Arthritis Facebook Summary
Last Wednesday, I was the designated expert on the HealthCentral Facebook chat about RA and arthritis. It was a very successful event, with lots of questions and interaction. It was so successful, in fact, that we going to do it again in another couple of months.
For those of you who weren't able to be there, this is a summary of the topics brought up in the chat.
We started with some basic questions about arthritis in general. I explained that it is an umbrella term for over 100 different types of musculoskeletal diseases that affect the joints in the tissue around the joints. We talked about the differences between RA and osteoarthritis, one being an autoimmune disease and the other commonly known as "wear and tear" arthritis that happens as we grow older or after an injury.
Next up was the topic of the myths that surround arthritis. The biggest of them all is that it is an old person's disease. This is simply not true. RA primarily affects people in their 30s and 40s and there are 300,000 children living with juvenile arthritis in the US. Although osteoarthritis does generally happen as we grow older, it can also develop approximately 10 years after an injury. That means that if you injure yourself at 18, you may develop osteoarthritis before you're 30. Another myth is that you can't do anything about arthritis. In fact, osteoarthritis can be prevented. As well, the damage and disability that were inevitable for people with RA in the past can now be prevented for many. It is a common misperception that you can get arthritis from cracking your knuckles. You can't, but it can stretch the tissue in the knuckles causing discomfort. Also, it's annoying for your surroundings!
Next came questions related to living with RA and pain. We had an interesting question about how to access information about clinical trials and a community member helped me find the website with that information. One of the participants was also curious about the new medication Xeljanz and whether it has been proven to work. I answered that clinical trials showed that it worked well enough for the FDA to approve it for general use. However, it's only been on the market since February, 2013 so it's too early for me to have heard much feedback from the community. Another participant had recently changed rheumatologists and was having some problems. I generally encourage our readers to get second — and even third — opinions until they find a good rheumatologist. It can also be a good idea to enhance your self advocacy skills to build a better relationship with your rheumatologist.
Another question was about the most common questions I'm asked. There are three general categories. The first is people who have just been diagnosed and are feeling overwhelmed. I usually direct them to a couple of places on the RAHealthCentral site to help them get started: our basics of RA area and a summary post that collects links to a number of SharePosts useful to people who are new to RA and, ANother category is about treatment and worries about what inflammatory arthritis can do to your body. The good news is that there are currently more medications available than ever before and more people than ever before go into remission or experience low disease activity. Still, more work is needed to help everyone who lives with inflammatory arthritis.
Another common worry is the impact of various types of arthritis on your ability to live your life. I've lived with RA for over 40 years and have learned that you find a way to live life anyway. One of the primary hurdle is to living your life is the fatigue that accompanies RA and living with pain. I shared tips on how to build and maintain energy, as well as the wisdom of the Spoon Theory and working within your limits.The third common hurdle is pain management and the difficulties people experience getting adequate pain control. I recommended asking for a referral to a pain specialist, as well as looking into our pain management area for more tips.
Other questions revolved around diet for RA — in my experience, it seems as if people have different triggers for flares. When it comes to identifying what those are. I recommend that you keep a symptom diary for 3-4 weeks where you write down what you eat, the medications you take, the weather, your activity levels, symptoms, etc., as it may help you establish a pattern.
I also got a question about exercising with RA. It was a great opportunity to share our big project for this year's Arthritis Awareness Month: our RA and exercise video and infographic. When we created this video, we felt it was important to show different levels of activity for different levels of RA, to help people get physically active within their limits.
If you want to read all the questions and answers, check out the RA/arthritis chat on the HealthCentral Facebook page. Thanks to everyone who participated. See you next time!
Lene is the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain.