Have you experienced severe pain but normal blood work results?

Hi ,

Oh the frustration of mismatched lab results and symptoms! I know how confused and irritated that makes me feel, on top of the symptoms I’m having.

I have what is known as “seronegative RA,” which means that I do not have elevated levels of rheumatoid factor and therefore “look great” on paper. But looking great and feeling great can be two very different things, and sometimes looking great on paper doesn’t even translate to looking good in person, with swollen joints and a face pale from the pain.

While it sounds like you sometimes do show elevated rheumatoid factor levels, you may find you can relate to this article I wrote about having seronegative RA: https://rheumatoidarthritis.net/living/seronegative-rheumatoid-factor/. Be sure to check out the comments as well, as lots of people have shared their experiences of labwork not matching their symptoms.

Unfortunately, sometimes misleading labwork requires us to advocate for ourselves with our doctors. If you’re still in a lot of pain, the current treatment plan may not be adequate (or it may need time to work, as some meds can take months to reach full efficacy). Be sure to share with your doctor that you are still in a lot of pain, as they may want to tweak your treatment plan, either temporarily or for longer-term.

I am wishing you all the best as you contend with the pain. It makes everything so much harder. Thank you for sharing what you are going through, and I hope my experience and the experiences of any other commenters is validating of what you’re going through.

Rooting for you,
Tamara

Hey, thank you so much for taking the time to share your experience and ask this great question. As someone who was diagnosed with RA 15 years ago in my teens, I have dealt with the same exact thing. From what I have learned and what my rheumatologists have told me, bloodwork is only one piece of the puzzle they look at. There can be many other factors for why you are in pain such as; weather changes, dietary and lifestyle, food intolerances and allergies, stress, lack of sleep, and so on. It may be a good idea to keep a daily tracker of all your symptoms throughout the day and how you feel from when you wake up till you go to bed, and note what may have occurred that day or what you ate for instance. That can help find a pattern, if there is any, and you can rely on your notes to your doctors. I have had times when I thought I was doing amazing because I felt amazing, but my blood tests showed that I wasn't. Other times I would be in pain with a flare, and one marker like the CRP (C-Reactive Protein) would be low, but other markers like Sed Rate high and vice versa. Hang in there, this can be a confusing journey for sure. Please don't hesitate to reach out if you need anything else and check out the 'Symptoms' tab, if you haven't already.

https://rheumatoidarthritis.net/symptoms/joints-swelling-tightness-or-stiffness/

Hey, thank you so much for taking the time to share your experience and ask this great question. As someone who was diagnosed with RA 15 years ago in my teens, I have dealt with the same exact thing. From what I have learned and what my rheumatologists have told me, bloodwork is only one piece of the puzzle they look at. There can be many other factors for why you are in pain such as; weather changes, dietary and lifestyle, food intolerances and allergies, stress, lack of sleep, and so on. It may be a good idea to keep a daily tracker of all your symptoms throughout the day and how you feel from when you wake up till you go to bed, and note what may have occurred that day or what you ate for instance. That can help find a pattern, if there is any, and you can rely on your notes to your doctors. I have had times when I thought I was doing amazing because I felt amazing, but my blood tests showed that I wasn't. Other times I would be in pain with a flare, and one marker like the CRP (C-Reactive Protein) would be low, but other markers like Sed Rate high and vice versa. Hang in there, this can be a confusing journey for sure. Please don't hesitate to reach out if you need anything else and check out the 'Symptoms' tab, if you haven't already.

Hi Tamara, thank you so much for your reply! It does help to hear you struggle with this too. When I said labs, I should have been more specific. I meant to refer to the quarterly-ish blood tests that show inflammation, like Sed Rate and CRP. I am seropositive for high CRP (over 200) but no RF Factor. Anyway, the experience you shared hit the nail on the head. We must advocate for ourselves with our Rheumy’s. I do try to but it’s difficult. Mine is nice enough but always rushed and it’s difficult to tell that my hand joints are swollen because my fingers themselves are swollen.

Despite having normal Sed Rate and CRP, my hands are painful and swollen, my shoulders feel like there are knives digging into them and my back is so bad it hurts to do activities. Despite this, I still try to walk, do housework and yoga, all of which make the pain worse. *sigh* I just don’t know what to do next. I have been on 9 biologics and they all failed. I’m now on Sulfasalazine which worked to bring my bloodwork to normal levels but the pain is intolerable.

Pain meds, like Advil and Norco, work to take the edge off but my doc doesn’t like me to take pain meds.

Sorry to go on so long! I appreciate you listening.

hugs and spoons,

Kim