Rheumatoid Arthritis And Sleep, A Dark Tale…
I’m sitting here looking at the gadget I’ll be wearing tonight. It was given to me today at the home care store I’ll be dropping it off at tomorrow. Will it hold the secret to why I have a ha
rd time getting to sleep, waking up too early, and too often? I doubt it, but it is part of the due diligence I have to do in order to exhaust all possibilities. I haven’t slept well for most of my life, and I think I have a pretty good hold on why. My pain levels are so consistently high from over 45 years of active juvenile rheumatoid arthritis, that relaxing my body enough to sleep well is extremely difficult. The physical stress that I live with can translate into emotional stress when I feel that my challenges aren’t being adequately handled, which happens often. JRA is very mercurial, and often feels like a game of whack-a-mole. This doesn’t enhance restful sleep. Add the final blow, life stresses that I don’t have control over, and you will begin to understand why I often don’t sleep well.
In a time when people living with chronic pain are scared because the government has decided that opioids are creating an epidemic of non-intended deaths, a time when disrespect and scandal are the leading news story every morning, when health-care is unaffordable for people without illness to worry about, all of our nervous systems are stressed. We don’t live in a relaxed age and all of the nervousness permeating our lives makes calming our bodies even harder. Hence the growing number of people turning to mediation and health apps that manage stress.
Like many others who live with chronic pain and disease, sleep is paramount to retaining what level of health I have. Besides keeping my inflammation as low as possible, it is the one thing that will make the difference for me in how I feel. One day with less than seven hours and I immediately notice my pain levels rise, my concentration and motivation drop, and my happy personality changes to one of barely contained irritation. Sadly, seven hours of sleep has often felt like my holy grail. My life has suffered for it.
I’ve written before about the mechanics of sleep and what happens physiologically in our bodies during healthy sleep vs. interrupted sleep so today I’m not going to focus on this. Instead, I want to get right to the good part- what I’m doing to help my body, despite the myriad of barriers I have, to get the sleep I need. I’ve spent years of my life getting to the place I am now, with a toolbox of sleep aides that help. The sleep study I’m doing tonight is the final piece of information I can get with the tools we have right now unless I want to attempt sleep in a lab, which I don’t. The reason I don’t is that I know, regardless of what they find, the treatment will be one of a few things and unless I find out I have sleep apnea tonight, I’m already doing, or have done, all of them I’m willing to do. I’m not willing to take certain sleep medications because of the side-effect profile they come with, and because, since the side effects are so dangerous they can only be used short-term. Too many people have died in their sleep and I don’t want to be one of them. And my disease isn’t short-term, so neither are my sleep problems.
What does that leave me with? Is someone like me doomed to not sleep? Happily no, and these days there are more options than ever to help us get better sleep. So, if you are suffering right now from lack of sleep, here are some ideas to consider:
Supplements and herbs:
Like any supplement purchase you need to do some due diligence, as the FDA doesn’t approve or certify facilities or products that make dietary supplements. Companies are supposed to operate with “good manufacturing practices,” but there is no oversight, so I stick with companies I know and trust. That being said there are so many herbs that help a body deal with stress and pain- many of them work well.
I live in Colorado and I have the ability to grow, and use marijuana as medicine. For me, it has been hands down the best sleep aid I’ve ever taken. It is the most effective substance I’ve ever used, including all of the medications I’ve taken for my juvenile rheumatoid arthritis, and it hasn’t given me any side-effects.
Every night I use a little music machine that is loaded with brain-wave music. It enhances delta brain waves, the brain waves that promote physical body repair and deep healing. Delta waves are also/ the brain waves that don’t happen enough in people with severe pain. Our bodies just don’t relax enough to get to delta, because, even in sleep, pain prevents full rest.
Years ago I started to incorporate these two things into my life. I do them in the afternoon, when my body needs to rest anyway, and I find that by not over- fatiguing myself during the day, and by consciously guiding my body into relaxation instead of just lying down and commanding it to rest as it pulses in pain, once night time hits, it is easier to slumber.
Cognitive Behavioral Therapy:
This is something you can receive from a psychologist trained in the technique via a sleep center or private office. There aren’t enough Behavioral Sleep Medicine Specialists but if you search through the American Academy of Sleep Medicine you can find practitioners hopefully near you. Cognitive Behavioral Therapy, or CBT, will teach you some of the things I’m mentioning such as sleep hygiene, and relaxation training, and will also examine your thoughts around sleep. Here is an article I wrote about it on rheumatoidarthritis.net:
Sleep hygiene consists of habit retraining, basically encouraging your body to relax at night in order for the hormones that promote sleep to do their job. Anyone who has sleep issues needs to look at guidelines and adopt as many as you can. I’ve had to modify and/or ignore a few to meet my bodies needs and I wrote an article about this on rheumatoidarthritis.net:
At times I do take medication to help me sleep; when I travel, and when my pain becomes high enough there is no other option. Although I’ve never found a sleep medication I like, at times they are my only option.
Although pain and sleep are like oil and water, there are work-arounds to get there. Your quality of life depends on your sleep quality so your efforts to get good sleep will always be rewarded, even if the only reward is to say, “Well, at least I tried.” So tonight, as I strap on the pulse oximeter that will tell me whether I stop breathing at night, I’m checking off another box. I may soon fill in another puzzle piece in the puzzle of my lack of sleep. If not, I’ll go back to my toolbox, and keep waiting to see if the answers will one day come.
3 thoughts on “Rheumatoid Arthritis And Sleep, A Dark Tale…”
Your articles are so helpful. Thank you for sharing your knowledge. It is honest and positive.
I do not sleep well, and I so wish I could work out how to get it done. I know this, when I sleep well I feel better and that is the best reason of all to keep trying.
Hi Rick, sleep is such a holy grail isn’t it?! I agree, you have to keep trying; I find that when I do, eventually I find something that helps. Hope you get some good sleep tonight! 🙂