Online Pain Management for Rheumatoid Arthritis | Rheumatoid Arthritis Warrior

Online Pain Management for Rheumatoid Arthritis

By Karla Fitch

What is online pain management for RA?

Often, it’s enough to deal with the effects of rheumatoid arthritis every day without having to worry about passwords and privacy and figuring out how to track something that you and your doctor already know. Or is it?

Studies show that pain is often undertreated, and some suggest that only 1 in 4 patients receive adequate therapy. The question then is “whose fault is that?” It’s easy to point to health care professionals and prescriptions that just don’t work, but the responsibility for receiving adequate treatment also lies with the patient. A big part of visiting a rheumatologist is preparing ahead of time to get the most out of a visit. It is up to patients to make sure that a doctor understands pain, symptoms, and how these things affect quality of life.

The big problem: Pain is subjective and very difficult to communicate. But we can make this communication easier by tracking or journaling the pain and symptoms. That’s where online pain management software comes in.

Online pain management software provides patients with a consistent set of measurements that can be used to quantify pain. Most RA patients are familiar with the question “On average, over the past ___ days, how would you rate your pain on a scale of 1-10?” Before using pain management software, I would hazily think back to any particularly painful periods and try to average this out over time. I often forgot the good periods in between and the moderate day-to-day pain that I’ve grown used to. Long story short, I provided a less-than-precise answer.

With online pain management software, patients can be prompted to log in regularly and rate pain and symptoms. Some sites even provide body maps where you can identify specific joints and they all provide reporting functions that allow you to distill information from a specific period into a simple report that you can hand over to your rheumatologist. In the three sites I evaluated, I also discovered “sharing” capabilities that allowed me to give doctors and family members read-only access to my pain journal. This last feature has been extremely helpful to me in communicating what I go through each day with my loved ones.

Privacy & security in online pain management

 Before you do anything else, read the site’s privacy policy. The link to the privacy policy is typically found on the site’s home page at the very bottom. You should read something like this: Company X will not intentionally obtain, use or disclose a user’s personal health information without the user’s authorization, except under the following circumstances…”  They should state that they don’t release your personal health information associated with your identity without your consent unless required by law. A possible exception: companies may still release information that is not associated with your identity for technical upgrades of the system. Also, a list of symptoms experienced by patients using a certain drug to fight RA could be released to a pharmaceutical company as long as the patients remained completely anonymous.

Finally, you should check for two important security cues once you have created an account and logged into the site for the first time. The first cue is whether the site is being transmitted via secure protocol. To determine this, look at the address bar on your internet browser. If the address starts with “https” your information is being encrypted before it is passed through the internet. The second cue to look for is the small lock icon at the bottom of your browser application window.

About the guest author: Karla Fitch is an RA warrior, mom, and artist with a small crochet business. She can be contacted via e-mail at ibscrochet@gmail.com

Next time in Part 2, Karla shows us just how online pain management works, exploring three popular sites for online pain management.

Other posts about Rheumatoid Arthritis pain:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also https://www.rawarrior.com/kelly-young-press/

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