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:
- Rheumatoid Arthritis Pain
- Do Rheumatoid Arthritis Patients Have a Low Pain Threshold?
- Rheumatoid Arthritis Pain in the Twilight Zone
- Does Rheumatoid Arthritis Pain Really Hurt That Much?
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I’ve 1/2 jokingly said all Drs. should have 2 exp the actual disease they are treating 4 atleast 1 day b4 they can practice.lol
I’ve heard this more than a few times. It would work, but there’s no way to implement it. I wish they would at least read from a patient’s viewpoint what the disease is like. These tools do provide a way to give a window into that experience.
Wonderful idea. Wish my RA doc would actually incorporate this into their website.
Maybe he can at least put up a link to one of them?
Yes, I too forget the parts of the days when I am better. I seem to always only recall the worst pains. Great idea to keep track somehow. Like yesterday was really a bad day, most of the day. Today, after the initial stiffness, the pain level is down. Maybe I slept better or something. Would be good to keep track of all of that. Thanks for a Great Post.
Thanks Barb. I think Karla has done a great job. I just posted part 2 a few minutes ago!