My Lupus Story | Systemic Lupus Erythematosus

Are you enjoying the content here on "Man with Lupus" Channel? Check out another great video here ----> www.youtube.com/watch?v=fU5teJ7ztdM

I was diagnosed about 8 years ago. My hair was thinning, mu muscles and joints hurt so bad. I was told I'm getting older. I just turned 60 this past July, kept telling my Dr I don't feel well I really ache bad. I would break out with a rash in the sun. My husband had knee replacement surgery and while trying to take care of him and do my home daycare, one night I just collapsed. Went to a new Dr who Finally listened to me and said we better test you for lupus. Came back positive. My rheumatologist said I've had it for years. My weight goes up and down and can go up 15 lbs for no reason. I was told I'm eating more than I think I am. I said I'm not stupid I know how much I eat. So it will come down and then out of the blue go back up. I had shingles back in April and it put my lupus into a tail spin. Thanks for sharing your story.❤

My daughter has Lupus…. She is such a sweetheart… she has a bad days and good days. She works full-time in the hospital as a nurse. She diagnosed when she in college. Bless you! Keep strong!

Thank you, Ryan. It took me 12 years of some symptoms, a lot of doctors saying I'm a hypochondriac, and 3 years of very intense symptoms before I was diagnosed. Thank you so much for sharing your story bravely. This connects some dots I hadn't thought to connect. Thank you so much. Big love to you in your journey! Us spoonies gotta stick together.

Thank you for sharing. I was diagnosed with Lupus 2 days ago. I'm devastated of coarse but knowing the reason i hurt gives me a little piece of mind. My story is much like yours. A laundry list of things that are Lupus symptoms. I've struggled the past few years. Coming home from work and going straight to bed then spending my weekend resting in bed. The guilt and shame of not being able keep my house in order or even shower has been isolating. I have been resting so that I won't be tired yet I never have that rested feeling nor will I ever and that is so screwed up. I was always a person that could do it all and look great doing it. I'm so far from that person now. I also get the ice pick pain. I call it "electricity" it lasts for just a few seconds but it will drop me and scare me too. I know I need to get off my feet and rest. In the past when I didn't heed the warning I could be in bed for days with back, hip and/or neck pain.I beleive it started about 24 years ago when I was in my early 30's Not sure what my future holds but I'm doing my best to try to not get too bummed about it. Just trying to understand and learn what is happening and what can happen and what I can do to help myself.

Omg! Thank you so much for this video!! I only know women with lupus. I had no idea men deal with this too. My cousin is in the hospital for the 3rd time this year with a flare up. She is so strong but I know she's struggling bad with this. She has lost her hair and has had openings on her skin out of nowhere...you are awesome! God bless you and your family! Thanks for sharing.

Thank you so much for educating people... I've had Lupus for 23 years... I've learned to take things minute by minute or hour by hour.. Bless your wive for supporting you... ❤

I am diagnosed with SLE for a year now and I had the symptoms like joint pain, fatigue, fever, nausea and stiffness. Sun and stress are my biggest triggers. It’s a struggle everyday but I try to be positive but like everyone else I have ups and downs. I’m trying to keep up at work as a speech therapist for 4 hrs 3 days but it’s hard, possibly looking into another branch of work that’s less stressful, thank you for creating this channel, it makes us lupus warriors feel less alone

Omg the part when you said your arm would go numb then shaking it to try and get rid of it is SPOT ON! I've had this many times especially when I'm sleeping I'd wake up in a panic and start shaking my arm to get rid of the numbness😓🙏🏼

I understand. Lupus is hard to diagnose and it affects us in many ways. When I was a kid I would get home from school and go to bed. I would sleep right through the entire night in my school uniform.

@28:32 "He doesn't understand daddy doesn't feel good when it looks like I feel fine" I know the exact feeling bro😭🙏🏼🙏

I've had SLE for 29 years now & a lot of the symptoms you described I've had them and still have most of them today, specifically that famous fatigue. Due to my Lupus I've received a kidney transplant, medication for life is very expensive. Brain fog, flare-up and phantom pains, problemswithspeaking or forgettingwhat you going to say, difficulty with pronunciation, dry mouth & much more are not easy for others to understand. I really despide when they say "but you don't look sick", "you're to young to be that sick", and more specifically when I park in handicap spaces. I hardly sleep well, on most occasions I could be up until 5 or 6 a.m. tossing and turning in bed while every one sleeps, I have been without sleep for more than 24 hours. There's so much more to say... May God bless you always & wishing you well from one lupie to another. Stay strong

So many of your symptoms are what I have experienced for many, many years. I had doctors dismissing my symptoms. So much on my Bloodwork was flagged and they still blew me off and gaslighted me. Finally, with my list of symptoms, bloodwork and even pictures of my rashes I finally have a doctor who wants me tested for lupus. Thank you for sharing this video. Those phantom pains is something that made me think “WHOA”! I know exactly what you mean! Most painful feeling I have ever felt. God bless and keep being your best advocate for your body.

Hi ! I’m so glad to have watched your story because I have a lot of what you do ! I’m 53 just diagnosed after years of trying ( my patience ) I usually watch the female lupus stories, but today I changed it up and here you are making me not feel so crazy even after diagnosis.i have lost many family members to this and pretty sure that all 3 of my kids have 32 / 19/18 ages . I will be starting methotrexate next week as I am allergic to Planquiel. Ty for your voice

Thanks brother. I was diagnosed with lupus in 2022 February. I'm a woman of 61 years of age living with lupus. Life is difficult with all the symptoms.

You just described my life of pain and the alcohol use to get moving. I am at that point where I can't tolerate high alcohol consumption anymore. Thanks mate, really helped me to know I'm not the only one. Most content out there is relative to women with lupus. Really good to hear a man's account of lupus, it is clearly different than the average women with lupus. Good luck brother.

Thank you for sharing 💜💜 this helped me a lot

You have explained sooooo well exactly how it is for me too! Thanks for posting this to let other people know how it is for us. I not only have Lupus, but I have many other conditions, illnesses, and other auto-immune diseases stacked on top. Life for me is horrible, especially dealing with all that I am in which i need to feel ok to do what i need to but I can't because of the flareup triggers. And people who don't understand what it's like tend to make assumptions (which cause anger and even more stress and depression) then I end up VERY ill for several days.

Thank you Ryan ❤

I’m so glad to happen upon your videos. This one was so enlighten because I have a lot of these symptoms. I inherited osteoarthritis from my mom ,my fingers are crooked and knots,pain. Have had 2 knee replacements due to that. About 7-8 years ago I was anemic every time I had bloodwork but couldn’t find out why. My hands got so bad I was getting disablity for my Dental assistant job. My primary sent me to Rheumatologist. After several test and visits I diagnosed with Lupus/RH and osteo arthritis. Some times I’m so tired don’t want to get out of bed or do anything. I used to be active and want to work outside. I’m not glad you have this fatigue but a lot of your symptoms I have and after seeing this realize it’s probably my Lupus. I don’t know anyone with Lupus to compare or talk to so you have been very informative. When I see Rheumatologist they ask me about flares I always say not sure no one ever explain all these things can be a flare. You just said you are allergic to Bactriam and I’m allergic to it too. My pain when I mention it they don’t know if it’s Osteoarthris or maybe Lupus. I’m just about to have Carpal tunnel surgery numbness in hand severe pain,so be aware you might get that. I’m going to watch your video on your medication know. Thanks for all your information it’s been very helpful to me. God Bless you