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Person walking along path that leads through hills and meadows to a flare

Fear of Flare

I forgot what “normal” felt like. To wake up with no pain, hopping out of bed with a spring in my step, those days are long gone…  I’ve learned to maneuver around the pain, stiffness and swelling. Adjusting my diet and taking copious amounts of supplements helped manage the discomfort but still daily activities weren’t always easy.

Meditation and RA medication

After a few months of self-managing my RA, I decided to try meditation. A round of prednisone followed by twice daily pills of Plaquenil. My rheumatologist had informed me that the Plaquenil could take up to 3 months before I would see any changes. You can only imagine my excitement when I woke up one morning and hopped out of bed without hobbling. I’m sure the pills had been gradually working but at that moment … I felt it! I was sleeping through the night, working with barely any discomfort! Miraculously I felt like me again! The “me” I remembered, the “me” I missed!!

Fear of RA progression

Fast forward to 3 months later, present day. I’ve noticed stiffness coming back in the morning, pains coming and going throughout the day. It’s not debilitating by any means, but it is discouraging.

Is the Plaquenil no longer working? Do I need more prednisone? Do I need more cortisone injections (I get these in my hands and wrists)?

Or… Is this another flare??? It gives me anxiety to think about it. Being a single mom and a hair stylist, I literally can’t afford a flare-up. I need my body to function so I can work. I need to work to pay my bills. It’s a vicious cycle.

Fear of RA will not take control

I’m an anxious person and I hate that about myself. I don’t want to live in fear of what RA can potentially cause in my future. I try to live in the present, appreciative that I can still do what I’ve always done (with a few adjustments).

I do, however, fear the flare. Fear the day the medication stops working completely, fear the day I can’t continue in my profession. I’m hoping with the help of other RA warriors I can find a way to not live in fear of what I can’t control, without letting RA control me.

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

  • Billsfan
    6 months ago

    Dear friends,
    I don’t smoke pot. They are going to make it legal here in NJ. I would use it for pain, without the THC that makes you high. I do not have the money to pay for it. Where are the legislators to help us. Medicare-Medicaid does not pay for it, and probably will never do so. This is not my thing, my medication is.

  • Billsfan
    6 months ago

    Dear David Advent, I am new here. I hope I can get back in. I am staying permanently logged in, so I don’t have a problem connecting to people here. This is a place to come to talk and perhaps get answers or at least know there are others like me. Right now, I have swollen knuckles on one hand from carrying the plastic bags of groceries (just across the street). I have had RA for 25 years. I was misdiagnosed at first. A foot doctor put a cast on my leg way back. It was agony. I had it taken off in hospital. I am afraid to do chores where moving things around or carrying groceries, doing light exercise on floor mat that the next day will bring a lot of pain. I want to start walking again, and to loose 10 lbs. Fear of pain.
    As of April, 2014 the Gov. here at the time, took all meds that contain opoids “off the shelf”. Thanks a lot pig boy. We now have a new Gov..after 8 years. To put everyone in the same boat because of abusers of opoids is a sin. I have used hydrocodone 5.7-750 for 20 years with no side effects what-so-ever. When they changed it 5 years ago, they said it was because of the acetaminophen. The manufacturer has discontinued it. I was told the new generic (I took a generic) is the same. It is not, and for 5 years I have been running into brick walls when I see my doctor. My only hope is to get an appeal through my doctor. I am not giving up. I am sorry that people die from this original genetic med., but it is not my fault. I have never ever got high, or dopey or drowsy from my med, and some days I didn’t even need it. I have also tried oxy in generic, (same thing) a placebo. Before anyone says, “I got used to it”, yes I did in order to do my chores and have some some kind of normal life. Not addicted. I just needed to vent. I hope to get some relief soon. Thank you for listening.BillsFan

  • Billsfan
    6 months ago

    I made a mistake on my dosage I used. It was 7.5, 750..not 5.7-750 (bills fan)

  • Kasey1951
    6 months ago

    I was diagnosed over 10 years ago and I did nothing! In 2013 a pain Dr. Told me I neeed to stop working or if wind up in a wheelchair. What I quit was that Dr. And the addictive pain meds. he gave me, and withdrawal wasn’t much fun but I’m so thankful I did it. 1 year later my husband killed hisself and a wheelchair and pills looked good to me. My pain sky rocketed I never slept and was ready to give up. Then i realized I wasn’t the only person looking for information about RA and what to do about it.
    I stopped sleeping in a bed, I found I didn’t hurt as much if I slept in a recliner! And I can breath so much better. I still don’t take anything and haven’t seen a Dr in over 10 yrs. But things are getting worse so I need one and hopefully they know more now!

  • Jo J
    6 months ago

    Thank you Shelbie, great article! I have the same fears. I’ve just started a 6 week of prednisone trying to bridge the time until my Biologic kicks in. 2 days in I’m thinking, “I’m back!” 4 days in and some of my pain has improved, I have energy and I’m more organized. I am struggling balancing the immediate benefits of steroids with the horror stories of their negative effects.

  • JaneHarmBarr
    6 months ago

    It is normal to fear a flare, but as you say, we cannot control it, only manage it the best we can. I have found regularly seeing my rheumatologist, taking my medications, going to an organized yoga class twice a week, diffusing essential oils, and taking the time to relax and enjoy something that brings true joy daily helps tremendously. We learn it is best to allow some things to go and we do what is most important to ourselves.

    I had to quit working at 58 years old when my body said nope, we just can’t do this anymore. It was a tumultuous time, but all things work out with time. Just breathe and do so long and slow through the nose and breathe out long and slow through the mouth. Life is still good if we let it be rather than letting the fear grip or control us.

  • David Advent moderator
    6 months ago

    Hi JaneHarmBarr,

    You’re right, with RA, you have to learn to let some things go and prioritize your body. It can be incredibly frustrating, but, as you say, everything works out over time. Thank you for sharing this insight! Know that this community is always here to support you! -David (RheumatoidArthritis.net Team)

  • JaneHarmBarr
    6 months ago

    It is normal to fear a flare, but as you say, we cannot control it, only manage it the best we can. I have found regularly seeing my rheumatologist, taking my medications, going to an organized yoga class twice a week, diffusing essential oils, and taking the time to relax and enjoy something that brings true joy. We learn it is best to allow some things to go and we do what is most important to ourselves.

    I had to quit working at 58 years old when my body said nope, we just can’t do this anymore. It was a tumultuous time, but all things work out with time. Just breathe and do so long and slow through the nose and breathe out long and slow through the mouth. Life is still good if we let it be rather than letting the fear grip or control us.

  • Lawrence 'rick' Phillips moderator
    6 months ago

    I also hate the fear of the flare. Many times I think I sit around waiting for the worst thing. Thankfully it almost never happens and when it does a round of biologic treatment or an up in my DMARD’s seem to help.

    I hope by now things have worked out and the spring is back in your step.

  • B.Hughes
    6 months ago

    I can relate to this article.I try not to let my flares control me but sometimes it just hard not to give in. I’m about to try Humaria treatment and see how that goes. You want so bad for a good day when your feet hits the floor and if you get it great but if not you learn how to adjust and try to go on with your day.

  • David Advent moderator
    6 months ago

    Hi B.Hughes, I’m glad this article resonated with you! It certainly did with me. I’m also about to begin Humira and am hoping that it will provide some relief. I wish the best for you; know that this community is here for you! Thank you for being a member of this community. -David (RheumatoidArthritis.net Team)

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