Seth D. Ginsberg began his 20-year career as a health advocate at age 13 when he was diagnosed with a form of arthritis called Spondyloarthritis. Since then, Seth has evolved into a passionate thought leader and social entrepreneur in the global healthcare conversation. He believes that all patients with chronic disease deserve the best access to care, and that it is everyone’s responsibility to participate in patient-centered research to unlock the clues needed for better health outcomes in the future. Seth spends his energy engineering that future. At 18, Seth helped pioneer the online patient community for others like himself who were suffering with arthritis, co-founding CreakyJoints. The Global Healthy Living Foundation is the non-profit parent organization of CreakyJoints, which Seth and CreakyJoints co-founder social entrepreneur Louis Tharp, created in 2004. Follow Seth on Twitter: @SethSaidSo.
What should we know about arthritis patients struggles with sleep and alertness?
One of the most distressing features of osteoarthritis (OA) and autoimmune forms of arthritis, such as rheumatoid arthritis (RA), is the impact on one’s ability to fall asleep and then get restful sleep. Studies have shown that both RA and OA patients experience sleep fragmentation, meaning that they are awakened from sleep frequently. When you don’t sleep well, it creates a cycle where the next day you may experience more pain, followed by another night of poor quality sleep. Of course, pain itself from OA and RA can drain one’s energy, both physically and mentally, as the day advances. Via our ArthritisPower research registry, which collects Patient-Reported Outcomes (PRO) measures to assess various aspects of health, such as pain interference, physical function, fatigue and other health data, we know that, on average, ArthritisPower members have worse sleep quality than 92 percent of the U.S. population and more fatigue than 83 percent of the population. Perhaps these numbers are not surprising given that most ArthritisPower members have either RA or OA or, in some cases, both.
What are the biggest misconceptions you’ve seen with arthritis patients about sleep?
It may seem counter intuitive, but getting energized via exercise promotes better sleep at night. Not only does exercise increase flexibility and strength, it has also been shown to reduce pain and help reduce fatigue. Some people living with arthritis may shy away from exercise, thinking it too difficult and fearing that it will cause additional pain or muscle soreness. In fact, moderate exercise keeps people moving and feeling better. It strengthens the muscles around joints as well. One of our CreakyJoints members is a Yoga for Arthritis instructor and she’s a great example of how staying active can help reduce pain, increase flexibility, and sleep better. Of course, it’s important to speak with a physician before starting any exercise program to make sure it’s a good fit. Personally, I do light cardio at the gym for a minimum of 30 minutes each visit, at least three times a week. And I make sure to stretch in the morning and at night, to keep my own creaky joints limber.
How do arthritis patients often find relief when they sleep?
In addition to exercise, some quick tips to help arthritispatients get better sleep include the following:
Practice Better Sleep Hygiene – Get into a relaxing routine that promotes sleep. For example, avoid caffeine, sleeping during the day, and stimulating activities (computer screens, working, eating) before bed. Instead, make the bedroom a quiet, dark retreat.
Nighttime Treatment – Determine if treating pain at night(e.g., via warm baths or medication) would allow for better sleep.
Consider Therapy – Work with a professional or join a support group to help identify the triggers that may be causing poor sleep, which can include pain, anxiety or depression. Therapists can also train
patients to distract themselves from stimulating thoughts that prevent slumber.
Tell us some good news for arthritis patients.
Now more than ever, arthritis patients can prioritize and direct arthritis research, including how sleep issues may impact quality of life and overall health. Created by CreakyJoints in collaboration with the University of Alabama at Birmingham, and supported by a multi-year, multimillion dollar investment by the Patient-Centered Outcomes Research Institute (PCORI), ArthritisPower is the first ever patient-led, patient-centered research registry for arthritis, bone, and inflammatory skin conditions. ArthritisPower is part of PCORnet, the National Patient-Centered Clinical Research Network, a large, highly representative, national network for conducting clinical outcomes research. The ArthritisPower mobile and desktop application allows patients to track, measure, and share their symptoms and treatments outcomes while simultaneously participating in arthritis research via informed consent. ArthritisPower Patient Governors (all volunteers) serve as gatekeepers for researchers seeking to access registry data or solicit the community to participate in unique, voluntary studies. Patient Governors also help to prioritize research requests and will help to disseminate research findings to members of CreakyJoints. To learn more about this innovative research registry and symptom tracker, visit www.ArthritisPower.org
Where can we learn more about arthritis?
CreakyJoints®, now in its 17th year, is the go-to source for more than 100,000 arthritis patients and their families world-wide who are seeking education, support, advocacy and patient-centered research. At CreakyJoints, we offer an encyclopedic amount of information on all forms of arthritis. In addition, we feature many different bloggers who share their various personal experiences living with arthritis – from all stages of disease management. CreakyJoints also hosts regular, live Twitter Chats and offers members the opportunity to influence health policy by participating in our advocacy work on the state or federal level. This summer, we unfurled a newly redesigned website, which enhanced members’ ability to navigate our extensive content. To join CreakyJoints (for free), visit www.CreakyJoints.org
Notably, we are also a fully realized research organization. In addition to our flagship research project, ArthritisPower, we also recently launched (in partnership with The RAND Corporation) BeTTER SAID, a coalition of patients, patient advocates, researchers, physicians/surgeons, and health system leaders examining strategies to improve hip and knee joint replacement device safety. Its overall objective is the development of an engaged and informed cohort of patients and stakeholders in the BeTTER SAID network that can participate in the design, implementation and dissemination of comparative effectiveness research findings about arthroplasty (joint replacement). CreakyJoints frequently collaborates with other research registries within PCORnet as well.
Best sleeping advice you use?
I am almost OCD about my sleep hygiene. The new iPhone software allows a night feature that decreases the white light emitted from the device, which I have set to automatically do at 6 PM (even during the summer). I also wear special amber tinted glasses (affectionately referred to as the “nerd glasses” by my wife, but I don’t care!) when thumbing through social media and reading the newspaper on my phone at night. When it’s time to tuck in, I wear my eye mask, which I regularly change because after a while, it starts to smell. When I get up to go to the bathroom at night (and because I drink so much water during the day, this happens 1-2 times), we have night lights strategically placed in the bathroom, so turning isn’t necessary.
Lastly, since my mind usually races at night, I try to listen to really boring astronomy audio podcasts, with a sleep timer, so that the mere attempt to keep up with the discussion forces me into a deep and