Welcome to my BRAND NEW RU-vid Channel called "Man with Lupus". In this Channel Intro video I, Ryan your host, am about to be diagnosed with Systemic Lupus Erythematosus (SLE). SLE is an incurable Autoimmune Disease that affects nearly every facet of your body and if left untreated, it can be fatal.
Come along on the journey with me as I begin the healing process from Lupus. As we move along I will begin to share stories about my symptoms as well as share my entire Lupus Story. I will address orbital health concerns as well as my battles with this Autoimmune Disease. I also plan to review my laboratory tests and their results, along with breakdowns of what those results mean. I will bring you along to my doctor visits, treatment sessions and even through my every day life as I continue to work my way through this debilitating invisible disease. All along the way taking suggestions from each of you as we walk this road together and shape this Channel into something amazing!
So this may be a dumb question. So far I was investigated for MS. But si far not enough typical lesions. It is 100% inflammation that comes in flares. Also evidence in the spinal fluid. Now the MS clinic is testing for Lupus. I can not see this being positive. But it may explain the breathing problem and hypoxia. Do some people have problems with walking, standing and arms quitting?
Hey. I have lupus also. Had lupus for a long time but didn't know it. How I found out was when I went to the emergency room due to one day my legs were getting a rash that got so bad that one of my legs had a giant hole. It looked like someone shot me in the leg. I still suffer today with fatigue, depression, anxiety, rashes that causes an urge to itch,. I cannot wear any tight fitting clothing. I would start itching severely. I try to stay fit and I work 2 jobs. It's a struggle but I push myself. i Did you know that there is a type 1 and type 2 Lupus?
I also experienced a lit of pain etc with covid and other viruses. The extreme emotional symptoms sound like herxheimer reaction from detox, which would make sense, bc your body will actually use a virus as an opportunity to detox. Another possibility is that you may have viruses etc. In the brain (that become m9re active when you are ill) like has been found in MS
Love this video! White female here diagnosed in 1985, dealing with all this for almost 40 years. Such a frustrating illness! Everything you said is true. I quit talking to people about it. 😢 keep pushing forward!!❤
i have lupus and RA and i relate to your story sooooo much. i got so bad one year i couldnt walk to the toilet or get out of bed, or bend down to tie my shoes, frozen hands, horible neck pain, migraines, photosensitivity, black spots in my vision, tinitus, all of it. i thought i was going to end up in a wheelchair within the 6 months, thats how bad i got. on top of it all the other stuff… night sweats, feaver, anxiety, depression, mouth sores, throat flares, not being ablw to lift my arm, EXTREME pain in my joints, thin hair that falls out, constant anemia, bruises all over, huge bloated stomach, TERRIBLE allergies as well, hypermobility, fatigue, bad teeth, and i do not get taken seriously because i look “normal”. its hell. ive had heat stroke, light heat and humidity sensitivity, constant migraines to the point of throwing up from how extremely painful they are…. its incredibly frustrating. neck and upper shoulder pain that is constant. trouble sleeping.
Sorry you’re going through this. I know from experience how this feels. However, changing eating habits, exercise and supplements for the gut/others have really helped reduce the pain. I guess at this point we all have to try whatever we can and see what works best for you. Low vitamin D usually comes from GI issues. God bless.
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.
Hey Ryan. The video was sad and inspiring at the same time. I hope you are doing well. I wanted to ask since you responded to my comment in your last video which was appreciated greatly. In that response you said that you had done the lion diet? How long did you do it for? I appreciate your responses. It makes me feel less alone 😢.
Thank you so much for this video! I feel so lost but trying to be positive. I was recently diagnosed with lupus and rheumatoid arthritis 3 months ago. I am trying to figure this out I am currently on plaquenil which is helping a lot but now my doc wants to also put me on methotrexate or benlysta and I’m just trying to research. I honestly don’t want to be on any meds and just go natural but I know deep down I need it. It’s good to hear other people’s perspective. Thank you!
