Lupus pain

Posted by terriann @twinkie23, Oct 23, 2023

I am struggling with the pain of SLE. I was diagnosed officially in 1999 and have tried numerous treatments with varying success but the pain has been more severe lately. I am currently being treated with Leflunomide, Hydroxychloroquine, Azathioprine and Tramadol for pain. I know how to soothe my pain with heat, topicals and rest, but it’s taking more of this to manage the daily aching in my body. I feel like I’m losing a battle, losing my strength and losing my creativity which is what makes me, me. Thank you for letting me voice my complaints. I rarely tell anyone how bad I feel. What’s the point?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

jgjvisions | @jgjvisions | Feb 1 1:01pm

Has anyone tried changing their diet? Wondering if it helps…. I think sugar is a trigger for pain, for me…

covidstinks2023 | @covidstinks2023 | Feb 1 6:14pm

In reply to @jgjvisions "Has anyone tried changing their diet? Wondering if it helps…. I think sugar is a trigger..." + (show)

jbjvisions, I do not have Lupus that I know of, but, Fibro & 2 other autoimmune issues.

Sugar & Caffeine make my pain worse wise.

Blessings & Prayers to you....

terrygkds | @terrygkds | Jul 17 11:30am

In reply to @jgjvisions "Has anyone tried changing their diet? Wondering if it helps…. I think sugar is a trigger..." + (show)

Celery is a big trigger for me.😬

annpeters | @annpeters | Jul 18 3:17pm

In reply to @terrygkds "Celery is a big trigger for me.😬" + (show)

I’m so sorry to hear celery bothers you! I love celery. I’ve been on the low FODMAP diet for over two months and just bringing things back in diet slowly. Celery was one of the first I brought in. I truly can’t say what bothers me… All I know is I am trying everything I can and I’m still in teeth Gnashing pain. My rheumatologist doesn’t know what to do with me. I feel bad for my GP because she’s gotta listen to me complaining. All the best to you !

nork1254 | @nork1254 | Aug 23 4:52pm

In reply to @bayhorse "Would any or all of you who have lupus pain tell me more about what type..." + (show)

Before I was diagnosed with SLE the pain would be like being dragged through shards of glass. I would stand in a cold crying from the pain. In the winter, I would stand out in the cold. Or someone in my family would pack ice packs on my back. The Plaquenil has been very helpful I also take Hydroxychloroquine. I have yearly, thorough eye exams to watch for signs of blindness. I’m sun and heat sensitive. My balance has declined which resulted in walking with a cane and surrendering my license. I struggle with extreme fatigue. The concern for blindness is because of Plaquenil. There are other options but Plaquenil does work for me.