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Rheumatoid Arthritis

Addressing Fatigue and RA

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“Snap out of it.”

“You just need a good night’s sleep.”

“Maybe if you got out of bed, you’d feel better.”

If you have fatigue, chances are you’ve heard one of these or something similar. And if you suffer from fatigue, you know that they aren’t true at all.

Chronic fatigue is more than just being tired. It’s more than needing a cup of coffee or a quick power nap. Chronic fatigue can be debilitating and if you have Rheumatoid Arthritis, there’s a good chance that you deal with it on a regular basis. If you are fortunate enough to not suffer from chronic fatigue, a good way to understand how it feels is to think of the last time you had the flu or a serious illness. You probably remember resting, trying to watch a tv show or read a book and falling asleep a few minutes in. You awoke later to feel the same, still exhausted. The rest you had didn’t provide you with any energy at all.

Before I was diagnosed with Rheumatoid Arthritis a few years ago, I found myself falling asleep while getting my hair done. Sure, getting your hair done can be a bit boring, but definitely not enough to literally put you to sleep. I remember my initial reaction being one of fear. Not fear as to why I was falling asleep but fear that if I jerked awake while getting my hair cut, I could end up with quite a messy situation!

Fast forward a few years- my disease activity has gone up and down and much like the pain in my joints, my fatigue ebbs and flows as well. The difference is, I can medicate my pain- I can put an ice pack on it, take a pill, throw on a compression brace and I will ultimately (hopefully) get some relief. Fatigue on the other hand, isn’t that simple to overcome but here are some strategies that may help you:

Talk to your doctor.

  • This is important. Your doctor needs to know how much fatigue is impacting your life- just like your joint pain or stiffness.
  • Your doctor may also want to rule out any other medical causes for your fatigue so this should be your first to-do.
  • Be sure to explain how your fatigue is different from your feelings of being tired. When I first brought up my fatigue to my rheumatologist, she asked if I was getting enough sleep, if I possibly needed a sleep study. I had to really think about how to explain the difference I was feeling- it wasn’t something that would go away with a nap or 10 hours of sleep. It was a feeling of exhaustion from simply being awake.
  • Be sure to explain how the fatigue makes you feel. For me, it was scary. The fatigue would hit so strongly that I was afraid to drive at times. Make sure your doctor knows this.

Plan your day.

  • Fatigue is disruptive. It’s important to schedule a time to rest during the day. I know that when my daughter and I run errands on Saturday mornings, as much as I want to go to the gym in the afternoon and clean the house, I must lie down after lunch. I have to. Sometimes just knowing that my nap is coming, gives me that extra boost to get through the long Target line.

Communicate.

  • This is hard one, I know. People tend to understand and empathize with pain. If you’re in too much pain to do something, that’s ok, it’s not questioned. But if you say you’re too tired? That’s not always met with the same understanding.
  • Try your best to explain to your family, friends, and coworkers how your fatigue feels, how it impacts you and even how it impacts them. I had to have conversations with my husband like those I had with my doctor. I had to explain how dangerous the fatigue made me feel and how this wasn’t something I could nap away.
  • These conversations will vary with whom you’re speaking with. My kids see being tired as needing sleep and nothing else. Adults in my family have a bit more perspective since they can see my disease as a whole but they still have told me at times to drink a caffeinated drink or go to bed earlier.
  • It’s hard to concentrate or to be in a good mood if you’re struggling to stay awake. Explain that you are a better wife, son, employee, or friend when you get the rest that your body requires. Sometimes when people hear how something impacts them, they are more likely to address the problem.

Most importantly, try your best not to feel guilty (way easier said than done, right?!) and know that you are not alone. You didn’t choose this disease and I guarantee you would give it up in a heartbeat. There are plenty of other patients, just like you, battling with fatigue each day. Make sure you share your story and what has helped you in managing your fatigue. You can also visit Joint Decisions on Facebook to find more information and resources.

 

This post was sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions, however, all thoughts and opinions presented here are my own. All thoughts and opinions presented here are not the thoughts and opinions of Johnson & Johnson and should NOT be taken as medical advice.

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Rheumatoid Arthritis

Release the burden!

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Back in October, I had the pleasure of being with fellow RA patients in Philadelphia for our Joint Decisions Summit. On the last day, we had the chance to participate in the What I Be Project (you can read about my experience here).

After some discussion with the founder, Steve Rosenfield, I decided that I needed to be free of feeling like a burden. A financial, emotional, physical burden.

For the few months following the summit, I had a better perspective. Sure I would say that I was sorry to my husband too many times and yes, unnecessary tears were shed but I really tried value myself. Until this morning.

If you follow me on Instagram or twitter, you may know that I am almost always in some state of nausea. My pain patch makes me nauseous and when I take my morning or evening meds, my nausea spikes significantly (post methotrexate injection nausea is in a category of its own). I drink ginger ale every morning on my commute- I have my nausea attack down to a science. I have Zofran but I try to save it for when I’m traveling or really need to function after methotrexate.

