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 was fortunate enough to meet some fellow RA warriors over the weekend. We shared stories of pain, suffering, laughter, courage, fear, hope, loneliness, depression, fitness goals, clean eating tips and most important of all, quality time spent with people who have so much in common with each other.
As the weekend progressed, I jotted down some notes that I’ve wanted to share with you, my dear readers. One of my favorite discussions was built around what we coined #ArthritisStreetCred. Below is a list of just a few things that gives individuals #ArthritisStreetCred.
People accuse you of being dramatic rather than sick because you look just fine to them. The truth is, rheumatoid arthritis is often an invisible disease so you may look fine on the outside, while you’re reeling from pain on the inside
Your pharmacist knows you by name. If you’re like me, you’ve switched medications umpteen million times, trying to find the right potion or dosage to help alleviate your RA symptoms. This requires frequent visits to the local pharmacist. I like to think of myself like Norm from Cheers when I walk into CVS. I apologize to those not born before the early 80’s, as this reference will make zero sense to you.
You go gluten free because it helps alleviate arthritis inflammation but people chastise you for hopping on the trendy diet bandwagon you since you don’t technically have celiac disease. Look people! I’m not going to throw up every time I eat a piece of bread, but I did take a food sensitivity test at my doctor’s office that confirmed my body is majorly adverse to baker’s yeast and flour. And when I eat those things, my body feels crappy. Take that jerks.
There are days you wake up and cannot get out of bed because the pain is too excruciating. There are nights you can’t sleep because you feel like you’re dying and even consider chopping off one of your own limbs to make the pain stop (well maybe that’s going a little overboard). I’m not a parent (yet), so can only imagine the heartbreak of not being able to lift or care for your baby without someone’s assistance. In my eyes, this is the epitome of #ArthritisStreetCred.
You walk with a cane or leg braces, wear wrist braces, knee braces, various ace bandages…. And you’re only 25. This is what I call #ArthritisStreetFashion.
Injecting needles into your own body or getting infusions is the norm for you. Every time I hear someone say they’re afraid to get a shot, I secretly snicker under my breath, especially when it’s a big, strong, man. If they only knew what it was like to administer their own shots on a regular basis.
I know there are tons more examples of what gives our community #ArthritisStreetCred. I’d love to hear some of yours!
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.
This is a pretty inspirational video on a young Australian woman diagnosed with Rheumatoid Arthritis. Not only does it prove that arthritis doesn’t discriminate as she was young, fit and active when her symptoms began, but it also shows how a positive outlook and quick action can help make this chronic disease more tolerable.
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…