New diagnosis and terrified!

Itsmsk1
Itsmsk1 Member Posts: 2
edited 28. Nov 2023, 14:08 in Living with arthritis

Hi all,

I was diagnosed with psoriatic arthritis last week after months of struggling to get up and down stairs and having a very swollen unusable finger. I am absolutely terrified. The last week has been hell and at times I’ve felt as though I was going to die because I was sure the pain I’ve been experiencing had been mis-diagnosed.

My mornings currently consist of agony trying to get out of bed and struggling to walk due to widespread pain all over my body (muscles, joints etc).

Please tell me this is normal and that there is a rainbow somewhere as I’m not sure if I can take much more…

Comments

  • Ellen
    Ellen Moderator Posts: 1,851

    Hi @Itsmsk1

    Welcome to the online Community I'm so glad you have found us you are clearly having a very tough time. I understand form your post that you have a very recent diagnosis of Psoriatic Arthritis and are understandably 'terrified' being in 'agony'.

    Being newly diagnosed is a frightening time for most people so these pages have been written especially to help those in your position:

    https://www.versusarthritis.org/about-arthritis/newly-diagnosed/

    I wonder just how much information you have been given about Psoriatic Arthritis so am also going to attach this:

    https://www.versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/

    I also hope you have been given some treatment options or even started on some medication to start to control some of the symptoms you describe.

    I'll leave you now to meet some of our members.

    Finally I wonder whether you would find it helpful to call our helpline? A supportive ear to talk through your situation might really help.

    Very best of wishes

    Ellen.

  • frogmorton
    frogmorton Member Posts: 30,032

    Hello @Itsmsk1

    I am so sorry you are having such a terrifying time. I am not surprised either that you are feeling like you do.

    I hope you are on something for the Arthritis now? Which by the way can be agony that word is perfect and unlikely to have been misdiagnosed I think sadly. I hope you are taking a DMARD like sulfasalazine or Methotrexate? or steroids to get the symptoms under some control?

    I can't promise you a rainbow I wish I could, but hopefully when the meds get into your system they should start to dampen down your symptoms and life should improve. It can take several weeks, but life should be better. Unfortunately it's not like taking a course of antibiotics and job's done - our treatments need to be long-term.

    My advice is to come on here chat to us lot, get informed, but above all know you are not alone anymore - we understand. I am sending you huge ((()))

    Toni x

  • jamieA
    jamieA Member Posts: 837
    edited 16. May 2022, 14:51
    https://community.versusarthritis.org/discussion/57594/new-diagnosis-and-terrified

    Hi @Itsmsk1

    I fully recognise the description you've given - I think I could have written your first two paragraphs when my PsA first appeared, though with me my PsA started with a swollen knee and rapidly went downhill from there. I know we are all different regarding the ability to endure pain but for me it wasn't like anything I've ever felt. For me the 3 months of sulfasalazine and 6 months of methotrexate didn't work and only prolonged the pain I was in. I ended up having multiple steroid injections over that period of 9 months which mostly alleviated the pain for 4-6 week stints. It was only when I was put onto a biologic treatment that life returned to a degree of normality.

    Hopefully you've a sympathetic GP and rheumatologist. I think if there is one thing I've learned it's not to be passive and accept what medics determine as a course of action. They don't feel the pain you are in and you need make sure they are aware of the scale of it.

    For me the biologic I'm now on made a huge difference and I'm now able to do many of the things I couldn't for almost a year after diagnosis. I'm not back to my old self but I am functional. I still have issues caused by PsA but at least I'm functioning again and have ditched the heavy duty painkillers I was on.

    One thing I've been doing since my PsA started in 2020 is to keep a diary detailing treatment, medication and appointments as well as how I am feeling - what joints are aching/sore.

    I hope you get some treatment that helps soon.

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