I have not. My lupus has always been a non typical presentation and I have some other issues going on that they can’t figure out. So for me it’s a bit confusing on what is Lupus and what is attributed to these other conditions. My kidney function is on the lower side but still in range so that’s good. But I have SO much pain it’s unbearable. It’s like most of the joints in my body just get locked up and stiff and it’s so painful to move at all. That could certainly be attributed to Lupus. My dsDNA has always been very high and just remains there. I don’t feel any better and I never have. I’ve continuously gotten worse. Over the last few years I have cycles where for part of the year, typically the cold part, I’m in excruciating pain and my reynauds just kills me. It all hurts so bad. And in the summer months I still have an extreme amount of pain, however it’s not as bad as the winter. But in the warm months I throw up constantly. I wake up nauseated every day and eventually that turns into throwing up daily for months. Again, the throwing up is usually in the summer. Then I have constant low grade fevers, headaches, horrible memory issues. I don’t know what to make of any of it. And nothing seems to really help. Even when my labs look better I feel the same. Someone is missing something.
Sounds like you also have Sjögrens with your lupus as well, like me. I have cured myself over the last two years with Ivermectin and can finally function without chronic medication
Yeah I agree. The closer the person is to you the more it stings. I try toner they usually mean well, they just truly don’t get it. This is relentless and never ends and it’s so hard for someone who isn’t dealing with it to understand.
I gas a question. I watched your video of your story of your journey with lupus. I did the math of when you said from 10 to 12 years old symptoms started and your current age of 39. Since you have had lupus for 29 years have you constantly taken medication or tried avoiding it and eating s diet which causes less flare ups?
I did not find out it was lupus until 2 years ago. I was told there was nothing wrong with me and I was too young to have the symptoms I was complaining of. I was not taken even remotely seriously until my wife was able to start coming and saying that something is seriously wrong with me and this is not in my head. Since that time I have tried numerous diets and meds. I’m truly not feeling much, if any better however the one diet that seems to make a difference is the lion diet. But that is pretty controversial and doesn’t work for everyone.
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Hi Thank you. I'm looking forward to watching all your videos. Now 63 , RA X 30YR HASHIMOTO'S CUSHINGS Sjodren's and most recently? Drug induced Lupus!! Imo everyone needs to know that there are known drugs, for high blood pressure and others, that can trigger Lupus to become active. Dr's, nurses a d pharmacy need to know not to give patients with autoimmune issues Any of the over 80 drugs. PleSe make some needed videos on this . Thanks
Well presented. I was diagnosed with lupus SLEN 1994, 30 years ago. Somewhere in the journey they added lupus nephritis to my condition. In general I am living a very enjoyable fulfilled life. I do have a very severe joint deformity in my fingers however. I found certain foods are potentially the biggest trigger for the swelling and pain.
Thank you for all that info! I have been fortunate that I do not have much organ involved yet, however, I joints are in excruciating pain all day every day. What was the progression of your joint issues? When did it start? How painful was it? And how long until you started noticing deformities? I am starting to get knobs and horns on my joints in my fingers and they hurt so bad sometimes I can’t even type right or tie my shoes. And nothing seems to really away. Pain medication help take the edge off, but they are always in pain.
So with mine, they happen very briefly, when I touch cold things, not like an episode that last minutes or hours, so ive been curious if it actually isn’t raynauds, but the pics I’ve sent my providers, they have said look like it, even though it’s white only on the parts of my fingers that have touched the cold item, and not the distinct cut off you see in pics of others with it. Have you had it like that before?
So I do tend to get it more when it’s cold out. But I don’t need to touch anything. My fingers start to get cold, then I her neuropathy in them, then they start to turn white and I can’t really bend or control them. I have a distinct line where my finger or toes are white but the rest of my hand is colored and just fine. I definitely have Reynauds with mine.
@@manwithlupusI did recently have one night where the cooler was on too cold, and my fingers seemed to actually have a line of where the raynauds stops on my fingers, but I’m already so white, it’s hard to know for sure. I’m getting tested at a vascular clinic next week, so we will need what they think…
I experience this too with viruses and infections. But as a woman, I also experience this monthly. The hormonal aspect is very obvious but I also relate concerning picking up a bug or developing infection. Miserable.
