Mastering The Impact Of Fatigue In Rheumatoid Arthritis

What is fatigue in rheumatoid arthritis?

It’s easier for people to think of joints as causing problems than to think of fatigue and the other intangible things that give RA patients trouble. That’s because fatigue is not something you can put your finger on. It’s a sense that you’re not feeling up to par, that you’re slowing down. Nothing else may be wrong that’s obvious to you or your physician. You may or may not have joint pain or stiffness at that moment. But the fatigue is there.

Patients sometimes compare the fatigue of RA to recuperating from the flu – as if they’re trying to keep up and can’t do it. But that’s not quite all of it. There’s something more that’s hard to define. The fatigue of having a systemic rheumatic disease is unique and can be very difficult for patients and those around them.

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HSS is nationally ranked #1 in orthopedics, #3 in rheumatology, and #16 in neurology by U.S.News & World Report (2010-2011). HSS has been top-ranked in the Northeast for both orthopedics and rheumatology for the 20th consecutive year. In addition, Consumer Reports ranked Hospital for Special Surgery the best hospital in New York City according to their patient satisfaction study.

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The Frenemy Within

love-hateLove-hate relationships are never good, especially when dependency is involved. They are even worse when one is talking about drugs. Last night, before going to sleep, I shared news about today’s impending reduction of my “drug of choice”. The numerous replies that I received let me know that I was not alone. (To everyone who responded to my Facebook/Twitter posts, thank you.)

This is a little bit of what others had to say: “Tapering down from 7.5 to 5mg tomorrow myself.” “I’m work’n my way down to 10mg too...” “ I just went down to 5, I was at 7. We’ll get there.” “Kick some RA butt!!” “Wishing you loads of luck and sending good good thoughts your way!” “I sure wish I could get down to that!!”  “Tapering down is hard- I just recently got completely off after starting at 20 a year ago.” “You can do it…. Wishing you lots of luck!!!” “It took me soooo long to get off of 5mg…I was doing ‘ok’ for 2-3 months then BAM…” “ After I got down to the 5mg I tried cutting them in half and it didn’t work!!” “ I have been off it now for nearly seven weeks and doing just fine!”

20, 5, 7.5, 10, 2.5, 15…what do all of these mysterious numbers refer to? No, we are not referring to some mysterious street code that must be used in order to get our daily fix. We’re talking about milligrams. Mgs of Prednisone. And it’s all perfectly legal.

But just because something is legal doesn’t necessarily mean it’s right. Don’t get me wrong, I perfectly understand the need to use corticosteroids during those times when it comes down to a choice between a)being able to move and b)once again taking those tiny-if-they-were-any-smaller-they’d-be-microscopic little pills.I have had to depend on these pills at times. But I’m reaching a point where I no longer want to depend on them.

Over the past few years I’ve done one or two tapers a year max, each one lasting no more than three weeks. Over the past few months, I’ve…well, I’ve been on Prednisone since December. Anytime I’ve attempted to reduce my dosage to 10mg or less, things have started to go horribly wrong.

Today, I taper down to 10mg.

The good news: those horrible hunger pangs will probably start going away…or, at least, be less strong. Those of us who live with rheumatoid arthritis know all too well the feeling of waking up more tired than when we went to sleep. Those of us who are on Prednisone know all too well the feeling of being more hungry after eating somethhing.

The bad news: well, I don’t want to jinx myself. Let me just say, I will get through this taper. And the next one. And the next one.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Good Things About Having Rheumatoid Arthritis?

The Patient Experience

My RA has been more in focus this week because of a comparatively minor flare that I have been dealing with since last Thursday. I have been letting the whole situation get to me on an emotional level and that rather irritates me. So- in an effort to take back my power over this disease- today I am celebrating the positive side of having RA.

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Chronically Positive by Julie Faulds

Chronically PositiveIf you are looking for ideas on how to improve your outlook or come to terms with your current difficulties, this book was written with you in mind. After being diagnosed with Rheumatoid Arthritis- the debilitating autoimmune disease for which there is no cure- the author went through the “normal” stages of grief. After months of grieving for “what might have been”, she realized that it was up to her to choose how she would live with this diagnosis. When she decided to search for the good in her life rather than mourning the losses, she began blogging about her journey and soon found that there were many others out there who were also determined to live with rather than suffer from their situations. It is from that blog that the idea for this book was born. Whether you are dealing with chronic illness, divorce, loss of a loved one or any other of the myriad of life challenges, finding a way to see and focus on the blessings in your life can help you face the difficulties head on.

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An Attitude Of Gratitude

One woman’s journey to learn to live life from a place of gratitude while fighting Rheumatoid Arthritis.

