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15 Things I Wish Others Knew During a Pain Flare-Up

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Things can get crazy during a bad pain flare. The “pain brain,” as I like to call it, is in full effect and vastly limits my capabilities. My attention span and patience are nonexistent. Every day of a flare presents challenges, emotions, limitations and frustrations that many with chronic pain have to deal with regularly. I hope this list reminds you that you are not alone and I am fighting with you, and it proves to be somewhat cathartic as you read it, because it was cathartic for me to put my thoughts and feelings down on paper.

1. Sometimes, there is no cause.

There isn’t always a moment where I know, “Oh, this is going to send me into a bad flare.” If I did know that ahead of time, I would steer clear of just about anything that could set my body off. Sometimes, I just wake up and I don’t know if it is just a bad day or the start of weeks or months of debilitating pain. There are times when I am in the midst of something where I just know the next few days or weeks will be bad. There is nothing quite as bad as knowing that whatever I am doing will cost me for weeks to come.

2. I don’t know when it will end.

I have flares that last two weeks and others that last upwards of three months. Sometimes I wake up and the pain has lessened and I am left with the “flare hangover” of severe fatigue and brain fog. Give me a few days and I can be back to my 100 percent. (Please note I said my 100 percent, which is not the same as a healthy person’s.) Other times, I get admitted to the hospital. I receive infusions or steroid treatments in an effort to break the cycle. I try new treatments or medication combinations. Other times, my doctor just tells me to rest.

3. It can go away as quickly as it came.

Sometimes, I wake up and the increased pain is gone. I return to my baseline pain. Why? I don’t know. My body fought it off? My body adjusted my pain tolerance and can now handle the increased pain? Who knows. But, I am so grateful when those days happen, however they happen.

4. I don’t want to “waste” my medications in case tomorrow is worse than today.

Say I wake up at a eight out of 10 pain. I have abortive medications that can lessen that pain and make it more tolerable, but, I am only allowed to take them so many times each week or each day. What if tomorrow is a 10/10? I will be kicking myself for using the medications when I was at an eight.

5. I wonder, “why me?”

I feel like this doesn’t need further explanation.

6. It takes so many more spoons to do things than when I am at my “normal.”

When I have no choice but to leave the house or do something, it is far more taxing than normal. I can only be up and active for two hours versus my normal eight. And if I am not back in my bed at my time of expiration, you can expect me to collapse right where I am. Literally. Like, when the clock strikes midnight and the carriage turns back into a pumpkin, the gown back into rags, and the horses back into mice. My body goes from capable to incapacitated in the blink of an eye.

7. I have zero patience. For anyone. For anything.

Being in constant pain wears on you. There is nothing I can do about it. Having no social life, being unable to leave the house, lacking human contact for weeks on end tends to make your tolerance run pretty thin. My house becomes my prison. My pain, the guard preventing me from leaving. Ask yourself, would you be in the mood for any demands? Drama? Lack of compassion or empathy? Pushy bosses or friends/family? Probably not.

8. I cry. Like, a lot. Often alone.

It’s OK. I am not saying this to make you feel bad. I am saying it so you realize how difficult flares are on me, not just physically, but mentally. It could be my own pain, some sappy movie or missing out on activities. I am overly emotional and charged so the tears come far easier.

9. Sometimes, all I can do is breathe.

I can lose all my independence in a bad flare. There have been times my mother or fiancée have had to shower me. Help me to the bathroom. Take care of my dog. Help me put on my clothes. There is nothing that puts your pride in check like having to ask your significant other to carry you to the bathroom or wash your hair.

10. Sometimes, I don’t leave the couch or my bed for days.

Sounds kind of pitiful, but it is completely true. I get up to use the bathroom and that is the extent of my physical activity. I will carry an armful of water bottles to my nightstand or side table so I don’t have to repeatedly get up for water.

11. I won’t eat.

I have no energy to do anything except exist. The thought of getting up to go to the kitchen and cook something is excruciating. Calling to order takeout would require looking at a menu, making coherent sentences to order and then answering the door. Nope.

12. I try to weigh the cost of what I did in the days leading up to this.

I try to figure out how much things will cost me in advance and plan accordingly. Then, there are the flares that are unexpected, and in my opinion, unwarranted. If I knew that one day of fun would cost me four days on the couch, I may choose differently next time.

13. I wonder what I could have changed.

I curl up in my blanket and wonder had I gone to bed earlier, not eaten as much junk food, taken a nap during that long day or just simply said “no” if I would be in this condition.

14. I try to rationalize my pain.

It never quite works. I try to validate myself, even though I shouldn’t need validating. I list the things I did the day before, like a checklist, to determine if I deserve the rest I am taking. If I feel like I didn’t do a lot and am in bed because of it, I feel guilty. If I did a lot and am in bed, I don’t feel quite as bad, unless I had to cancel plans or call in to work, but that is another beast entirely.

15. It’s not you, it’s me.

It really is. If you speak to me or see me on a bad flare day, I am antisocial at best. And it isn’t anything you said or did. It is 100 percent me. I am tired, hurting, frustrated, possibly guilty and/or angry depending on what landed me in this situation. It isn’t your fault and I am sorry if I seem grumpy. I promise you did nothing. My body did.

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Thinkstock photo via Yuliyart.

Originally published: October 31, 2017
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