these new challenges. Needed an abyss/void to scream into xD

    #Fibromyalgia #rheumatoid #Arthritis #BackPain #Osteoarthritis #DegenerativeDiscDisease #sjogrens #Neuropathy #weakness #Menieres

    5 people are talking about this
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    Community Voices

    I didn’t know if I was going to post here, I read lot’s of different stories posted and they’ve helped tremendously. I could use some advice or thoughts. I’m 26 with fibromyalgia, Sjögren's syndrome, raynards syndrome, rheumatoid arthritis, and hyperglycemia. I also deal with ptsd, anxiety and panic attacks, acrophobia, and bpd. I’m also very alone and going through some serious emotional pain as well. My supposed to be partner who blames me for everything! Literally he is in complete charge of everything but blames me for money issues. It makes absolutely no sense on his reality to me. I beg him for help and attention and I get more insults and anger. I’m really to the point of wanting to just die. And he doesn’t care about that at all. I feel absolutely alone and I’m overwhelmed with fear and sadness. He also attacks me from time to time. He says it’s my fault and I usually end up apologizing for the whole situation. I’m lost and idk what the hell to do! Please some advice 🥹❤️

    14 people are talking about this