Psoriatic Arthropathy

victoriafinney
victoriafinney Online Community Member Posts: 17 Connected
edited November 2018 in Rare, invisible, and undiagnosed conditions
Hi all.
I have been suffering with joint pain for about six or seven years and got diagnosed with PsA about seven months ago.
I am STILL waiting to be seen by rehumatology after all of that time due to my GP failing to action two referral requests from dermatology and in that time have become wheelchair bound.
Im not going to lie. I feel let down. Angry. In pain due to no treatment of my condition.
I suffer flares very frequently and each one leaves my body more damaged than the last. Nearly every joint in my body is now affected and I cannot straighten one leg at all.
I have no Idea why. Or why I can't straighten my leg.as i have never Had a scan of any kind done, so I have no idea whats going on with my body. All I know is I hurt every day. 
No doctor has explained the condition to me. Everything I know I have had to look up. Lots of things make sense now but a lot is very confusing.
And most of all its scary. Everything I read terrifies me. im only 38. I don't want this. I hate being treated as if I have some form of brain injury. I can think just fine! Its my body letting me down! Not my brain!
I hate not being able to do as much as I used to for my adored child. I wish it would all just go away.
Most of all I am lonely. I have not met any other adult sufferer in person. I find facebook too adversarial in my pained state. Everything grates.
I would love to chat to others with this condition!

Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Hi @victoriafinney
    Is Psoriatic Arthropathy the same as psoriatic arthritis?
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,761 Championing
    Hi @victoriafinney, how are you doing?
  • victoriafinney
    victoriafinney Online Community Member Posts: 17 Connected
    Yes it is the full medical name for psoriatic arthritis ? Im good Pippa thankyou. Just about to pop some pills!
  • AimeeCheeks
    AimeeCheeks Online Community Member Posts: 3 Listener
    I’ve had my Ankylosing Spondylitis mistaken for Vitamin D deficiency. Two years later I’m in agonising pain and have fusion accuring in my sacroiliac and lumbar region. So damage done! Purely by chance I saw another GP and she immediately recognised that I has something more serious than Vitamin D deficiency. I was sent to a rheumy, MRIs all within weeks. I’ve been told there are some fabulous new biologics that can really make a difference to quality of life whilst slowing down the disease. Hopefully, you are a candidate for this treatment. Good luck!

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