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The Fear Never Really Goes Away

My journey with RA has been fairly easy once the disease came under control. I was diagnosed in 2007 after a horrendous seven months where I seriously fantasized about cutting my arms off just to get relief from the severe pain and dysfunction in my hands. The only relief I experienced was from steroid injections straight into my joints.

My first rheumatologist was great and we worked together very well. She was thorough and checked all my big and small joints. My current rheumatologist seems to skim over the body parts much more quickly. Kinda like the difference between reading every word, savoring each syllable, and speed reading.

To be fair, I chose my current doctor very quickly after the previous doctor retired because I was anxious to find someone who could continue my treatment plan and be willing to let me be somewhat in charge. When I came to Dr. G., I had already achieved near-remission through aggressive treatment with Rituxan and methotrexate.

An emerging fear of RA progression

But the last year has me thinking. Last December I had an unidentified infection that caused my lymph nodes on the left side of my neck to become huge, swollen, and painful. A few weeks later I developed a really bad cold that hung around for weeks, after which I had a mild MS relapse — the first in 50 months. This summer I got sick again with something that caused a high fever for about five days and lots of achy, muscle pain. Then, I developed a case of episcleritis which still hasn’t cleared up entirely six weeks later.

I saw Dr. G and she agrees that RA caused this case of episcleritis. It’s like RA needed a place to attack and my eye seemed to be the most attractive weak spot. At the time I was mostly annoyed; not so much fearful. Then my blood work showed elevated liver enzymes, probably from the unidentified infection and all of the Tylenol I took. My liver enzymes came back down to normal a month later so that’s fine.

This weekend, however, joints on my right index finger (the proximal interphalangeal and metacarpalphalangeal joints) became painful and visibly swollen. My right elbow has been sore for about two weeks as well. I took some NSAIDs and used an ice gel pack to relieve the pain. Today there’s only a bit of stiffness, so I’m okay.

Fear of worsening RA symptoms

But now I’m wondering what’s going to happen next, and when. I’ve had it so easy for so long. Dealing with only occasional, minor pain, stiffness, and swelling has been really nice since I started using Rituxan in 2009. During that time, I haven’t dealt with unexplained infections or sickness. I’ve had flares, but they always resolved in a week or so. This case of episcleritis doesn’t seem to want to go away and signals that my RA has taken an extra-articular turn.

What’s next? Now I can’t get the thought out of my head that my RA has become active once again. I’m afraid of RA attacking my organs or flaring with great relentless abandon. I really don’t want to experience the excruciating pain that I used to have.

Then I’m embarrassed of my fear because I am so very fortunate. I have had RA for at least 10 years and here I am complaining about the awakened fear of what RA ‘might’ do. Sometimes I feel alone in my medication-controlled, near-remission case of RA that has caused very little permanent deformity or bone erosion.

I hope I’m not alone in admitting a fear of the future. No matter what you might be experiencing in the present, knowing what ‘could’ happen is frightening. I just want to go back to ignoring RA.

What causes you to become afraid? I look forward to reading your thoughts and stories.

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


  • Wendy
    9 months ago

    YES!!! This article nails what I’ve been feeling lately. TOTALLY NAILS IT!

  • Richard Faust moderator
    9 months ago

    Hi Wendy. Sorry to hear you have been struggling some with the fear of what may come. It is completely understandable, but hopefully you can coral it. In this article our contributor Nan writes about the necessity and positive side of fear – it alerts us of danger, as well as the helplessness that can come with the type of fear RA can bring on: While maybe easier said than done, she writes about embracing/accepting the part of fear that protects you and seperating it from the fear of anxiety. Wishing you the best and know that this community is here for you. Richard ( Team)

  • Alesandra Bevilacqua moderator
    9 months ago

    Glad to hear this resonated with you, Wendy! Thanks for being in the community with us. – Alesandra ( Team)

  • Melalucci
    9 months ago

    I just think, what will it be like when I’m actually “old” instead of my body just acting like it’s old?

  • Franki King moderator
    9 months ago

    I always think about this! I’m right there with you, @melalucci. -Franki ( Team)

  • Alesandra Bevilacqua moderator
    9 months ago

    I hear you, @melalucci! – Alesandra ( Team)

  • GramaPo
    1 year ago

    Me too. Having ❤️ Issues right now…could it be due to RA/Methotrexate?? Tests being run…

  • DesertStormTrooper
    3 years ago

    RA, and the multitude of other ‘autoimmune’ types of diseases are insidious, debilitating and definitely fear worthy. I have been dealing with RA for less than a year, but understand fully the fear that creeps in when symptoms flare and you are left wondering what will happen next.

    If these types of diseases only affected a single area of your wellbeing, it might not be that bad. However, these diseases can affect you system-wide, even causing different symptoms from one day to the next.

    I have used only supplements and natural medicines in my fight against this monster, and am currently left with only small remnants of symptoms. But…the fear is still there. I don’t know for sure what my future holds, or if the treatments I have chosen will continue to work as reliably as they have so far. And, with that uncertainty, comes fear. Unfortunately, my wife shares that fear as well, constantly worried that I might relapse.

    But, for today, I’m good. I’m on top. I feel it in my system. I know it’s there, just waiting for an opening to mount an attack. But, my supplements and natural medicines, are allowing me to live normally today, without the extensive pain and inflammation that the disease would like to bring.

    So today, I simply thank God that he has empowered me with the ability to research my illness and deal with it in a natural way that is gentle and effective, allowing me to live a normal life and continue working and caring for my family.

  • Lisa Emrich author
    3 years ago

    Thanks so much for your comment. I can remember how much extra uncertainly there was when I was newly diagnosed. Of course, there was relief for finding the cause of horrendous pain and joy that there are effective treatments. But there was also the worry that treatments wouldn’t work well enough.

    I’m so glad that you are doing so well. You truly are blessed with the ability to do your own research and learn about this disease. Your wife’s worry is understandable. When things are going well, my husband tends to worry much less nowadays. We know that whatever comes, we can face it together.

    Best wishes to you and your family,

  • tckrd
    1 year ago

    This was wrote 2 years ago. How are you today?

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