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4 Things I Do When My Lupus Pain Becomes Unbearable


I have been trying to get used to the pain that goes along with lupus. The morning stiffness, the swollen joints, the muscle tenderness, the nerve pain. Unfortunately, lupus is an ever-changing and unpredictable disease.

I have noticed that I have new symptoms all the time. My newest comes with the forthcoming cold weather and it is practically unbearable. My whole upper body, back, chest, shoulders, and arms ache. It’s not an ache like you just worked out or lifted something heavier than you are used to. It’s the kind that makes you want to cry, vomit, scream and faint all at the same time. Ironically, the only thing that keeps me going is to keep moving.

When explaining my pain to someone, I usually explain it in three levels.

The first level, which is mostly a daily occurrence, is bearable, and can be held over with pain medications.

The second level, kind of my “middle ground,” is when the pain goes past the medication, but I need to rest regularly and take breaks until my energy returns.

The third level, my “evil” level, is where I am in so much pain that I have to keep moving. I clean, I pace, I clean more, I pace more. I cry, I take more pain medications, I cry some more. It goes on and on for days till the flare finally subsides.

Unfortunately, the third level, my most resent state, makes me unbearable. My family stays away from me for fear that they will set me off. I don’t bring my friends around so they don’t have to see what is going on and not want to support me or my pain, because I am not myself at all. I become rude and blunt, making my coworkers uncomfortable too.

So when the pain is unbearable, and, like in my case, you are unbearable… what do you do?

1. I have learned to focus on the pain. When I felt it for the first time, I would sulk in it, let it engulf my whole life and everything around me, causing it to worsen. Meditation, breathing exercises, and a clear mind can go a long way.

2. I make sure I get some quiet time to let out my excessive feelings. Holding in all the anxiety and anger can make you force it on other people and make it worse. Writing, reading, even window shopping on the internet can relieve some of the stress.

3. I make an effort to not contact anyone through talking directly, but by text or email as need be. That way I wont get easily offended or show my emotions abruptly, which may escalate any anxiety.

4. Lastly, I make an honest effort to acknowledge that I am evil when I’m in serious pain. You may laugh, but I have almost lost my husband due to me not owning it in the past. I apologize, I backtrack, I work on it. I lose my filter when its unbearable, so doing this is a challenge – but its worth it.

When the pain is unbearable for you, find your way to soothing yourself. Be it with a passion, with family, or even with sleep. Anything to find peace. And hopefully you don’t become the “Wicked Witch of the Midwest” like me. But if you do, just remember to apologize and watch your manners. The people around you are there because they love you, so let them be there for you.

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Thinkstock Image By: AndreyPopov