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.
It’s no secret that catching major Z’s can be virtually impossible when you have RA (Rheumatoid Arthritis), especially when your disease is flaring. Whatever the reason for not being able to sleep; pain, stress, anger, all of the above; sleep is so important for your overall health. In fact, insomnia can further damage an already dysfunctional immune system.
In Health Monitor’s March 2012 issue of “My Guide to RA”, they share 5 tips to help us Rheumies saw more logs (a fancy way to say “get more sleep”).
1. Cover the basics. Your bedroom should help you relax. Make sure you have a comfortable mattress, high-quality pillows and no clutter.
2. Develop a relaxation ritual. Plan to relax and wind down at least one hour before you go to sleep. This could include dimming the lights, turning off the TV, listening to soft music, meditating, and/or taking a warm bath with candles and a book.
3. Stretch, stretch, stretch! At home—and even on the road when you travel for work – Some make it a priority to take a hot shower each night. And then follow up with a series of stretches, including yoga.
4. Have sleep and pain medications ready. Check with your doctor to identify the appropriate medicine to take in the evening. After three or four nights of poor sleep, some will turn to a prescribed sleep medication—but only after they have gone through the typical routine of stretching and a hot shower. Tim, a man afflicted by RA said “I used to reach for a sleep aid when I could have stretched,” he notes. “It is so convenient to take the pill.”
5. Exercise regularly. “I try to get good exercise during the course of the day. It just makes my joints feel more lubricated,” says Tim, who likes to walk, bike, swim and work out on the elliptical machine. However, he makes sure to work out earlier in the day, as exercising late will stimulate him and keep him awake.
However it is that you choose to stay in shape through exercise and or relax, just make an effort to do it. Your body will thank you and be more apt to rest at night. God knows you deserve it because fighting disease can definitely take a toll on your system. The full article can be found here.
Enthesitis Related Arthritis is a form of arthritis that begins in people under 16 years of age. Although it is more commonly diagnosed in boys, girls can also have ERA. Onset is usually between the ages of 9-12.
ERA is also sometimes simply called enthesitis. If a child has been diagnosed with enthesitis by a pediatric rheumatologist and requires long-term follow-up, verify with the doctor that the full name of the disease is ERA aka enthesitis-related juvenile idiopathic arthritis. Not only is enthesitis one of the forms of JIA, but it is also part of a group of diseases called spondyloarthropathies.
This type of arthritis is significantly different from osteoarthritis, which is the type of arthritis typically seen in older people and athletes. In osteoarthritis (OA), the cartilage cushion at the joint between two bones wears away. Bone-on-bone is extremely painful. With OA, tylenol…