Is Life Just One Big Flare?

Is Life Just One Big Flare?

It can be very hard to know for sure if you will ever feel better. The cycle of ups and downs, good days and bad days with psoriatic arthritis tends to often leave us with one big question. Is life just one big flare? Have I been flaring for months or will things just get worse? Is there any hope that it might actually get better?

What the heck is a flare?

I find it very hard to accurately define what a flare actually is. When asked, the best that I have to offer is that a flare is a period of time when you feel worse than other times. I know, I know, I can’t possibly get more vague than that. And I often think, I feel bad ALL the time. How can I possibly know when it is “worse?”

Can you tell from blood work?

Some people find that their blood work might reveal when they are having a flare (judging by increased levels of inflammation found in the blood). But more often than not, they are the exception since many people with psoriatic arthritis don’t exhibit higher inflammation markers in their blood. Unlike many people with the close cousin, rheumatoid arthritis.

Every person is different

What makes it even more difficult to define a flare is that each individual’s experience of psoriatic arthritis and it’s symptoms is totally unique. For example, if it takes me more than two hours to get moving in the morning, then I can usually bet I’m headed for a flare day. Meaning that I should plan to get very little, if anything, accomplished. But for someone else, getting moving at all, even after more than two hours, they might consider a “good” day.

Riding the waves

The longer you live with psoriatic arthritis, you will see (at least in my experience) that there are certain peaks and valleys to the pain and fatigue of PsA. If you were to chart it, you might notice sort of a wave-like pattern. Whereas, the higher points of the chart will show you your “flares” and the lower parts will show you the days with slightly less pain. In fact, I’m such a nerd, that I did just that before my latest doctor appointment. And proudly limped my way into her office, multi-colored chart in hand, ready to talk. I figured it told my doctor a lot more about how I was doing than the stupid pain scale.

Keep the switch set to low

Another way that I often think does a good job of explaining the wave pattern of a flare is like a dimmer switch. This particular one came to my mind when I was trying to figure out if I the current medicine I was trying was working or not. In my heart, I thought that if the medicine was “working” then I would magically feel back to my old self. Alas, that was not the case. But I did learn to compare how my medicine is working with a dimmer switch.

When you have a dimmer switch, there is always electricity (pain) running to the switch. Sometimes, the dimmer is set really high, the lights are bright, and the electricity (pain) levels are super high. Other times, for example when the medicine is working, the dimmer is set lower. The lights are low and the electricity (pain) flowing to the outlet is dim. The reason I like this so much is that it really shows that the pain is always there, hanging out in the background, ready to rear its ugly head. There are times when it is brighter, times when it is dimmer, but it is always there to some degree.

Keep fighting the good fight

That’s what it comes down to, doesn’t it? It is always there. So, yes, my life might be one big flare. I will constantly be fighting the inflammation, fighting for control over my own body. But, if I have a few days when I feel like I’m NOT in one big flare, then I call that a win. For now, I’ll take it.

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

Comments

View Comments (19)
  • Rojo
    2 months ago

    Rebecca, Hi! Re your query about journaling. Many years and a small forest have passed since I was first encouraged to journal. My immediate first reactive words back then were, “Like THAT’S going to happen!”

    Fortunately for me, my mentor was long on patience and skills. I was advised to reframe any negative concepts of “discipline” into a positive, nurturing, mind-body exercise routine. Next step: intentionally commit to making this behavior a daily life priority, like eating, drinking, sleeping, etc. Choose whatever medium is most comfortable and stick with it (paper notebook, digital device, etc). Choose a daily time that I will be available, without interruption, on a reoccurring basis as if it were a class. (For me, the earlier the better as my motivation tends to wane as the day goes on despite my best intentions.)

    My response to this plan was, “I have a very busy and complicated life y’know.” And then came the devastating and enlightening reply, “Well that takes us back to priorities and commitment doesn’t it.”

    I know we all experience things differently; learn differently. I SO hope this is helpful. Thanks for your reply and more so for your posts. Rojo

  • Salbe428
    9 months ago

    I was diagnosed with Psa about 2 years ago and I just could not understand why I was so tired all the time. I was given Methotrexate. I am very alergic to it. I took one shot of Stellara and had the same symptons. It caused me to swell and retain fluid.Since I have congestive heart failure that was a major problem. My ruematologist dismissed me back to my family doc. He said since I had so many other health problems he did not feel he could help me but if I had any problems my family doc could send me back. I am so thankful for all the articles because they let me know that others have the same problems as I do. I sometimes feel like the writers have gotten insid my body and feel what I feel,and that gives me comfort.

