cartoon shows a turtle cross a finish line
Credit: Tatiana Ayazo

I used to be able to wear poor support shoes. I used to be able to work a full day on my feet without excruciating pain or deep exhaustion. Since I’ve had rheumatoid arthritis (RA), that’s changed.  

Now, something as simple as what shoes I’m wearing can ruin my entire day. And if I work a full day, I often need to rest for the entire day after. There’s a reason I’m on disability from this invisible autoimmune disease that ravages my body.  

With RA, I can struggle to do daily tasks like take a shower, make meals, do laundry, or even just go for a walk outside. Each day is different. It’s one of the most frustrating parts of living with rheumatoid arthritis — you never know how you feel when you wake up each day.  

What Is Pacing Myself?

Learning to pace myself — and be disciplined with pacing myself — has been one the biggest and toughest lessons since my diagnosis. Sometimes my RA symptoms become too loud before I will listen to them because I am stubborn and often just want to get stuff done. I will pay for it later.  

I walk a fine line between doing too little and doing too much. If I overindulge either way, I will pay for it afterward. Understanding this has taken years and the help of various health care professionals (including an occupational therapist) and my patient peers. I’ve also tracked my physical activity and health to better understand what triggers my flares. Yet I’m always still learning about my RA.   

When I overdo in a big way

Big events that require a lot of physical or emotional activity, or even just long periods of standing, can really cause my RA to lash out at me. Some examples: when I moved homes, threw a Thanksgiving dinner, or traveled. This is when I know I will be paying for it later for more than a day or two.  

When I overdo on one day

My high-pain days are mostly the days I forget to pause and take the rest session my body needs. When I have done too much, I experience joint pain and swelling — but I don’t just feel it in my joints. My extremities often become hot and swollen; I feel the pain in my flesh.  

When I stand too long, the pain is usually in my feet, ankles, and knees. If I overuse my hands, especially my right one, I experience pain all over my hand and into my neck and shoulders.  

But as anyone living with RA knows, joint pain isn’t the only uncomfortable sensation with RA. Cognitive dysfunction and fatigue are also prominent with this disease. Fatigue often comes first before the aggravated joint pain and swelling. Once I have used up all my energy for the day, I become a foggy hot mess (and I yawn a lot).  

But wait, that’s not all. Overdoing can also result in malaise, which feels like I’m about to get the flu or like I have a hangover without having drank anything.  

When I slightly overdo

For me, slightly overdoing it can mean spending too much time walking around the mall or standing in a line for longer than I anticipated. On these days, a little rest can go a long way. I put my feet up and apply ice for 20 minutes.  

When I try to behave like I did before RA (and pre-COVID)

If I try to do something that I was able to do when living without RA, I’m going to feel it even though in my head I think I can be that girl. I have also noticed that I can aggravate my RA easier if I attempt to exercise or handle as much as before the pandemic. 

This is due to a number of reasons. My RA is progressive, and stress, surgeries, illnesses, and a more sedentary lifestyle can worsen my RA. I’ve also been stuck in a COVID funk since the pandemic broke out. Everything changed, including my body.  

When I’ve sat for too long

Being a writer, I often sit for long periods of time when I’m writing, or when I am trying to get in the mood to write. As a patient partner in research, I also sit in a lot of hours-long Zoom meetings. It’s safe to say that during my day I can sit a lot. They say that sitting is the new smoking, so I need to make a point to get up once an hour to avoid worsening my health.  

When I sit for too long, I end up with increased back, neck, and hip pain. My legs will go numb and become restless. I get squirmy because my body needs to move and stretch. 

When I’ve slept too long 

With fatigue it feels like I can sleep forever and still be tired, which has some truth to it because if I do sleep too long, I am left feeling groggier than normal. However, with RA there are some days when I can’t nap long enough or need up to two or three naps. One of those days a week isn’t alarming to me — it means the week is catching up to me — but when I experience a series of those days I need to alert my doctor because the spike in fatigue can mean more than me overdoing it.  

When I’m close to my infusion

I started to notice that a week prior to my biologic infusion I would need naps; my chores became more difficult to do and my house became messier. Self-care becomes more of a chore. If you also notice this, definitely bring it up to your rheumatologist.  

What I Do When I’ve Done Too Much

Learning to pace myself is a challenge. I find that if I can stop what I’m doing the moment any uncomfortable sensations begin — by just resting or doing something else for 20 minutes — I can get what I need done.  

Honestly, the only thing that works effectively is rest and being kind to my body. I have to remind myself to take a rest day once a week — and I might not get out of my pjs — but I can’t let myself have too many of those rest days. Finding that balance between too much and too little is a true artform that takes years to learn with RA. I’m still figuring it out — but here’s what I’ve learned along the way:  

Always, always take your medications before a strenuous event, as it helps prevent some of the inflammation that overdoing can cause. I don’t regularly take prednisone but I have an emergency dose I know to take before a strenuous event. This can sometimes help prevent or reduce worsening symptoms. 

  • Always have comfortable shoes available 
  • Always have ice packs ready 
  • Always have some sort of pain relief (topical or oral) on hand 
  • Hydrate and nourish your body with a nutrient dense meal loaded with anti-inflammatory ingredients

If I know a big event is coming up, I make sure to focus on the following:  

  • Regular physical activity, especially strength training 
  • Proper sleep hygiene 
  • Avoiding triggers  
  • Medication adherence  
  • Pacing myself  

What I Do When I’ve Done Too Little

I can’t just jump into a workout that I used to do when I was consistently exercising. I have to ease myself back into things or I will do too much too soon and crash all over again. This is what I do to pick myself back up after too much sedentary time:  

  • Do a full body stretch for a good 20 minutes 
  • Walk or swim at a comfortable pace for 30 minutes. If that seems too difficult at first, spread it out in 10-minute increments throughout the day until you regain strength and endurance. 
  • Loosen up in a sauna, hot tub, hot shower, or bath  
  • Hydrate and nourish your body with a nutrient dense meal loaded with anti-inflammatory ingredients 

Once I get a little bit more pep in my step after doing this for one to two days, I add in strength training with resistance bands or my body weight. It generally takes me three to four days to really start to feel the true benefits of regular exercise. However, often after just one bout of physical activity, I feel a difference after being sedentary for too long. My body will feel looser and lighter. I will have a boost in my mood and sleep better. I love the sauna because it gives me a similar feeling as exercise does — plus the heat feels great on my achy body.  

Why I Listen to My Symptoms

Being down for one day is not too much to worry about — we need to recollect our spoons — however if you feel down over two, three, four, or more days it’s alarming and I suggest tracking your symptoms along with what you’re doing to manage your flare. If nothing is working after a few weeks, it’s time to consult with your rheumatologist to see if something else is going on.  

Be a More Proactive Patient with ArthritisPower

Join CreakyJoints’ patient-centered research registry to track your symptoms, disease activity, and medications — and share with your doctor. Sign up.

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