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RA symptoms, treatments, and dealing with flares costs a lot of time

The RA Time Suck

Rheumatoid Arthritis (RA) is a drain in all regards; the pain and fatigue it causes drain away energy; the medical care as well as lost wages and opportunities it often involves, drain away money; its symptoms and treatment both drain away time.

RA and derailed plans

A flare is perhaps the most obvious source of RA time suck. I can have detailed plans made weeks or months ahead of time, but like a vigorous shake on an etch-a-sketch RA will erase my itinerary by rendering me unable to do anything. The increased pain and fatigue of an RA flare can make it hard to get out of bed, much less leave the house. RA has grounded me many times, causing me to miss work, trips, special events, and what-would-have-been productive weekends. After a flare, I always feel behind after the days, or in some cases even weeks, of being able to do little more than get through the day.

Infections impact life with RA

Not only do the symptoms of RA steal away time, so do the frequent illnesses that often accompany it. As RA in an autoimmune condition, those of us with this disease tend to get sick more often because our immune systems are busy sending friendly fire at our joints and tissues instead of focusing solely on germs and viruses. Furthermore, many drugs used to treat RA are immunosuppressant drugs. These can be very effective in limiting the immune system’s attack on one’s body, but they also reduce the immune system’s ability to do the job it is designed to do. This leads to even more colds, flus, and infections, which can land me in bed or on the couch even when I’m not in a flare.

Aside from the immunosuppressant impact of RA drugs on the body, medicines used to treat the disease can involve a wide range of side effects. I’ve been on drugs that have caused fatigue, sleeplessness, and nausea; one medication caused severe vomiting and I had to discontinue taking it. RA itself can make us feel awful and get sick more often, and the drugs used to treat it can make us more susceptible to illness and/or make us sick. Meanwhile, the clock keeps ticking, the world keeps turning, and I often wonder how I’ll catch up with all my responsibilities.

Time-consuming medications

The time spent on receiving medical treatment also nibbles away at my calendar. When I’m doing well, I have check-ups with my rheumatologist every three months. This frequency increases with my disease activity, so some years I may have twice as many rheumatologist visits. In addition, I receive Orencia infusions, which require me to visit the infusion center every four weeks. Depending on how busy the center is, I’m there anywhere from one to two hours, not counting travel time. In addition, I’m also on Plaquenil, which can cause toxicity in the eyes. Therefore, I have to visit the ophthalmologist every six months for field visions tests and an exam so that any toxicity that may develop is caught early. I also see my gynecologist more than the standard annual visit due to the frequent yeast infections I get as a result of being on immunosuppressants. Similarly, I see an ENT for recurring sinus infections, and last year a bout of whooping cough I contracted required about five visits to a pulmonologist. All of these various appointments add up, eating into both my sick leave and my free time.

The impacts of RA are so multi-faceted and far-reaching, creeping into all areas of life. Those of us who manage to meet our major goals in spite of the disease often do so on a different timeline than we would if not contending with a chronic illness. While I have thus far been able to lead a fairly “normal” life, my timeline has certainly included spans where I accomplished little other than survival, these little black holes of lost productivity that punctuate my life.

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

  • wannabe-healthy
    2 years ago

    Tamara, Your article really hit home for me. In fact, I’ve been revisiting the number of doctor appointments I have because I absolutely believe I so often become sick because I go to the doctor so often. It is time I would much rather be using for something else productive.
    So far with seropositive RA, I have been diagnosed with mild non-smokers COPD, bouts of pneumonia or bronchitis, bladder retention which have caused numerous bladder infections, high blood pressure, sinusitis (finally had sinus surgery), narcolepsy which has caused me to not be able to drive. I went to sleep behind the wheel twice, winding up on the wrong side of the road. By God’s grace, no one was coming.
    I have had so many operations that have left me feeling like a bionic woman due to metal fusions and joint replacements.
    I finally have talked to my family doctor and asked if he could keep me on some of the medicines I normally get with a specialist. He has agreed because he sees me coming in and feeling so run down. Of course I will continue to see my rheumatologist.
    I also found out I have degenerative disc disease, and have had 5 operations. When the neurosurgeon told me it looked like I was going to have to have yet another surgery, I cringed and asked him wasn’t there another way?? So now I have a neuro-stimulator which has been a success (I count as a silver lining in my dark cloud).
    It does seem there is a massive vacuum cleaner “sucking” away all my time to travel, enjoy my grandkids, visit old friends, and just plain enjoy life.
    Don’t get me wrong. My husband and I have traveled a lot (with me often having to fly home if we’ve taken a car trip), I go to my grandchildren’s activities as often as I can, I visit my mom in a nursing home if I’m well and the home hasn’t quarantined due to flu or other sicknesses. But the fact is, I’m no longer a teacher. I don’t get to do the job I’m qualified for, and worked so hard to become.
    I won’t give all my time to RA though. At least not yet. When I do have a day I have energy, and the pain is not too terrible, I will enjoy myself and others. Life must go on, and at this time I won’t allow RA to cripple my spirit. Life is too short.
    All the reasons above are why I had to leave teaching elementary school. Gosh, I miss the smell of the school, the 4th graders coming in class hugging me, the fellowship with colleagues. Right before I was diagnosed, I received my National Board Certification and had improved my abilities in the classroom greatly. I now keep all those memories in a “box”, and in my heart.
    I will hang on to all the good things, and deal with whatever comes my way (and I’m a bit fearful of what is to come). Every good moment is one to cherish.

