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Pain, pain and more pain 😭

It’s hard to get an appointment with rheumatologists since they need a referral from another doctor. Well, I went to one clinic and specifically told them that I need a referral for a specialist (rheumatologist) and they said ok. So I went in…

My journey so far

They said they needed to do bloodwork before they can release a letter and to which I had to pay, of course. It cost me almost $400. After that, they said they would call me with results. A week later I got no call. I decided to call them. The office manager told me that my bloodwork was negative so they can’t give me a referral. I said that I told them that from the get-go, that was why I went there, and did it, and paid what they asked, and now they won’t give me the referral?? And I know that there is really no definitive test for PsA or RA, but you can also be seronegative.

Pain and other symptoms

Up to now, I’m suffering from joint pain and stiffness every day, brain fog, and new swelling on my left shoulder joint. My eyes are so dry that puncta plugs had to be put in. I cry almost every day from the pain and being excessively tired. 😭 It’s hard to sleep when you don’t know how to position yourself in the bed and you so badly want to sleep, but you can’t. I work every day and still try to cook meals. I just want to be ok. I need meds for this so bad.

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Comments

  • GCM
    5 months ago

    If the blood work didn’t not include testing if you are HLAB27+, perhaps you could be tested? (A large number of PsA patients are positive.) I have PsA, Uveitis, and Ankylosing Spondylitis and am positive for HLAB27 and negative for the RA factor.

    (If things get very bad, you can go to the ER…they -may- refer you to a Rheumatologist?) I was referred by an Opthomologist when I went in for the first time with a severe case of Uveitis (I thought I had “pink eye”). This doctor referred me for labs to test for HLAB27+ and sent me to a Rheumatologist. This was in 1992 when I was first diagnosed with PsA. Wishing you all the best!

  • Beth V
    5 months ago

    It’s so frustrating. The current opiod problem in America seems to have every doctor thinking that someone complaining of pain that they can’t point a finger at the cause is faking or exaggerating. It took me almost 20 years to finally get diagnosed. I hope you find the care you need and deserve.

  • MarthaGrowdon moderator
    5 months ago

    Arg! I can hear your frustration and your pain, KCDont. It’s maddening that your doctor’s office said you had to get bloodwork done to get a referral and then refused you the referral even after getting bloodwork done! You aren’t alone in struggling to find the best care. Many of our members report having to get several opinions before they find a doctor who provides them the attention and care they deserve. You might find some insight in these two articles on the topic of making sure you get the best care: https://psoriatic-arthritis.com/living/breaking-up-with-your-doctor/ and https://psoriatic-arthritis.com/living/healthcare-team-work-you/. We’re here for you.
    -Martha
    Psoriatic-Arthritis.com Team

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