RA Fatigue: Tips to Slay the Beast
It's overwhelming. It will crush you. It's hard to explain. Some days you cannot win over this monster. People will tell you it's in your head. Your body will convince you otherwise, and soon people's opinions won't really matter. Of all the symptoms of RA and other auto-immunes, this is one of the top three I hate the most. The RA monster called "fatigue." It's a kind of tired, but more than tired. It's different than an I've-overdone-it tired. It's a tired that no nap cures. It's not that kind of tired. And extremely difficult to explain to others. Other CDP's (chronic disease peeps) will understand what you're talking about. But healthy people-??? Sometimes not so much.
Most anyone with auto-immune of any kind has experienced the overwhelming fatigue that comes with chronic AI disorders. There's no easy way to describe it. I'm not sure there are even words that accurately define this monster and describe its effect on a CDP's life. Fellow CDP's (chronic disease peeps) will understand what I'm talking about. Perhaps those who take care of us CDP's will have some understanding. The fatigue, the tired that just won't go away, the absolute exhaustion affects our bodies, our minds, our relationships, our jobs. It infects every single aspect of our lives with no invitation, no welcome sign and no open door.
There are no easy answers, no quick fixes, no sure-fire way to slay the beast of chronic fatigue. But there are a few things we can do to boot out this unwelcome resident, or at least put him in his place, which is out the back door, in the far corner of the woods.
The Arthritis Foundation addresses the difficulty of overcoming the fatigue of chronic illness. Mentioned in the article are medications and lifestyle changes, and there are other helpful articles linked in the story. Really helpful information, I highly recommend taking the time to check it out.
Besides helpful info from the Arthritis Foundation, here are a few tips I've come across on my own personal journey, things I've learned along the way. All provided for your reading pleasure and at absolutely no co-pay! 😉 (referring the site to friends and likes/follows/shares/recommends for the Facebook page are greatly appreciated, though!)
Keep an eye on your vitamin D level
Mine has been critically low before, and after taking prescription-strength VitD to get it back up quickly, my energy was much, much better. I now take an OTC (over-the-counter) supplement to keep the levels where they need to be. I definitely feel better when this level is stable.
Watch your Blood Pressure
Most people are familiar with high blood pressure, but few realize that low BP's can come with auto-immunes like Rheumatoid Disease and Sjogren's. When BP's and pulse rates are low, we aren't pumping enough oxygen around our bodies and our tissues become starved for air. I battled very low BP's and pulse rates for years, and even had a pacemaker implanted (my pulse was 19 that day). Eventually, the docs at Vanderbilt's Dysautonomia Clinic recommended a trial of Provigil (modafinil), which is actually an ADD med. I don't need it for ADD and therefore, it doesn't produce those effects in my system, but it has been a key part of fixing the low BP and lack of energy problem. It's decreased my prednisone usage by 80% or more, which has been a very good thing for my bone density, as evidenced by better DEXA scores this year. (The Arthritis Foundation link above speaks to use of this medicine).
Tip: It's often difficult to get in to see my rheumatologist, so my PCP (primary care physician) oversees this medication. Many PCP's are not familiar with this unconventional use of Provigil, so it might be a good idea to do your research, then discuss the findings with your doctor when you request a trial.
Tip: It's a really expensive med, so check insurance coverage and look at medication assistance programs for help.