Medical gaslighting…the struggle is REAL! I’ve been blown off my 99% of the doctors I’ve seen. I was even hospitalized a few months ago and they told me it was a somatic issue. I had a mini stroke. That’s why I was there. It’s nice to have proof and validation.
I’ve been seeing doctors for over 20 years. I have a laundry list of severe chronic illnesses, lupus SLE being the newest on the list. I also have 3 grown kids. Two have had chronic pain and health problems since middle school. My fight hasn’t been just for me, but for THEM. Thank you for sharing your story. So much of your experiences are way too relatable!
You’re very welcome! I have a 20yo and a 7yo and I’m so worried that they will have this. My older child seems to being doing fine. We will find out on the little guy.
Hey Ryan, I wanted to thank you for making this channel. I have not been diagnosed with lupus, but I am pretty sure I have it. I have been dealing with flare-ups for the last six years. I have seen five rheumatologists, and they tell me I don’t have an autoimmune disease. When I try to describe my symptoms, they sound made up. I get random pains in my toes, fingers, wrists, etc., and it’s just random. I feel tired, depressed, and I have a rash on both sides of my nose near my cheeks. But I guess my blood work doesn’t indicate that I have lupus. I have four relatives on my mother’s side who have been diagnosed with lupus. After watching this video, I felt that it described 90% of my symptoms. So I wanted to thank you. I know that I am not just making up these symptoms in my head. LOL.
Ugh that’s so hard. I went through years of that myself where nobody would believe me and it was torturous on my mental health. I thought I was crazy and losing my mind and making it all up. Have you done blood testing? Did you have a positive ANA? That’s the first step. But it does sound like you have some of the symptoms.
@@manwithlupus Yeah, it always comes out <1:80. I have seen five rheumatologists, and they don't believe I have an autoimmune disease. However, my CK levels are always high. The last couple of times I had flare-ups, my WBC was high, but I wasn't sick (fever, cold, flu). I am scheduled to do a muscle biopsy due to symptoms, elevated CK levels and inflammation in my nerve test (EMG). I just requested a referral to a rheumatologist who specializes in lupus. The symptoms you described, along with my four aunts who have been diagnosed with lupus, kind of point to it. Just knowing I might find a diagnosis is relieving.
I had instersoal nephritis and lupus nephritis 😢I was going to get the electronic device that goes in your back to tell you when to pee thank God I didn't have to have it im a lupus warrior and you are too❤
Dang! Which device is that? I haven’t heard of it. I’m fortunate that my kidneys do not show much sign of involvement. I think my Lupus is attacking my joint tissues more than anything else. So I’m not at risk of kidney failure (for now) but my pain is just excruciating. Glad you didn’t have to go through all that fellow warrior!!
Thank you for sharing your story and to other people too. It can really help to know what other people are experiencing and you're not just being a "sook". My own term for myself before I was also diagnosed with Lupus.
You are so welcome! I honestly found so much relief in being diagnosed. It was hard for me to accept that something was wrong with me until I was able to get a diagnosis and it drove me crazy for years. Feeling like maybe I was making it all up in my head. I’m still in the same boat with bone and bone marrow condition so that’s been hard trying to figure that one out now too.
I’ve been trying to find random lupus stories to feature on the channel as inspiration. Mikes story was a good one! If you have a good story and want to be featured just let me know!
Eating a very strict healthy diet loaded with fruits and vegetables and exercise is the main key to managing this disease. Avoid red meat and garlic. Also, avoid stressing as much as you can. Ive come to realize with lupus, you are literally what you eat.
All of my Mediterranean type diets didn’t make me feel any different. The only diet that has helped me is carnivore. I think diets are as specific to the individual as anything else with this disease. Sure is a tough one to figure out. I’ve never fully gone into remission, I’ve had an active case of Lupus for years. It’s wild.