I have made the change to a quieter life. Now I am working on living from a positive, gratitude filled place while I fight Rheumatiod Arthritis.

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Finding Comfort Within The Discomfort

OpennessWhat a day. I woke up at 12 noon, but didn’t get out of bed until 3 pm. Absolutely everything hurt, including my chest (even breathing was painful). My neck felt like it was being pulled apart; I attribute this symptom to all of the stress that I had to have been experiencing during this episode. And for the first time ever, I had a really strange bout of facial pain…sort of like the burning sensation associated with a really bad sunburn…but even worse.

As late afternoon neared, I figured it was time to get out of bed and bathe, groom, and dress myself. I made it into the bathtub full of hot water, so proud that I had done so alone. But then things got difficult. I tried to muster the strength to get back out, but couldn’t seem to do so. Sure, I could have called out for help, but I told myself to keep on trying. Mind over matter. Finally, the hot water turned warm…then cold…and I figured it was time to finally get moving again. (It’s amazing the strength that one can muster when sitting in a tub of cold water.) One leg. Another leg. One arm. Another arm. And before I knew it, I was standing up. Mission accomplished.

But wait, I still had to towel dry myself, brush my teeth, shave, fix my hair, and get dressed.

I made it to through the drying part, and then I just couldn’t move any more…no matter how hard I willed myself to do so. Instead of calling out for help, I sat down and cried. My tears weren’t so much a result of feelings of frustration or failure. They were more linked to a new level of acceptance, a new level of realization: the understanding that my mobility just outright disappears for undetermined amounts of time. Getting more and more accustomed to that strange sensation that comes when I know my mind is sending out signals…but nothing is happening.

Just at that moment, my husband stepped into the bathroom to check up on me. After helping me finish my routine and once I was dressed, he suggested that I once again lay down and rest in bed…but all I wanted to do was sit upright. So I did. I sat at my desk…and I thought.

I thought about how confusing all of this is, even though deep down inside I have a certain feeling of internal balance. It’s confusing, because normally during episodes like this one I’d feel really scared. And depressed. But I don’t really feel this way, and I don’t know why. So I began to wonder, am I really just in denial?

Am I not allowing myself to really process everything that is going on, to feel the pain even though most of my body is actually quite numb as the result of its constant presence? Am I not allowing myself to see the true enormity of my increasingly frequent episodes of loss of movement? Am I being overly optimistic, unrealistic?

I don’t think this is really the case, either. In fact, I feel like my eyes are actually wide open. But it’s not just my eyes that are open. My heart is open. I’m feeling what’s going on. My mind is open. I’m thinking about what’s going on.

And then I began to realize, that this discomfort, just like my tears a little earlier on, actually came from new levels of acceptance. They are coming from this openness, from this first-hand awareness. From reaching out and connecting with my constant pain, in an attempt to try to get to know it just a little bit better. From knowing and accepting my disabilities and loss of movement, strength, and coordination when they are present, instead of fighting against them. From being able to do so, without feeling scared and anxious. From feeling like my mind is in peace, even though my body is in hell. (From feeling guilty for feeling this way, like I’m somehow leaving my body behind and moving forward with my mind.)

But I know that, at least for now, this is the safest place for me to be. Within all of this discomfort, I’ve found a little pocket where I can indeed be comfortable. For this, I am grateful.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

More Rheumatoid Arthritis Blogs

Not Standing Still’s Disease
Oh, I’m just your average, run-of-the-mill graduate student with Still’s Disease, working two jobs and trying to find balance in my life. Oh, also, I have an unhealthy addiction to pumpkin. And I love cows.
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One Sick Cookie
I had the thought the other day that I should begin blogging again. It gives me an opportunity to ramble about the things creeping around my brain. It also gives my friends and loved ones an opportunity to see what’s on my mind and hey, I might meet some new people along the way. I have noticed since I was diagnosed with Rheumatoid Arthritis that a lot of people with chronic illnesses blog. Foodies love to blog. Mommies love to blog. Well. Hell. I’m all of the above.
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The Ups And Downs Of RA (Rheumatoid Arthritis)
My name is Carla and in 29years of age and I have been diagnosed with Rheumatoid Arthritis (RA). Im writing this blog for a few reasons one being that I sometimes need to write what im feeling for my own sanity, two being that I hope to help other people with RA know that they are not alone and three being not enough people know what RA is and how it affects people of all ages in their day to day life. RA dose not just affect old people and if one person reads my blog than thats one more person that knows about RA and how it affects our day to day life.
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Katie Stewart Vents About RA
I am passionate about arthritis research as I was diagnosed with Rheumatoid Arthritis at the ripe old age of 23. I like to be creative… with my words, with sewing, with cooking and with working out. I volunteer whenever I actually have a free moment.
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