Sjogren's and Pain

How Common is Pain in Sjogren's Patients

In follow up to last week’s post about fatigue, I also wondered how common pain is among Sjogren’s patients. Personally, I almost always have a headache and during bad flares my whole body would feel a burning pain with tingling in the extremities.

I found a 2014 study from the National Institute of Health that explored this question. This particular study separated the test group by seropositive (Sjogren’s patients with positive blood results for either SSA and/or SSB) and seronegative patients. It found that 65% of Seropositive patients experienced chronic pain (defined as daily pain for greater than 3 months). Moreover, 75% of the seronegative patients (Sjogren’s patients with negative SSA and SSB results) experienced chronic pain. While 35% of seropositive patients reported moderate or severe pain (5+ out of 10 on the pain scale), 68% of seronegative patients reported moderate or severe pain. Around 37-40% of both groups reported neuropathic pain, which is pain caused by damage or disease affecting the nervous system and can include sensations of burning or pins and needles. 57% of the seronegative patients also scored moderate to severe on the fibromyalgia scale, while 39% of the seropositive patients did so.

About 65-75% of Sjogren's patients suffer from chronic pain.

Overall, chronic pain was reported by more than half of the Sjogren’s patients in the study. Neuropathic pain was the predominant type of pain in patients with moderate or severe pain. Interestingly, patients with negative SSA and SSB results also reported more severe pain in this study.

From my personal experience, pain was never mentioned much by my rheumatologists. They also don’t offer much in terms of pain management. With more than half of Sjogren’s patients suffering from chronic pain, it would be nice if the medical community at least offered resources to Sjogren’s patients on pain management.

If you suffer from chronic or neuropathic pain, please let me know your experience and how you currently manage it. I’m still figuring that out myself.

For the text of the full study, click here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4137866/