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Favorite Things

The Whole Health Life Review

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I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

The Whole Health Life is, to put it simply, a book that discusses how our mind and body are so tightly connected and how that connection impacts our lives, especially the lives of those with a chronic illness.

Before I tell you what the book is about, let me tell you what it isn’t. The Whole Health Life is not:

  • a quick fix or a cure for your disease or a guarantee that you won’t get a disease in your lifetime
  • an alternative to every medication your doctor has prescribed for you
  • full of expensive supplements and treatments

What it is, is a comprehensive guide of simple, evidence-based solutions to improve your health from all angles. Continue reading

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Favorite Things

PillDrill is a must for patients!

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“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.” 

 

When I was offered the chance to have a PillDrill system sent to me to review, I had high hopes. Like many of you with a chronic illness or two, I take a lot of medications. Some are morning only, some have to be taken at night, and others are taken weekly or throughout the day as needed. I found myself jotting pain medications or antibiotics on post-it notes around the house. I tried to remember the last time I took a pain med by seeing if I happened to tweet about my pain earlier. There were days I’d start feeling strange at work and didn’t realize until I got home that night, that I hadn’t taken my morning medications.

In short, my system wasn’t working. All of that time and energy I spent trying to remember my prescriptions and jot down how I was feeling that day (to share at future doctor’s appointments) could have been spent on much better things.

Enter the PillDrill.

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Hope Rheumatoid Arthritis

Don’t make decisions for tomorrow based on today. 

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Today was one of the worst days I’ve had in my five year battle with Rheumatoid Arthritis. I woke up hurting but taped myself together and took three tabs of ibuprofen as I dropped my son off at school.

As soon as I got on the road to start my 50 minute commute, my elbows (freshly taped this morning) were so painful and felt so weak that I had to switch back and forth between each arm to hold the steering wheel. My hands started swelling and my knuckles wouldn’t crack, no matter how hard I tried. I grabbed my heavy compression gloves and put them on at a red light.

My knee decided to join the party a few minutes later. Since I was driving, there wasn’t much I could do except massage it (and punch it) with the tennis balls I keep in my center console.

By the time I arrived to work, my eyes were red from crying and I was exhausted.  Continue reading

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Rheumatoid Arthritis

The Gupta Programme

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I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in now way influenced by the company.

The Gupta Programme is a three month program that includes a variety of materials. The program is designed for patients with ME/CFS, Fibromyalgia, and/or MCS. I can attest to how it helps with Fibromyalgia and with the pain and stress my other chronic illnesses cause me.

Overall, I found the program to be all encompassing- it allows learners of all types to get the most out of this program. The program includes the following: Continue reading

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Rheumatoid Arthritis

I’m tired.

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This morning I went to the ortho to follow-up on my shoulder and knee. My shoulder isn’t better even after an injection two weeks ago. My knee pain is some of the worst I’ve ever felt in my life. Last night it took three hydrocodone pills, ice, elevation, and plenty of tears to get my pain manageable. Earlier this week I called my new rheumatologist’s office to see if they had any cancellation spots, for the millionth time. She’s out of the office this week, so that little glimmer of hope got annihilated. I now have to fit Physical Therapy into my life to try to get my right knee strong enough to have surgery on the other knee. Continue reading

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Rheumatoid Arthritis

Hands

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Since I was born, my Grandmom frequently told my mom, and later me, that I had beautiful, long, slender fingers- perfect for playing piano (I chose the trombone in middle school haha).

Fast forward quite a few years. For awhile now, my left hand has always more swollen than my right and I usually don’t think much of it. Well that’s not true. I often notice how huge my fingers are, how the veins protrude. I notice my hands all day long- while I’m driving, working, sitting on the couch.

I had my fourth infusion yesterday- this was an important one. If I don’t notice marked improvement, it’s time to move on to another biologic. I found myself checking every part of my body, looking for some sort of progress. Turning my head, bending my knee, etc. I checked my hands and noticed this: Continue reading

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Hope Rheumatoid Arthritis

Grateful Body

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I have had a Get Fit Book in my drawer for over a year. It got depressing to use because my body, especially my joints, is a constant source of disappointment.  My body doesn’t move the way I want it to, when I want it to. It’s required multiple surgeries, constant medication, and is completely unpredictable.

I pulled out my fit journal tonight and prepared to throw it away. And then I thought about it. Continue reading

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Hope Rheumatoid Arthritis

Validation 

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A few hours ago, I spoke with my rheumatologist about this nasty flare that I can’t seem to kick. We agreed on the cause, my father’s death recently, but we’re at a loss as to what we could actually do about it.

My pain management doctor had me do a course of steroids which, for the first time ever, made no difference. My allergies and asthma were fantastically controlled but that was it. My joints remained swollen, the pain continued to be intense, my temperature still rose, and my fatigue was just as debilitating. My rheumatologist agreed that I had taken a high enough dose where I should have felt and seen a difference.

We also agreed that it was too soon to throw in the towel Continue reading

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