Understand your adrenals
Our adrenals are so very important to health and overall energy levels. It's these little guys that send out adrenaline when our bodies call for it, i.e., any time there's a stressor on our bodies. If we're working out, working in the yard, have a headache, are fighting disease (hello....like all the time - ???) or dealing with emotional or relationship stressors, these warriors boost our energy by sending out some extra adrenaline. It's our "fight or flight" mechanism, and when it doesn't work properly, we can experience extreme fatigue and a "wiped out" kind of tired feeling, particularly later in the day, and particularly after a full day. The more we do, the more tired we become. There is no adrenaline rush for us. No nap will cure this, it's not that kind of fatigue. Rather, we've used up the day's adrenaline stores, likely because there is insufficient adrenaline being manufactured by the adrenals. This fatigue occurs when your pituitary gland calls for some adrenaline from the adrenals to support a given stressor (hard work, exercising, mental stress, a cold, etc), and there just isn't any for the adrenals to give. So rather than prop up the BP and pulse, or even increase them a little to handle the stressor, the BP and pulse fall because there's no adrenaline to prop them up. This is the greatest "wiped out" kind of feeling I've ever experienced, bar none. It's absolutely terrible, and there is no pushing through it. You just try really hard to finish what you're doing and not pass out. Which I've done, actually on several occasions. Ridden in the back of an ambulance, too. (Thankfully, the pacemaker fixed most of this, at least the pulse doesn't fall now.)
But our adrenals weren't made to sustain always being in "fight" mode. Always "on the job." They need some downtime, too. In fact, we make adrenaline on a daily basis, and we generate all we need for any given day during the night's sleep just before. So guess what.... if we're not sleeping well, our adrenals aren't re-charging, so we'll be tired and not have extra energy the next day. Likewise, if we stay in an ongoing pattern of always stressed, our adrenals give out. They get tired. Sometimes they no longer work and their power is insufficient for what our bodies need. This is a huge reason why rest is so important. Like, uber important. And not just physical rest, but mental and emotional rest, too. You know that grudge we're holding... ?? Yeah, that sucks power from our adrenals. That "I'll do it myself" mentality (which is really code-speak for "prideful"), yeah, that overworks our adrenals, too. They're already super busy helping us fight this on-going disease thing, so let's do ourselves a favor and get rid of the extra stuff we don't have to carry. Be good to these little power glands - we don't get another set.
Tip: My doctor at the the Pituitary Clinic at Vanderbilt taught me how stopping steroids abruptly wreaks havoc on the adrenals, and thereby, my energy levels. While I've never abruptly stopped a steroid taper, there was room for improvement adrenal-wise by doing really, really slow tapers, like triple slow. Especially in cases where steroid use is common and on-going, the adrenals see that steroids are on board, so they don't recognize that they need to work. If we abruptly stop a steroid taper instead of finishing it out slowly, we mis-lead the adrenals on whether/not we need them to wake up and work. The Vandy doctor told me to always do a very, very slow taper towards the end of prednisone rounds. Like.... down to 3 mg for 3 weeks, then 2 mg for 3 weeks, then 1 mg for another 3 weeks. Yes, that slow. Many regular physicians don't know of this concept on prednisone tapers, so read about it at the Vandy link, or do your own research from trusted sources, then ask your doctor about it in your case. My adrenal numbers are still not great, but they did improve slightly when we did a really, really slow taper over 3-4 months to try and correct/re-set things. (Reminder... always check with your doctor on any changes to your routines. No compromise here.)
Tip: Because of the low energy and low BPs, I do not exercise or go hiking alone. I no longer work in the yard if I'm home by myself. If you struggle with the dysautonomia of Sjogren's and/or adrenal insufficiency/Addison's disorder, do yourself and your family a favor, and make sure you have someone with you when exercising in any way. Make sure family, friends, and people at work know of this disorder, so if you do have a syncopal episode (fainting), someone knows your history and can relate it to management, the EMT's, ER staff, etc, especially on the off-chance that you're unconscious and can't do your own talking.
Exercise each day
Moving when you're hurting and tired seems counter-intuitive, but exercise really does help. It also gets us in a better state of mind and turns daily defeats into promising wins. I must be diligent and extremely intentional about exercise, movement and exercise aren't my default. But daily exercise doesn't have to be an hour-long workout. It really doesn't even have to be "exercise." For us CDP's, it can be as simple as getting up and getting a shower. Or getting dressed. Or walking outside for 5-10 minutes. A 5-10 minute stretch a few times throughout the day is better than not. The idea is to move our bodies. It will help with the pain and release some endorphins, giving us a little pep to our step. Keep it simple. Call it "movement" rather than a "workout." But get moving. Be intentional about it. Call a friend and ask them to hold you accountable. Join a Facebook Support Group where others can encourage you and you can encourage them on this journey.