  • Tamara Haag moderator author
    2 years ago

    Hi Wannabe-healthy, thanks so very much for sharing your experiences and your perspective. You are most definitely an RA warrior! (And a few other types of warrior as well.) I am so inspired by your determination in the face of so many diagnoses/symptoms.(By the way, in case it’s of any interest we have a sister site for COPD: https://copd.net/)

    I’m so glad that your primary care doctor has listened to you and is trying to lessen the burden of your multiple appointments, and that your neurosurgeon listened to you about wanting an alternative to surgery. You are a powerful self-advocate, so pat yourself on the back for successfully asking for what you need in the midst of exhaustion and pain. Very impressive!

    I’m sorry you’re not able to do the work you love. I’m glad to hear that it sounds as if you get to see your grandchildren fairly regularly, as I have no doubt they will reap the benefits of your skills and talents as a teacher. I have also had to adjust my career because the stress and demands of the work I had the most passion for (being a school social worker) kept me sick and in flares. It’s not the same as your experience, but I only mention that to say I have an inkling of the “what might have been” feeling that one can feel while looking at the divergences in one’s life path that RA can cause.

    Thanks again for sharing your story and your outlook on life. I hope you’ll continue to do so any time you feel so inclined.

    Wishing you all the best,
    Tamara

  • Meg81
    2 years ago

    Thank you for this article. RA sucks lots of time from my life at many unexpected times. It has altered my life in ways I could not have imagined. The most frustrating factor with the “time suck” is that some of my doctors think I’m a hypochondriac with a yeast infection here, a kidney infection there. The two most frustrating things for me are: 1. If I complain about fatigue I’ve gotten the, “Alternate activity with rest.” Are you kidding me? I work full time in a special education program.
    2. If I complain about fatigue or new symptoms, I often get, “Well, your labs are stable.” Grrrrrrr!

  • Tamara Haag moderator author
    2 years ago

    Hi Mary,

    Thanks for sharing your thoughts and experiences! And “Grrrrrr!” is right! Is there anything more infuriating/frustrating that feeling awful and being told by an “expert” that you shouldn’t be feeling so awful?

    I’m sorry to hear that some of your doctors really don’t get it. I’ve lived in the same town forever, so over the years I’ve been able to change doctors who just don’t get it and keep the ones who do. My gynecologist, ENT, allergist, endocrinologist, and ophthalmologist all regularly discuss the interplay of RA with whatever symptoms/medications fall under their area of expertise. However, that has been a process that has taken years (as well as some post-visit tears in parking lots after visits where doctors dismissed my symptoms and concerns), and not everyone lives in an area where they have doctors to choose from, and it’s also time-consuming to find a new doctor. In case this is of any interest to you, here’s an article with some tips on finding good doctors: https://rheumatoidarthritis.net/living/finding-excellent-doctors/.

    I certainly understand the fatigue issue, and the difficulty of making it through a hectic day at school caring for high-needs students and having any energy left for yourself. You may find you can relate to this article about fatigue: https://rheumatoidarthritis.net/living/tired-of-tired/.

    Finally, I hate the “your labs are stable” line! I don’t care what my labs say if I feel awful! I also wrote an article about that frustration, as I’m seronegative and always “looked good on paper” until I was given the Vectra test, which finally reflected on paper how I was actually feeling: https://rheumatoidarthritis.net/living/testing-testing-1-2-3/.

    Thanks so much for sharing, and please continue to do so anytime you have an experience, question, or concern you’d like to share. We’re glad to have you in our community!

    All the best,
    Tamara

  • judy_c
    2 years ago

    Thanks for posting this – it makes me want to cry knowing that someone gets it! It’s the fatigue that is killing me right now, walking up feeling like I’ve been hit by a truck, with a full plate of responsibilities ahead for the day. I look fine so it’s hard for others to understand. ugh

  • Tamara Haag moderator author
    2 years ago

    Hi Judy, Thanks so much for sharing your thoughts! I’m glad to know you found the article helpful. I certainly know what you mean about fatigue. You may be interested in reading this article I wrote about my experience with fatigue: https://rheumatoidarthritis.net/living/tired-of-tired/. Thanks for being in our community, and please continue to reach out any time you have a thought, experience, or concern you’d like to share. Wishing you all the best, Tamara

  • Lawrence 'rick' Phillips
    2 years ago

    Those 11 hours I spend every 4 months having my infusions are the among the,,, well I wanted to say happiest,,, but….

    I think the worst RA time waster is the down time I have in the mornings. It is just so darn difficult is to get things going before about noon. Ugh.

  • Tamara Haag moderator author
    2 years ago

    Hi Rick, Yes, you are right about those slow mornings – great point! Thanks for sharing! Wishing you all the best, Tamara

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