Best Of
Re: Welcome to the Lupus Research Alliance community!
Hi Everyone...I have SLE and I live in South Ohio - anyone else live here?
I think forums like this are a nice way to mitigate the isolation that can sometimes accompany chronic illnesses like Lupus. I'm looking forward to chatting with everyone!
I think forums like this are a nice way to mitigate the isolation that can sometimes accompany chronic illnesses like Lupus. I'm looking forward to chatting with everyone!
Jes
6 ·
Re: Welcome to the Lupus Research Alliance community!
Thank you for the opportunity to share views, symptoms, opinions, etc with caregivers and patients like me. I was diagnosed in 2016. I have Lupus Antiphospholipid Syndrome, Kidney disease and mitral valve regurgitation. I believe I have some of the best care in the world as I live in Boston, Massachusetts. I like forums and discussions. Hope to hear from some patients with similar lupus symptoms as we are all so unique.
Happy World Lupus Day.
Borealis
7 ·
Re: Welcome to the Lupus Research Alliance community!
I think that having a supportive community is beneficial not only for the individual that is suffering from lupus but for family and caregivers as well.
thank you.
thank you.
EM
8 ·
Re: Flare up during menses?
Yes, you’re not alone. My body goes haywire 2 wks prior to menses. My rheumatologist says it’s the increased hormone levels that cause this around menses time. She also told me that I can’t take birth control with any extra hormones, so talk to your doc specifically about you, if this is the case. I’m considering getting an IUD, copper with 0 hormones. Around menses, get cold and hot flashes, body shakes sometimes, always gastro issues (diarrhea, cramping) due to inflammation, buttocks rashes only around that time. Sorry if this is TMI, but we are all different & being honest is the best way to share info. If you’re fatigue, take a nap hon - best remedy. For the rashes, believe my doc prescribed a topical steroid treatment, but can’t recall for sure as it varies from each cycle. Keep positive and your mind strong, meditate. sleep works best for me, seems to call my stress, mind & body.
mina
5 ·
Re: fasting, does it relieve your symptoms?
The task of fasting has been know to greatly help, because as Lupus is an inflammatory disease that can be aggravated and/or triggered (Flare) by outside factors, including the way our foods are processed, fasting eliminates some of those free-radicals and inflammatory elements. However, as many with Lupus tend to be deficient in some of the critical vitamins and minerals (ie Vitamin D, B, Calcium, etc) necessary to sustain optimal health, that are naturally provided in the foods we consume, sometimes simply altering your daily diet is more beneficial (ie consuming functional foods). You should proceed with cautious and if possible seek the advisement of a professional dietician or nutritionist.
Re: Fatigue with lupus
First I explained what lupus is, then I asked ask them if they've ever have the flu then I let them know that the fatigue and the pain that I have is as if I have the flu on and off.
JM
5 ·
Re: Weird hip pain?
You need to get an MRI I just found out I have avascular necrosis. I've had hip pain fie two years and I didn't complain more till just recently about the pain so my primary care put in for an MRI
sfields08
5 ·
Re: Hello I’m new here and trying to get some answers input
Have u done with anti ANA and DNA testing ?
Sidra
5 ·
Re: Waiting to see the rheumatologist and I'm terrified
Definitely list all of your symptoms before you go. That way you make sure you don't miss anything when you are there! Leaving one symptom out can make them assume it isn't lupus even if all of the others align. Lupus is super hard to diagnose so it helps to give them as much information as possible, even down to your sleeping habits. In my experience, from seeing them as early as three years old, I've learned that rheumatologists try to write off your symptoms a lot. Don't let them! Tell them how you feel, when you feel it and make it clear for them.
briannawelborn
5 ·
Young Adults Living With Lupus
Hi All - I've been living with Lupus since I was diagnosed at 18 years old. I am currently 25 and am fortunate enough to be living with mild symptoms over the years of a total lifestyle adjustment. Diet changes, sleep pattern changes, an overall more holistic approach to life. These changes alone have left me feeling isolated from my peers and the 20s community - adding on the pain and discomfort from the disease leaves me feeling like a total outcast.
I've been searching and hoping to find peers within my age group to befriend and talk to living with the same (or similar) disease. Major fatigue, hair loss, joint paint are an upside symptom to organ failure, but still incredibly limiting and difficult to communicate with my friends/peers. I'd love to talk to someone going through this similar journey. Any other young adults battling with Lupus out there?
Warm Regards,
Lauren
I've been searching and hoping to find peers within my age group to befriend and talk to living with the same (or similar) disease. Major fatigue, hair loss, joint paint are an upside symptom to organ failure, but still incredibly limiting and difficult to communicate with my friends/peers. I'd love to talk to someone going through this similar journey. Any other young adults battling with Lupus out there?
Warm Regards,
Lauren
lstallone92
7 ·