Resource: Dance-based movement/exercise is a growing trend. I've discovered this kind of movement is not only helpful, but a crazy fun way to keep movement fresh and new, avoiding the stale/boring mindset that often comes about a month in. I became a Refit® instructor in 2016, during my first RA remission. This was definitely a slay-the-beast moment on my journey! Many of the REFIT® online videos are free and all are quite helpful. There are simple and very basic movements, providing a gentle dance/movement workout, and I used these extensively at first. REFIT® also has more advanced ones, and you can work up to those. Working out and moving in the privacy and convenience of my home is really helpful and cost-effective, and now I volunteer-teach a class once a week at a local church, which keeps me plugged in to community.
Resource: If you're in my area (upper East TN), let me know and come see us in class! It's at a local church, open to the public and is free. (Childcare is available on a donation-basis if we know about it ahead of time.) Don't worry if you can't move very much. I teach from a chair when I'm not feeling well or battling fatigue/pain, which is at least half the time. We also do ACE-recommended floor work/stretching, as well as progressions/regressions for all our steps, so anyone at any stage can fit nicely into our class.
Here's a Facebook link, let me know if you're interested in coming! A Fit Faith - Fitness with Elisa/Facebook
Resource: The Arthritis Foundation's site also has some free videos for basic arthritis movement/exercises, and I find these extremely helpful. There's an entire educational section on this site regarding exercise and rheumatoid arthritis. Take a look at these resources, they are free. I've used several of them in our movement class at church.
Tip: For especially painful days, I set the alarm on my phone to go off every hour with a reminder to get up and at least walk around or stretch for a few minutes.
Look into Naturopathic Solutions for fatigue
I'll admit it... I'm a skeptic. I have a friend, KG, who truly knows this side of me and points it out from time to time. I can't help it! The nurse in me said these "natural" remedies are a bunch of hullabuloo and a scam. I wasn't about to spend money on these ridiculous fads. And then a sweet friend bought me some to try. Oh.my.word...sweet mama.... I'm seeing now that my nursing school training was from yester-year's game and today's nurses know about alternative treatments. The energy from the smell of orange in my house just lifts my spirits, y'all... I'm shouting from the mountain here... get you some orange oil - just do it! You'll thank me later. (It's a great birthday or Christmas present for someone to get for you, by the way...)
Ever the skeptic, the real changing point for me happened along this latest GI journey when my GI doc AND my surgeon (yes, my DOCTORS...) recommended essential oils and natural vitamins/supplements to combat the GI pain and dysmotility of Sjogren's. I nearly fell out in the floor. Seriously! With all the sophisticated pharmaceutical options out there, they recommended...I could hardly believe it.... <wait for it>.... peppermint ??? I even looked at them and said, "Peppermint?? That's the best you got???"
Yeah, I really said that....
My GI doc didn't recommend a specific brand, but peppermint supplements that are enteric-coated so as to digest post-stomach are apparently a natural remedy for auto-immune GI issues like Crohn's, dysmotility from Sjogren's and ulcerative colitis (I have the latter two, and they are absolutely awful). It's important that the peppermint make it past the stomach to the small and large intestine/colon, so that it's not destroyed by the stomach's acid and gets to the place where it's needed most. She also recommended probiotics. Said they're a must. And she's got a sister with auto-immune gut issues, so she's seen first-hand that these things make a difference. My surgeon - ?? He's got a daughter with AI gut issues, so he's seen a clean, gluten-free diet, naturopathics and probiotics work wonders first-hand. Come to think of it... my entire medical team, with only one exception, all have a first-degree relative with AI issues. My PCP has a mom with RA and my Rheumy's daughter has RA - and is a concert pianist. I couldn't have put all this together on my team if I'd tried.
