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My New Normal

My New Normal

I actually started a piece on “remission” because I felt like I was doing exceptionally well. I was still on all my meds I also felt like my RA was not very active. I started outlining the article when…

RA and sickness

…Back in September, due to some insurance issues (now resolved), I missed my Orencia infusion by three weeks. After that, I was sick for two months, but just barely. I was in that awkward pre-sick phase. I tried a new medication which tipped my immune system over the edge and the remaining weeks laid up with a persistent sinus infection.

Now, before I go all ‘woe is me’ (too late, Monica) I just want to say I still wasn’t poor off. My RD didn’t really flare up and I was still mobile. I was just beyond fatigued. I slept most of the day (as seen on my sleep tracker) and didn’t have any energy except to go to work and care for the pets. It felt like ever since I missed the infusion my body played catch up, and not very well.

I seem to have a new “normal” but what’s interesting is I don’t feel flared up. I still don’t feel like my RA is very active. Sure, I still have stiffness in the morning and pain in the evening but my condition is like a little gnat at the back of my head. I’m aware of its presence, it’s annoying but it doesn’t bother me enough to do anything about it.

Chronic fatigue

I just feel so ridiculously tired it’s comical. There is chronic fatigue with an autoimmune condition like Rheumatoid Arthritis/Rheumatoid Disease. It’s very tiring when the body constantly fights itself. TAKE A BREAK, WHY DON’T YOU AND LEAVE ME IN PEACE! But, what I’m feeling is different. It’s pure exhaustion and one that can’t be eradicated by naps or a good night’s sleep.

A new lifestyle with RA?

Is this my new lifestyle where I am so tired I can’t do anything more than work? The new routine that doesn’t include seeing my friends and completely isolating myself from the world? (Bonus that it’s happening during my favorite time of year…UGH) Probably not, hopefully not, but unfortunately this has been my every day since mid-September.

I’m sure (though not 100% positive) that outside factors triggered this exhaustion and not my RA alone. I got really, really sick. After some quick medication changes the cold cleared up rapidly. I have chronic sinusitis so any illness quickly turns into an infection. Unluckily, this sinus infection never really happened. It brewed under the surface for weeks but I couldn’t start antibiotics because there was nothing to fight. Finally, eventually, the sinus infection hit a head and I treated it.

I felt great and didn’t get sick after my infusion this past month but over the last couple of days, I have a nasty cough and runny nose! …I’m going to blame the weather on this one because I don’t feel sick. I just feel tired, again.

Body, I love you, but I would prefer this lethargy is not our constant companion through the season.

And now that I’ve vented for over 500 words, how about you? Does your body or condition go through phases like this? Is mine due to the RA or just a bad Fall hand?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • jdaph
    3 months ago

    Yes,, oh the ups and downs of R.A. /R.D. Ive been struggling lately as well, winter in Minnesota,, ugh,, also have had a new symptom show up for the past three weeks,, my lips are burning, blistering, chapping, splitting, and nothing helps, in fact everything over the counter only burns,, so I stopped methotrexate, which my rheumatologist suggested, so now on nothing, its all I can do to work, the very few hours I do work, and keep up at home a little bit and take care of kitty cats.. I am so overly exhausted all the time.. and its so unpredictable as to what I can accomplish each day.. Ive lived this way for nearly 40 years,, .

  • starscream
    3 months ago

    I have once taken a prednisolone 6 pack to defeat RA exhaustion a few days around an important presentation. That worked but the malaise returned afterwards.

    It helps me to sleep alot. I literally slept 8pm to 7am yesterday which gave me enough energy for a one hour train commute to a 9am to 6pm workday. I can’t do that every day though! Today I’m working from home and not getting much done. But yesterday I had a very productive day.

  • adramsey
    3 months ago

    Exhaustion is my constant companion. Even when I’m not in pain, I’m tired, but exhaustion goes further than just tired. It is a burning need for sleep in the same way a person stranded in the desert burns for a drink of water. I can feel it hammering the backs of my eyes right now. And yet there is not enough sleep in the world to cure it.

  • Lawrence 'rick' Phillips
    3 months ago

    I require more and less sleep than when I worked. I take a nap most days but sleep less at any one time 3 to 4 hours maximum. When I worked I was exhausted 24×7 so I understand. When I stopped working and let my body adjust to sleeping and being awake in a less regimented way I gained some quality time, but I sleep more and in odd ways. (It drives Sheryl up the wall)

    So I do not have any suggestions other than do the best you can, and when you have to lay down, go with it. After all what choice do we have really?

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