Hello!
Hello Everyone! My name is Pamela (Pam). I am 43 years old and I was diagnosed with SlLE lupus at 16 but got sick at 15. I was born with Cerebral Palsy and use a motorize chair. Cerebral Palsy is when the brain send too many or too little messages to the muscles. Due to the flare ups my disability has changed. Also, I have both diagnosed with Sjogrens, fibromyalgia, depression and anxiety. I am lucky enough to live on my own although I have a caregiver for 8 hours a day.. I have a wonderful boyfriend of 19 years and my one year old fur baby . A girl tabby cat named Brooklyn. I am recently have been in a fare after being fine for 12 years. Any tips about any new info, or meds are greatly appreciated!
Hi
-Pamela,
Thanks so much for introducing yourself and sharing a bit of your story (and beautiful picture).
I'm saddened to hear you are having a challenging time.
Flares can be so painful and unpredictable. Depending on the severity, some people with lupus need treatment daily while others only need it during a flare.
This article may provide some helpful information: https://lupus.net/medications.
In addition, we always recommend reaching out to your healthcare provider with any new, prolonged or changing symptoms.
All my best, Doreen (Team Member)I have fibro and sjorens and dermatomyositis. Lately my flares are
More often and I have several prescribbed creams for rash but I can’t handle the steroids anymore they make me feel horrible I have learned that noxcema and dandruff shampoos every other day on rashes on my body help me idk if it’s just me however it’s been a good accidental discovery. I’m curious if anyone has issues with rapid heart beat and low blood pressure that causes fainting as well as needing the restroom and a bucket at same time for days at a time during flares these are newer symptoms for me and they want me to do a flip test and have a nerve in my neck tested which I don’t really want to do I’m so tired of being poked and blood draws,
I'm sorry you are going through these increased flares.
I have not heard of the Noxcema and dandruff shampoo trick. Perhaps others might have and will chime in here. My guess is if it is providing some relief (and not harmful) yay for you.
We always recommend bringing any new or changing symptoms to your healthcare provider's attention. If you haven't yet I would reach out with the concerns you mentioned.
Wishing you all the best, Doreen (Team Member)
Hi,
(Pam), and welcome to the community! I just wanted to say hi and I am sorry you are dealing with a Lupus flare all of sudden. That just stinks. I hope you and your doctors are able to find the right treatment to bring you some lasting relief. And I am glad you have your boyfriend and your sweet kitty Brooklyn to offer emotional support and love on the good days and the not-so-good days.
Best, Erin, Team Member.
