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Positive RF, negative Anti-CCP but increasing pain

Hi all. Help!!!

I’m in constant pain. Hands, joints of fingers and thumbs (both sides) wrists (both), elbows (both), feet. My RF at the last count was 149, the time before it was 98 which was about 18 months ago. X-rays came back negative a couple of weeks ago and I’ve just heard my anti-ccp antibodies are negative.

I cry every day with pain. I sat on the stairs this morning and sobbed. I’m taking paracetamol, ibuprofen and dihydrocodeine prescribed by my GP and I carry a hot water bottle around with me just for some relief.

So what now. My GP mentioned a referral to a rheumatologist but sent me for anti-CCP’s first because he said rheumatology is difficult to get into at the moment.

I have a feeling I’m going to be left hanging with no diagnosis and no idea where to go next.

Anyone else been in my situation?

Thank you x

  1. , I'm sorry that you are dealing with so much pain right now. It's good that your GP has been proactive in ordering tests to monitor how you've been doing over the past 18 months. Sounds like you've been dealing with this for a long time.

    The best thing you can do is to get that referral to a rheumatologist. Many times a rheumatologist is able to consider factors beyond blood tests to determine a diagnosis. Once you get an appointment with the rheumatologist, ask the office manager to place you on a cancellation list. That might help to get you into see the doctor sooner if someone else cancels an appointment and a slot opens up.

    Some people feel a bit of relief from pain with ice and others with heat. Hopefully you can receive an accurate diagnosis soon and get started on treatment to reduce the disease activity. Please know that we are here for you while you go through this process. Best wishes, Lisa, RA Team Member

    1. I agree with Lisa. Rheumatologists are especially trained to examine your joints and hear what your body is saying to make a determination about disease activity They almost never rely exclusively on blood work. I wish the very best. Keep hanging on.

      Rick - moderator

      1. Thank you both. In a lot of pain today. Especially my left hand which is odd as I’m right handed so you’d think it would be the right one.

        A couple of friends have mentioned fibromyalgia. But it’s definitely my joints.

        1. So sorry you're feeling this way. One of the lessons most of us learn during the early part of this disease is that we must be our own advocate. By that I mean that we must be pro-active in getting medical treatment and not rely solely on others.
          Fortunately, I have excellent health insurance which allows me to go straight to a specialist without a referral.
          For those without this kind of insurance, that is, those who need a referral: you need to be proactive and keep on top of your PCP/GP. If you don't have an appointment with a rheumatologist scheduled within two working days, call the rheumatologist's office yourself and see if you can make the appointment yourself with the understanding that your PCP will be referring you. They may turn you down, but you may also reach an understanding office person who might help by calling your GP's office on your behalf to get the ball rolling.
          Know this: if the pain is that bad, there's an option of seeking treatment at an ER.

          1. Thank you so much for sharing not only support for the community, but actionable steps others can take that are helpful. This insight is great - really appreciate your contribution! - Reggie ( Team Member)

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