Chronic Illness on Yik Yak | ATTENTION LUPUS FRIENDS: Men and women alike, I am begging y’all to, at least for a few days, try taking Midol. Yes, the period pain pill. It has worked like no other pain killer has, for any variety of lupus issue (stomach, joint, etc.)

Yik Yak

Download

Join communities on Yik Yak Download

Chronic Illness 1d

ATTENTION LUPUS FRIENDS: Men and women alike, I am begging y’all to, at least for a few days, try taking Midol. Yes, the period pain pill. It has worked like no other pain killer has, for any variety of lupus issue (stomach, joint, etc.)

Anonymous 1d

For anything rlly midol is the miracle worker. It’s Tylenol and caffeine with a muscle relaxer - meant for period cramps caused by muscle contraction but it can help with a lot of other muscular and nerve pain

Anonymous 1d

(And friendly reminder to not take it alongside Tylenol or generic acetaminophen, as it contains acetaminophen in the ingredients.)

Anonymous 1d

Hi, your DMs are off. My sister-in-law was recently diagnosed, about 3 months. Her flare ups are so bad, she's in the ER every other week it feels like. She’s always in so much pain and her rheumatologist scheduled to see her every 3 months. Isn’t very helpful. Was it this bad for you when you were first diagnosed? I’m just so worried … also, I’ll tell her about the midol. Thank you

Anonymous

#1 1d

Hi!! Turning my DMs back on for this comment in case anyone else wants to reach out but I’m about to DM you!

Anonymous

OP 1d

Actually, it won’t let me DM you either. I was diagnosed about 5 years ago and unfortunately have not been very responsive to treatment. I am allergic to hydroxychloroquine, the first line of defense they put you on, and have tried lots of other things since. This is NOT the case for everyone, and a lot of people reach something close to remission much easier than me. (1/?)

Anonymous

OP 1d

But yes, it was that bad and to be honest still is. To be frank about it, you develop a higher pain tolerance and eventually learn to read your body and know what is severe and what is normal, and learn what doctors can treat and what they can’t. If I did not have diagnosed the “everything sucks all the time” disease, I would probably be at the ER every other weekend. (2/?)

Anonymous

OP 1d

Finding a good rheumatologist is important. My first wasn’t the right fit. Make sure she feels seen, heard, and is comfortable with the treatment plan, ESPECIALLY as a woman with an invisible illness. It can be hard to be taken seriously, but getting that diagnosis is a step in the right direction. (3/?)

Anonymous

OP 1d

It is a waiting game and it really grates on your mental health. I have waited until this point to get a therapist. Don’t do that. Tell her to start shopping around for a therapist early, preferably one who specializes in people with chronic illness. They can help her get through this. Mental health becomes more critical to manage than ever, both because lupus is fucking awful and because mental stress causes flares like physical stress. (4/?)

Anonymous

OP 1d

But most importantly, know that it isn’t hopeless, and she isn’t alone. There are so many wonderful treatments in the works. There is something called CAR-T cell therapy in the works that puts lupus into COMPLETE remission after one treatment. It is in clinical trial right now and will hopefully be out in a few years. Tell her is it a HARD journey but that she CAN make it. And don’t be afraid to reach out for help when she needs it. (5/?)

Anonymous

OP 1d

Suicide claims a lot of lives of lupus patients who cannot handle the pain anymore. Tell her to just try to make it to the next day, sometimes that’s all you can do. Have grace with yourself and let yourself have the rest you need. Some days will feel like failure. You are NEVER failing, your body just can’t keep up with everyone else. There is help, and there is hope. If she needs anyone to talk to DM me and we can talk about getting in contact. (6/6)

Anonymous

OP 1d

Thank you so much. I appreciate this a lot