Help me, Lupus patient with questions
Hey. I’m new here so I don’t know how this really works, so bare with me. I was diagnosed with Lupus and Sjogren’s syndrome. After years of going through absolute misery. I didn’t understand what was happening to me. If I went out in the sun, I’d be sick in the bed vomiting for a week or two after. It took years before I was smart enough to realize it was the sun causing it. I go through these periods of feeling so bad. I’m on meds bt I really need someone to help me understand. Not all my symptoms are found on the web. Anyone with some experience with this willing to help me?
Hi
,
Welcome to the community!
We're glad you found us.
As we wait for others to chime in with their personal experiences, I thought I'd share a few articles that may provide some helpful information: https://lupus.net/symptoms and https://lupus.net/basics.
In the meantime, please don't hesitate to reach out with any specific questions or concerns.
My best, Doreen (Team Member)
I have both as well. Hospital for over a month in 2014, not dx'd for sure until 2016. On plaquenel and methotrexate (shot once a week) everyday I wonder what lupus/sjogrens is gonna have in store for me. I've become a lump in my chair. Pain is horrible. Have arthritis in neck, shoulders, hands, hips, lower back and feet.
-Hi Vicki,
Thanks so much for being a part of this community and sharing your experience.
Living in Arizona must be extra challenging.
Have the fusions provided some relief? ~Doreen (Team Member)
So sorry to hear of all the issues. I hope you can find ways to get out some even if it's just for a walk to the mailbox. I know it can be so hard with the pain. I hope today is a better day for you. ~Racquel~ Team Member
Hi
Amy Tay some of us will have storage symptoms that really can't be explained. When I use to run this was before my diagnosis I would have pain on my left rib I still do today I found out four years later I have colongenous colitis it was a symtoms even before I was diagnosed with lupus and bowel symptoms yikes ouch I don't google often anymore I mostly rely on drs and groups like this. This probably doesn't help much hugs to you💜Thanks for sharing. We are happy you found us. Do you have any side effect from any of your medications. I love the hashtag #lupusstrong. ~Racquel~ Team Member As of right now no side effects from the Plaquenil. The Acterma does cause me to have a headache a few days before it’s due and I do my injection. I’ll take that compared to the sides effects of another I was on. Thank you, we’re lupus strong along with a few others.
If your on meds, or even if you're not. Sun is not your friend. I have to wear long sleeves 🙁
I can agree with this so much. I hate being fully covered bc a it looks silly, but b it saves from the sun. But I think it also makes me hotter faster. So it’s 6 of 1, 1/2 dozen of another. Lupus lives to make out lives miserable I feel sometimes.
Amber B, RN (lupus.net team moderator)
