In October 2015, I had the opportunity to contribute to an article titled “What Arthritis Pain Feels Like” for EveryDayHEALTH . I just recently looked back at some of the things I shared in that piece and unfortunately, not much has changed. Here’s an excerpt.
Rheumatoid arthritis can be like the old “box of chocolates” adage — you never know what you’re going to get, according to blogger Katie Stewart, 34, of Austin, Texas. Stewart was diagnosed with rheumatoid arthritis when she 23 years old. “Sometimes it feels like burning, other times it feels like throbbing — throbbing so bad that you can’t think about anything else,” Stewart explains. “There are times I’ve almost considered wanting to cut off a foot or a hand, the pain is so excruciating.”
But there are also good days when the pain seems to ebb. “When I feel good, I do yoga, run, and go about life like I don’t know what RA is,” she adds.
Regardless of how you’re feeling on any particular day, make positivity your constant. Seriously! Do yourself a favor, and try to stay positive. Every time you feel like you’re going to hell and back, try to remind yourself that “this too shall pass” and eventually, it will.
Here’s to hoping y’all have a little more ebb in your life.
In 2016, Sanofi and Regeneron conducted a survey of 1,000 Rheumatoid Arthritis patients in the US, with hopes of getting a better understanding of patient needs. The survey, titled Honestly RA, resulted in data that can help others understand what those of us with RA are feeling. While I’m typically skeptical of pharma backed initiatives like this, the outcome hit pretty close to home. Below are a few highlights.
8 in 10 of us experience pain daily or multiple times a week
2/3 of us say our pain keeps us away from daily activities and celebrations, even after treatment
We are frustrated when others can’t understand our pain
On average, we’ve tried 4+ prescription medications in the last 5 years
Can I get an AMEN here??!? This all rings true to me.
Does anyone else with Rheumatoid Arthritis (RA) have trouble sleeping? The crazy thing is, it’s not the pain that keeps me up at night. At least I don’t think it is the pain, or perhaps I’m partially immune to the pain after 12 years of living with RA. Could it be side effects from my medication? Stress? Work? Life? One thing is for certain. The more I think about sleep, the less I sleep.
I’ve tried reading, watching TV, taking melatonin, general relaxing, meditation, the HeadSpace app, warm baths before bed, drinking warm milk like a baby… Heck, I’ve even tried Lunesta which actually works, but I’m afraid of getting addicted or sleepwalking.
So I’m reaching out to my spoonie friends for help. What sleep remedy works best for you? I’m willing to try just about anything.
I just realized it had been almost a year since I’ve sat down to write a post. A year? Seriously? Where does time go?
Since my last post, I moved to Austin, Texas. It’s almost as weird to type right now as it is to recite my new address over the phone to the mail-in pharmacy. I often forget my 312 area code was replaced by 512. Although I love Austin to pieces, sometimes I still want to shout, I’m from Chicago!… But I suppose that’s becoming old news as I’m soon to embark upon the 6-month anniversary of my relocation to Texas. And since there are something like 150 people moving to Austin each day, I’m officially a local by now.
New job, new dates, new address, new puppy, new cowboy boots and a fresh new perspective on life…. But with all of those changes, one thing remains constant, I still have RA. On the bright side, I escaped the worst winter Chicago’s most recent history. And along with that, I saved myself from a lot of extra pain and stiffness that for me comes hand in hand with cold, brutal weather.
I will soon be testing Actemra, a newish RA injectable. Have you or anyone you know tried this medication? Would love to hear about your experience with this drug because after all, sharing is caring.
Calling all Chicago folks affected by Rheumatoid Arthritis!
Innovations Consulting Group is holding a FREE series of workshops for patients with Rheumatoid Arthritis this Thursday, 6/14 at the InterContinental Chicago Hotel located on Michigan Avenue from 6PM-8PM.
I just came across a really exciting article written by Susan Bernstein, published by Arthrtis Today which claims that joint surgery is on the decline for us Rheumatoid Arthritis sufferers. I’ve posted an exert from the article below because this news is too great not to share. I’m loving this kind of progress!
When rheumatologist Erdal Diri started working at Trinity Health Center in Minot, N.D., a decade ago, he saw many rheumatoid arthritis patients referred to him by surgeons frustrated by the levels of joint inflammation they saw.
“Most of these patients were ending up with orthopaedic surgeons and during surgery, they opened up their joints and they were so inflamed that they closed them up and sent the patients to us” to get the inflammation under control before joints could be operated on, recalls Dr. Diri. Better inflammation-fighting drugs and a new approach to treating RA more aggressively has changed that, he says. From an average of 30 to 40 RA patients being sent for surgery a year at this rural hospital, Dr. Diri now sends only 4 to 5.
“We get control of inflammation at an earlier stage, and we don’t see the joint deformity that we used to see, so the numbers of surgeries are going down. We are living in the anti-TNF era, and we’re seeing the results of that now,” he says.
Biologic drugs that suppress inflammatory agents like tumor necrosis factor (TNF) and others are indeed making a positive impact for people with RA. Surgery to repair joints deformed by RA is down sharply nationwide over the last twenty years, according to recent research.
The most recent study, conducted by rheumatologists at the Mayo Clinic in Rochester, Minn., and published in Journal of Rheumatology in January, tracked surgeries among 813 RA patients from 1980 to 2007. The researchers, led by Eric L. Matteson, MD, found that the incidence of any joint surgery within 10 years of their diagnosis went from 27.3 percent in the 1980 to 1994 period to 19.5 percent from 1995 to 2007. Soft-tissue surgeries declined the most over the period studied, but total joint replacements were down as well. Women and obese RA patients still had more surgeries than men or thinner patients.
In an earlier study published in the journal Annals of the Rheumatic Diseases, researchers supported by the Intramural Research Program at the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS, part of the National Institutes of Health) also tracked a group of California RA patients from 1983 to 2007 and found similar declines. Knee replacements for these patients dropped 19 percent over the period and hip replacements dropped by 40 percent.