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26 Things We Don't Talk About During Chronic Pain Flare-Ups

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When you have a chronic pain condition, flare-ups are probably a common (albeit unwelcome) occurrence. Although a flare-up is exactly what it sounds like – a “flare” or increase in pain – there is so much more to it than just an exacerbation of symptoms. Flare-ups can affect all aspects of your life, including your ability to work or go to school, your relationships with loved ones and friends, even your mental health and personal hygiene. Its impact can be far-reaching and give rise to a lot of issues that may be difficult, scary or even embarrassing to talk about.

Even though it can be tough to open up about some of the more “taboo” aspects of pain flare-ups, talking about these struggles that so many may privately grapple with can help us break down the stigmas against chronic pain and promote better understanding of what it’s like to live with daily pain. That’s why we asked our Mighty community to share aspects of chronic pain flare-ups that don’t get talked about often, but deserve recognition nonetheless.

Going through a flare-up can be incredibly stressful and challenging, both physically and emotionally, but if you struggle with any of the following issues, know you are not alone.

Here’s what our community shared with us:

  1. The havoc it wreaks on me being able to do basic things, like my dishes or laundry. My house becomes a pigsty during a flare.” – Chelsey E.
  2. How depressed it can make you feel. For me I can go from managing my depression to it feeling completely unmanageable. And the suicidal thoughts – not wanting to live forever like this/worrying this is going to become more frequent and you won’t be able to cope.” – Bethany R.T.
  3. When I’m in pain, I’m short with everyone. I don’t want to talk or even listen to someone. So I give one-word answers. I know they think I’m being rude but I can’t even think I’m so busy concentrating on breathing through the pain till it’s over.” – Trisha L.
  4. The hot/cold sweats. Yuck! I’m hot in winter, cold in summer, sweat all year round.” – Lianne B.
  5. When you wonder if it’s all in your head, despite the pain’s near constant presence.” – Kayla B.
  6. Struggling with personal hygiene. Clean hair falls to the bottom end of the priority list when it takes all the energy you have to do the basics like feed yourself and take your meds.” – Ashley S.
  7. Anxiety and sheer panic. How bad is it going to be, how long will it last, is this something new? Will I have what it takes to make it through this yet again?” – Kaia H.
  8. The relentlessness of the pain. How it is masked by pain meds and ‘acceptance’ but then it creeps up again so quickly when they wear off. It practically knocks the breath out of you.” – Marisa P.
  9. Pain brain… it’s not uncommon for me to fumble with my words and thoughts, forget what I’m talking about, mid-conversation, or I’ll go to another room to get something and forget what I needed to get on my way to going and getting it.” – Chelsea N.
  10. Do I take the pain meds? Checks bottle to see how many left. Mentally count out how many days. Take one or two. Repeat as needed.” – Ashlee E.
  11. How things are always ‘in progress.’ Projects never get done because of all the breaks I need to take because of pain, low energy and/or needing to prioritize self-care. Sometimes, I can’t simply start a task and finish it within a ‘normal’ time frame. There is a lot of starting and stopping, so it looks like nothing ever gets done.” – Sonja K.A.
  12. Suddenly bursting [out] in tears for no reason but later realizing it’s because your body felt so much pain, it just can’t contain it anymore. You could no longer recognize the pain because you just got used to it being there… until your body decides to break down.” – Ren T.B.
  13. The way it aggravates other disorders. It creates stress. Stress triggers anxiety. Anxiety triggers depression. Depression triggers poor health habits like not exercising or taking meds. Not taking care of yourself worsens other chronic conditions. Those worsen the pain. The cycle goes on and on.” – Katie B.
  14. The overwhelming pain and fatigue. It’s more than just the flare-up of symptoms, it’s your whole body. Doctors only want to talk about the regular symptoms. I’m like, ‘It’s my whole body,’ but they don’t want to talk about that.” – Rebecca J.
  15. The fear that the flare-up won’t go away and this will be my new normal.” – Charissa B.
  16. The awful feeling that you can no longer hold your children even though you should be able to. I can’t run after my kids either. Sometimes I can’t read them a story on a night because of the pain. I can’t bend down to give them a kiss. They can’t lay with me in case they jolt me. I hate those times when I can’t act loving towards them. It hurts more than the pain does.” – Danika R.F.
  17. When you can’t imagine even thinking about sex, but the most common suggestion you get is ‘Doesn’t sex relieve pain?’” – Selena M.W.
  18. The complete and utter exhaustion. Pain disturbs your sleep, and even when you are asleep you don’t get quality sleep because the pain signals are still disrupting your sleep. Everything you do is 10x harder (or more) because of the pain, and because the exhaustion makes you more clumsy and makes you move slow. You get more brain fog, can’t think straight, forgetful, I even garble my words when I am talking. And then someone says, ‘Yeah, I’m really tired too…’” – Rebecca M.
  19. I keep looking for patterns… Temperature? Barometric pressure? Stress? Foods? It just seems they’re so random.” – Stacey B.
  20. That you’re going to have to try different techniques each and every time you have a flare-up. What worked the first time may not work again for the next flare up.” – Ashley W.
  21. The tremendous shame and guilt of having to ask for help to do things that I normally can.” – Terri D.M.
  22. Having to crawl to the bathroom because the pain is too bad to walk and hoping that you’re fast enough to make it up onto the toilet in time. I don’t know how many times I’ve had to clean urine out of the carpet or off the bathroom floor.” – Harper S.
  23. When it gets bad enough that you go to the ER and they treat you like a piece of crap. ‘You’re on this pain med and that pain med, so why are you here?’” – Jeffery M.
  24. Feeling so much worse but not anyone knowing because you conceal it. People have no idea how hard your day or night was. It’s hard to go on when you had no sleep and were up in pain. Sometimes the issues are just too personal to openly discuss so it’s very difficult.” – Cassidy S.
  25. The unpredictability of it. One day I’m doing housework and the next I can’t even sit up and it lasts for days. I can’t be relied on anymore because I don’t know when they’ll strike.” – Ashley A.
  26. The loneliness. I lay there knowing these four walls will be all I see for a while. Hearing my two oldest grandkids laughing and the 5-month-old learning to squeal in the other room but I can’t be there. Then the guilt, is seeing me like this hurting them? I’m not doing my part around the house, I’m asking for too much help when my daughter and son-in-law already have the kids, house, day jobs and businesses to run. I feel like I don’t fit anymore. Then it loosens its grip and I fight my way back to just being part of life again just to have it happen over and over. I won’t stop fighting though. Don’t want to miss the joy I am allowed.” – Britt B.
Originally published: February 23, 2018
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