  • bbthodges
    10 months ago

    I understand every word you say and I feel just like you do. I wish that other people not familiar with PsA could understand and give us support. Even today when I had an appt with my rheumatologist and she asked me to explain how I hurt and how hard is to get up each morning and hope that I will get better that day. She is starting me on another medicine, Orencia, since it goes to a different part of my body that the previous ones I’ve taken. It has been a long road and still trying to get the right medicine. But just wanted you to know that I am so much in agreement with you that you really don’t know always when you are even having a flare. I’ll be praying for you to have a few days of really feeling good!

  • LJK1123
    10 months ago

    I cannot tell you how much this post relates to me and how I am feeling. It’s sad that we all suffer so much but somehow it makes me feel better to know that I am not alone in my suffering. Thank you for writing about FLARES!

    I have been having the worst flare I have ever had since being diagnosed with PsA about 6 years ago. I am on Remicade infusions every 8 weeks and on 9 methotrexate weekly. I cannot tolerate prednisone except in small doses and sometimes it works, but it doesn’t for the most part.

    Sending prayers and good thoughts out to all of you who are suffering and I know I sure could use some in return!

  • bbthodges
    10 months ago

    I feel really bad for you that you are going through all that you are. when I was first diagnosed I was having to give myself injections of methotrexate which was filling the syringe with the medicine in a little bottle. I never could get the hang of it. My insurance denied a couple of tablets and my dr decided to go with the Remicade infusions since that was a proceduce rather drugs. I did that like you are every 8 weeks but stopped the methotrexate. That didn’t work well so we stopped the Remicade and started Enbrel. That worked for a few months then I had to stop that. At that time my Dr left the practice and I moved, then I was not able to get an appt with my current rheumatologist for 3 mo so I went for 3 mos with no medication at all for the PsA. Next I started on Humira and took for about a year and it didn’t seem to be working any longer so about 8 mos ago we switched to Xelanz and now that has lost it’s fizz so she had me go a month to see if I could tell if Xeljanz was helping at all. Today we decided to go with a new medicine, Orencia. Sweetie, it can be a long and never ending drama with this disease and even on medication you still feel terrible. I am so sorry that you are going through these bad times and I promise that I will be praying that you can get some relief. Hold on to someone who will support you. Maybe a spouse or friend or a sibling. You have to be open with them and give them details and know what you are going through. When my sister and brother read some of the articles about PsA, they were shocked and have certainly changed the way they look at the times when I just can hardly get out of bed. So be sure you do that too because you need to have that love and support. God bless you!

  • CathyD moderator
    10 months ago

    @ljk1123, we are sending so many good thoughts and lots of love to you!! I really hope that your flare calms down a bit soon. You’re right – there is real comfort to be found in knowing that we’re not alone. Hugs! – Catherine, Community Moderator

  • LJK1123
    10 months ago

    Thank you, Catherine! Big gentle hugs back at you!

  • Rojo
    10 months ago

    Hi Leanne, I enjoyed reading your article very much. I am fairly sure you are aware of the many highlighted articles in arthritis specific magazines, blogs, etc, relating to family and friends who “despite meaning well, don’t understand…”, and how to communicate more effectively with them. That’s not my problem. My problem is getting me to understand.
    It’s been five years since I’ve been diagnosed and started the many medicines and made necessary diet and lifestyle changes.
    I had no idea what arthritis is. Five years wondering on a daily basis, why do I feel this way this day. Is it the disease, the medicine, a “flare” so often talked about but never really explained, the flu, do I have mono, am I depressed or just lazy, should I call my doctor or a therapist, why is my vision worse, should I push on or do I need rest. A very Alice in Wonderland existence.
    Your idea of a “dimmer switch” and daily charting the results using several fields is from my POV, brilliant. Not only does it provide something I can take to the doctor. It also will help calm my mind seeing an ocean with constant waves that at times become storms that pass.
    Thank you SO much for sharing your story and ideas. Wishing you the best, rojo.

  • mich54
    10 months ago

    “despite meaning well, don’t understand…”, and how to communicate more effectively with them.
    I DO have this problem. I don’t think anyone I know really gets it. Most of them give responses that are like, yeah my leg is bothering me too, or yeah my knee hurts, or yeah I am tired too, or MY FAVE – welcome to old age! (When I started this I was in my early 30s) – Or older people will say… OH you’re young! Like you are exaggerating! It’s so darn frustrating!