I'm gonna go all spiritual for a moment... isn't it just like God to put the right people in our path at just the right time, with just the right wisdom, for just the right reasons? I'm blown away by His goodness. I love my patient care team. They truly care and want me to win.
I'm still on my journey, but am encouraged that there are natural remedies out there that just might help. Definitely do your research, but I'd highly - HIGHLY - recommend that you look in to natural remedies like oils, diet supplements, probiotics, massage therapy and other non-pharmaceutical ways to improve the way we feel. (Reminder... keep your doctors in the loop on anything you add to your treatment regimen. This is a must, no compromise here.)
Resource: So long as your doctor writes a prescription or letter that you need these naturopathic treatments, there's a chance you can deduct these costs as healthcare expenses on your taxes. I'm still researching this, but many HSA's and tax laws allow tax credits for healthcare expenses, even if they're not official/prescribed meds. I've seen some lists that show you can deduct things like bandaids and off-the-shelf reading glasses. Here's an interesting article from TurboTax on this subject with lots of links to more information. I found it very helpful and quite enlightening, as I'm not currently maximizing our budget here. Look forward to improving on this for the upcoming year. The chronic road is expensive to travel - every little bit helps financially.
Resist the Urge to Isolate
One of the things that slipped up on me when I wasn't allowed to work was the loneliness and isolation that can come with being at home sick. I'm a people person and up to that point, had always been able to push through the pain and fatigue of RA and the other AI's I have. So this season of not working is the first one ever where I was taken out of work by my doctors. Actually, my PCP has recommended it for years and this time, overrode me and wrote the letter anyway. Because sometimes I'm stubborn that way...mostly because he's such a great doctor, loves me and my family and wants us to win. For the first month or two, it was glorious to just be sick and concentrate on getting better. We had to ramp up the meds again, and that's a beast all on its own. But as the weeks turned into months, it got kind of lonely. I felt isolated. The peace and quiet was nice, but I began to notice that I hurt more. I wasn't as motivated to get out and about because I didn't really have to. And who would blame me, with all that was going on health-wise?
The doctors and researchers are right to say that loneliness wreaks havoc on our well being. Dr. Vivek H. Murthy, a former US Surgeon General, says loneliness is becoming a health epidemic in the US and that research actually links it to a decrease in life-span. It's been said that loneliness is a dangerous for the body as smoking cigarettes.
We don't isolate intentionally. It sort of creeps up on us. Loneliness makes its way to our table, but it wasn't because we invited it. It just kind of slips in through the back door.
I implore you, friends, to be intentional in guarding against the isolation of chronic disease. Go to the Y. Go to the Ladies' Bible study. Go to church. Go to lunch with a friend. Let a friend come help you clean or bring you a meal. We feel better when we're in community, we're energized when we energize others, and honestly... we just need other people, and they need us. It's how we're wired.
There are so many other things to say about RA fatigue and how this can leave us not only exhausted and beyond tired, but quite discouraged, too. Try these tips and see if they help you get more ahead of the fatigue issue. The struggle is real. It's not in your head. You have every right to complain about it and feel like you just can't win. It's okay to be sad, frustrated and even angry, but just.don't.stay.there. Often fatigue gets better as our meds and supplements work into a schedule. For overwhelming fatigue that won't end, is different than your baseline fatigue levels that have become familiar, or lasts longer than you think is okay, always mention your symptoms to your doctor. Tiredness is part of the journey, but it can also indicate other things, like a new flare coming on, a brand new diagnosis, meds that are no longer working, side effects from new meds, and a host of other possibilities. Your physician will help you sort it out and get you in front of things. It takes time, and we'll always have some fatigue, but slaying the fatigue monster is completely do-able. Hang in there!
What are YOUR tips for beating the fatigue monster?
Leave a comment below and let me know how you fight fatigue.
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