Spondyloarthritis

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    Imposter Syndrome

    Most days I feel like I am an imposter in the chronic illness space. My bloods/xrays are not that ba, but bad enough to show somethings wrong. But then why the pain, fatique, brain fog, blackouts, nerve pain, stiffness. If I'm not that bad, why do I feel miserable? The thought that this can get worse is overbearing! I look normal, I'm generally a helpful, talkative, able human being. So I feel like an imposter. I feel like I am not sick enough and don't belong. I have to fight to get heard by my docters, my friends and family don't understand. I'm tired of explaining. I now know that I don't absorb medications, THIS SUCKS! All I want is to be pain free, have energy, sparkle and enjoy my life. I'm in limbo as I can do neither whole heartedly. I am not deathly ill, neither am I capable to have a normal everyday life without the constant reminder this is hard, this is painful, this is exhausting. So yes, I feel like an imposter.

    Don't get me wrong, I am so incredibly greatful for the things I can do and that I am not gravely ill. I am so incredibly thankful that I am not as bad off as a lot of people on this platform. All I want is for my current symptoms to be treated so I can continue with a normal life.

    So yes I have imposter syndrome and I don't know how to overcome that! Not healthy enough to belong, not ill enough either!

    #ImposterSyndrome #PsoriaticArthritis #Spondyloarthritis #nervepain #ChronicDepression #PTSD #CPTSD #generalizedanxiety #InappropriateSinusTachycardia #AutonomicDysfunction #atrialfibrillation #costochondritus #discbulges #JointHypermobilitySyndrome

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    Does anyone here also suffer from av node reentry atrioventricular tachycardia?

    I have been diagnosed with this on top of my psoriatic arthritis and my research shows that it can occur in 49% of people with psorthritis. How have you been treated for this and has any of you had a heart ablation to fix this? I am getting one on the 8th and just not sue. #Ablation #AtrioventricularHeartDefect #Spondyloarthritis #HypermobilitySyndrome

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    #Tachycardia Need some motivation

    Second time in ER this wkd. I'm feeling tired and just over it. No one seems to know what is wrong. #AutonomicDysfunction #HypermobilitySyndrome #PsoriaticArthritis #Spondyloarthritis #Anxiety #CPTSD #Depression

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    Raynauds and Heart Rate

    It's very cold in SA at the moment which is not helping my Raynauds at all. My heart rate has gone as low as 35 today due to the cold. Has anyone else with Raynauds experienced low heart rate? #RaynaudsPhenomenon #PsoriaticArthritis #Spondyloarthritis #cold

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    Does it ever get better?

    I'm normally quite a positive person, full of hope and have a go getter personality. But the last year I find myself struggling to remain hopeful. It's hard to hope and look forward to things when with no warning at all you can flare. I find the winter is especially challenging for me. While writing this it is 1 degree here in Joburg South Africa. I just woke up and my body feels like it went through a boxing match. I have always been able to pull myself up, push through the pain and ignore all my feelings, but this has led my body to say no, and now I have autoimmune issues. So how does one stay positive and hopeful when you want to allow yourself to heal and rest, yet you want to conquer the world and be bright, sunny, inspiring, energetic? It's like I have a split personality in my mind. The person I know I can be and once was and then this new me, the exhausted, in pain, and depressed me. I hope it won't always be like this, and I hope that things will change. But right now......it sucks!! #CPTSD #Anxiety #Depression #PsoriaticArthritis #Spondyloarthritis #ankolysingspondylitis #HypermobilitySyndrome #RaynaudsPhenomenon

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    Cold fingers #HypermobilitySyndrome #Spondyloarthritis #PsoriaticArthritis #raynauds

    Just felt like sharing the frustration of cold fingers.....

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    Any advice for neuropathic burning in the feet early in the morning? #Neuropathic Pain #Spondyloarthritis #PsoriaticArthritis

    I wake up every morning with burning feet and it's worse when I put pressure on them, ie. just putting them flat down on the mattress or floor. Any ideas on how to prevent this....

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    Pain

    I’m in pain and sleep evades me tonight...
    Long awaited rheumatologist appt Friday....praying for EDS diagnosis and some help.
    My MRI shows bulging disks at C4-5, C5-6, C6-7 with disk degeneration, unconvertbral joint spurring and foraminal stenosis.
    Cervical Lordosis which is where the spines curves opposite of normal.

    Disk bulges at C7-T1, T4-T5, T5-6, T6-7, T7-8 with degeneration.

    Disk bulges at L4&5 with degeneration.

    I’m taking Tylenol, ibuprofen, gabapentin (which I hate), and Robaxin.

    Sometimes it’s enough.
    Tonight, it is not enough.

    #ChronicPain #ChronicFatigue #POTS #EDS #Spondyloarthritis

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    Motivation to keep going #Quotes #Motivation

    Recently these two quotes have really been helping me these days:

    1. They can't see your demons, but they can see the face that conquered them

    2. Don't wait to feel motivated for self-care

    #Selfcare #Depression #MentalHealth #Fibromyalgia #Anxiety #Motivation #Quotes #Spondyloarthritis #Arthritis

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    Never giving up #studying #Disability

    Being diagnosed with spondyloarthritis has been life changing. In a way the years of searching for a diagnosis and being misdiagnosed has come to an end. It also has brought with it intensive treatment and strained financials. I have been on unpaid sick leave for months being too sick and in too much pain to contribute much. I feel guilty and depressed all the time for not contributing enough to the finances. During this diagnostic and treatment journey I was studying my master's degree part time. I have deferred and gotten so many extensions. I considered even giving up entirely. My supervisor phoned me yesterday to tell me not to give up and that she wants me to complete my master's. I have a huge research protocol submission due tomorrow and I'm struggling but going to try my best. If I just take it a day at a time I'll get there. I am not going to give up. I read someone where once that if you take care of the little moments, the years take care of themselves.

    #masters #University #Part -timestudies #Spondyloarthritis #Fibromyalgia #Depression #hopeful #struggling