  • Leanne Donaldson author
    10 months ago

    Hello @rojo! You are very right, there are so many parts to living with PsA that it is really very hard to understand, much less accept about ourselves. So much impacts arthritis from what we eat (or don’t eat), medications, and even the weather. It can be hard to know where to even begin.
    Before my official diagnosis, my main complaint was hearing loss, I thought I was losing my mind (I’m only 39 for crying out loud!). But it turned out to be inflammation messing with my hearing and apparently the same thing can happen with your eyes. It’s crazy! Charting my symptoms and paying attention to good days and bad days makes me feel like I at least have a little control over the whole situation. With all the questions and very few answers it can feel very overwhelming.
    I’ve struggled a great deal with the emotional side of PsA as well. There is an article that I wrote that I think might help you feel a little less alone with that. It is https://psoriatic-arthritis.com/living/the-emotional-impact-of-living-with-psoriatic-arthritis/

    I am here anytime to help in any way I can, but more than anything we are hear to listen and understand. You aren’t alone in this fight. Keep looking for those rays of sunshine in the storm and you won’t lose your way. Sending gentle hugs! 🙂 -Leanne, Author

  • Rojo
    3 months ago

    Thanks Leanne for your reply and link. My apologies for not replying sooner. I just now found the “Notification” bell for unread replies (my first visit to “my profile” page – a bit of a luddite I am ). I took your advice about a journal. It has been REALLY helpful. Not only for taking to doctor appointments but also, and especially, to look back months ago and see what has changed, what repeats; when I stopped or started foods, medicines, supplements; what was inflamed when, what works and what doesn’t, and much more. Keeping a journal has become one of my top five tools for coping. Many many thanks. Rojo

  • Rebecca moderator
    2 months ago

    You aren’t a luddite – the site isn’t the easiest to use (we’re working on improvements!!!). May I ask – how did you get into the habit of journaling? I’d love to start doing this (not for PsA symptoms), I just can’t seem to get into a routine to do it consistently….

  • mickey
    10 months ago

    I completely understand what you are saying. I’ve been using an “episode” in place of a flare, just seems to work for me. I really love your analogy using a ‘dimmer switch’. Its perfect. Most of the people I know will be able to relate to that.
    I’ll wish you good luck and hope you feel better but I know that ‘feeling better’ is not going to happen so fast.The good luck part is for those instances when you actually feel pretty good. I hope you have many of those days.
    All the best,
    Manny

  • Leanne Donaldson author
    10 months ago

    Hey @mickey, I love that word, episode. It reminds me of something that will pass. Like it will only go on for a certain amount of time. I may just steal that idea if it is alright with you. It has a bit of a better connotation to it I think. You are right, feeling better is all relative and I wish you many more good days than bad. Thanks for dropping by! -Leanne, Author

  • mickey
    10 months ago

    By all means, please use the episode description where you feel its applicable.
    Hope everyone has more good days than bad.
    Manny

  • AuntJana
    10 months ago

    Hi Leanne-

    I sure can relate to this article. I feel i am in one constant flare. The Otezla I am on has not gven me any real relief. My pain is constant. Getting out of bed is pure torture, the pain when I move is just about everywhere now. To accomplish any task of cooking , cleaning, shopping is so very hard. I see my Rheum next week. I am not too hopeful at this point.

    I wish you pain free moments with uour family.

  • imschmarte
    10 months ago

    Hi AuntJana! Hope you are feeling a bit better! The whole package we have been handed by fate with these auto immune diseases sucks!! I too can’t find any relief, and it is because of insurance. They will only pay a portion of the biological drugs, and I can’t afford 2000 bucks a month, so I can’t get on them anymore. What caught my eye was when you mentioned MMJ. If you ever do try it, would you please post and let us know how it works for you. It might be the only thing I will have to help. Hoping you will get out of your constant flare and find something that works for you!! God bless!

  • Leanne Donaldson author
    10 months ago

    Hello @auntjana! It is so good to hear from you again! 🙂 Ugh, that is terrible that Otezla isn’t working for you. You’ve been in my thoughts and I am so sorry you aren’t doing well. I know it is hard, but try to hang in there and I will certainly send prayers your way that you will turn the corner soon and get some relief. Please know that I am right there with you and together we will make it 🙂 I hope you can find a few moments of calm and reasons to smile. Pop in and let me know how your appointment next week goes. Sending you gentle hugs -Leanne

  • AuntJana
    10 months ago

    Thanks Leanne, it means so much to know you are praying, I too keep you in my prayers.

    I am considering MMJ.
    I am always in pain. What I take does not work anymore and in these opioid hysteria times my doctor will not adjust my dosage.

    Have you tried it? Ever consider it?

    An author on this site wrote a great article about how it changed her life, it seems she is in remission.

    I know I won’t ever be the way I was before PSA but this may be an alternative to being pain-free.

    ☀️

  • Poll