We are a family of 4 my husband has it I have it and our 2 boy's have lupus and do home therapy,these videos help us understand things we go through,thank you
My rheumatologist doesn't understand that men get lupus. And she said that my DS DNA test must be a false positive (to further her messed up idea that this is only a women's disease apparently). Yes, I'm getting a new rheumatologist. Unfortunately, her anti science stance has delayed me from getting treatment for months. And every day is a disaster.
Hey dude, how are you doing? I was recently diagnosed after routine doctor visits. I had chronic lethargy, low-grade fevers and pain in my knees. I had a positive ANA test and my doctor still fed me that "Men don't usually get lupus; it must be something else," garbage. I just received the diagnosis last week from a rheumatologist.
I have type 2 Diabetes as well as severe neuropathy wide spread Fibermayalgia and Carpal tunnel in both hands on top of my Lupus ..both hereditary. My mother's side is Lupus and Cancer & Diabetes. My father's side is type 1 Diabetes and Bipolar 1 disorder. I am the middle child ,I feel like a magnet that has drawn all of these disabilities except the Major Cancer genes ..knock on wood ...I am in sooo much pain ,I lost 100 lbs ,and so much of my muscle tone,severe muscle deterioration ,weakness in my upper and lower limbs ,they are giving me injections steroids and anti-inflammatories in my spine and both wrist & palms just for mobility, it has become a task just to walk, simple things like cooking or anything that involves heavy lifting, it hurts just to carry a gallon of milk ,my hair is always falling out ,my skin doesn't even pick up any pigmentation anymore ,I've become forgetful, my short term memory has gotten unnerving, and my long term has become very vast and long..PTSD from all the trauma my body and mental state has gotten to much to handle at times, I am always organizing and cleaning so I always know where every thing is ,my music and aromatherapy & a sense of humor and my Faith in God are my only things that keep me grounded 😢
As a 52 year old man with lupus, this really wasn't helpful. Comparing to women with Lupus doesn't help men understand how it specifically effects men. The only helpful point was a tag for the lone wolf group.
