One of my favorite things about meeting other people living with rheumatoid arthritis (RA) is that we almost always have an instant connection – an immediate level of closeness that ordinarily would take time and effort to build. And while the source of this connection is a shared understanding of a secret world neither of us asked to be a part of, I always find it comforting that there are others out there who really understand what it’s like to live with RA.
RA pain and fatigue: unique to an individual
One thing I think we all truly understand when it comes to living with RA is the true impact of pain and fatigue. Pain isn’t just a nuisance in our daily lives. Fatigue isn’t just being a little bit tired. Pain and fatigue may be invisible, but they can be all encompassing. Pain and fatigue can have a huge impact, not just on your physical health but also on your overall quality of life.
Personally, I think one of the most frustrating realities about living with pain and fatigue is that it is totally subjective. While my fellow patients living with RA certainly have a good idea where I’m coming from, the only person who truly understands my current levels of pain and fatigue is me. This can make it a challenge to accurately communicate how I am feeling to my doctors. There’s no blood test for pain; no x-ray will illustrate fatigue.
Measuring RA pain and fatigue is important
But the good news is, doctors are starting to recognize that the subjective feelings of patients are important – regardless of what the test results say. A Dutch study recently published in Arthritis Care & Research suggests that subjective changes in pain and fatigue can strongly influence overall patient satisfaction with their current therapy.
The study consisted of 210 patients with early RA, all of whom had moderate or good responses to their treatments according to the criteria of the European League Against Rheumatism (EULAR). But despite objective clinical responses, 36% of the patients still rated their health as “not improved.” Previous studies have also shown that patient-perceived subjective responses don’t always correlate with objective measures.
Finally, scientific evidence that test results and symptom experience may not align?
I think this is a result that many of us may be able to relate to – where a doctor may say the treatment is working but you don’t feel any better. To attempt to figure out the reason for this disconnect, researchers carefully analyzed the data from the Dutch study. In addition to objective measures of treatment effect, subjective evaluations also included a health survey, which asked questions about bodily pain, physical functioning, vitality, social function, and emotional and mental health.
The results of the analysis demonstrated the overall impact of pain and fatigue on individual patients. While all patients in the study showed objective clinical measurements of improvement, that did not necessarily equate with self-reported improvements in health. Instead, researchers determined that changes in pain and fatigue strongly influenced whether patients self-reported improvement.
The study’s conclusions suggest that it might be worthwhile for healthcare professionals to monitor and address pain and fatigue in addition to and independently of measurements of disease activity. The researchers suggest, “in patients with persistent pain or fatigue, despite well controlled disease, complementary pain treatment strategies as well as interventions specifically addressing fatigue might be beneficial.”
These findings are ones that I can certainly relate to in my own personal experiences with RA. Hopefully future research will continue to take a patient-centric approach and attempt to understand all the ways that RA truly impacts our lives.