@@manwithlupus that's so weird, when I eat red meats I feel sick, so basically its the opposite for me. I have to constantly eat fruits and vegetables or else Ill feel like crap. Lupus is a very strange disease, I had so many weird symptoms before diagnosis. My chest would hurt when I sneezed for about a year, turns out I had fluid around my heart ☹️
It sure is a strange disease. I randomly suffer from severe chest pain and it comes with a headache. And bending down or even laying down makes my head feel like it’s going to explode. It’s a horrible feeling! Sounds different from yours but still, this condition is brutal.
You are so welcome! It truly is a brutal disease to suffer with. I can’t seem to figure out anything that makes me feel any better. It’s been years of the same roller coaster ride and I’m so exhausted. I appreciate you watching and commenting!!
I really hope that one day there will be a cure for lupus. Once you have one autoimmune disease, you tend to have another one or two. SLE patient here for 17 yrs. Last year I got sick, went to the ER and was put in the ICU right away because I was already in a very severe condition. My immune system went ballistic and torpedoed my thyroid and platelets so I end up having thyrotoxic, PPP, ITP, and severe sepsis. My platelets were so low that I was already having internal hemorrhage. I spent only 9 days in the hospital and that’s the best part 😁😁😁 and yes those Potassium IV’s buurrrrrrrns!!!😱😱😱
Dang! I am fortunate that I haven’t had any life threatening issues up to this point. My kidney function has only been slightly low a couple times. I do have a suspicion that I have neuropsychiatric symptoms but I can’t get anyone to take me seriously.
Absolutely. A normal cold or sinus infection makes lupus flare out of control and the body pain cranks up to 1000. It’s horrible. And yes, the deep depression comes in as well. It’s absolutely terrible. I’m actually noticing that about 4 days into the flare depression comes. I have neuropsychiatric lupus with what looks like dementia. I can’t think straight, I can’t speak well because I forget words (including simple, everyday objects like shoes, fridge, etc.) and my memory goes to sh*t.
Oh you’re just the person I need to talk to! Npsle is something I’m worried about. I have horrible memory issues and I can’t get words out. They’re in my mind but I can’t get them to come out of my mouth. I have been having horrible issues with that. Sitting in a daze just like my brain will not work. I have a suspicion of neuro involvement with my lupus but nobody will seem to address it. How do they diagnose npsle? What symptoms do you have that are specific to it? How could I tell if my suspicions are correct?
The music was too much. It’s too loud and the first half was too dramatic. I’d remove the music altogether or lower it to just noticeable in the background. It was distracting
Hi Ryan. Not sure if you remember me. I hope you are DOING ok. It's been well over a year now 🤔😱 AND I'm still waiting to even see anyone 😢. Thid is interesting, for me anyway. I tested positive for CTD😮. PLUS LUPUS 😞🥺. I have consistent high CRP, since 2015🧐😩😏. And ESR, when my GP, can be bothered to do the latter..... My symptoms are much WORSE. So tired😴🥱 Have recently been told i have SH, I did some checking and there is a connect Wonder if anyone else has this Thanks for this. Keep on fighting. Stay strong.🙏
Good to hear from you again! Sucks that you’re you’re struggling still. I’m not feeling much better either. It’s like they keep telling me that my labs look good and then just push me off to the next appt. But the only things keeping me going are pain medication and that’s a horrible way to have to live. I just wish someone would give me something that helped. I’m so exhausted and so drained of resources. I just was at a geneticist trying to figure out my bone and bone marrow issue but no real luck there either. My disability claim was denied and we are now appealing. I’m so tired of feeling like I worked my whole life, employed hundreds of people, provided health insurance and retirement for all my employees. I served so many people and now when I’m down and sick nobody can or will help. I’ve have one old friend who has stood by me and helped and offered me some work that I can actually handle. But everyone else has mostly just moved on from me and that’s hard also. My whole life is affected, my marriage is struggling from all of this. My finances are drained. I can’t work more than a few hours a day max and even at that it’s hard and I get sick often. I feel very stuck and it is hard.
Ryan, WOW 😲 I don't know what to SAY 😮. Except I'm so very sorry for your situation. I'll check out your email you gave me. I am disgusted, that you were turned down for Beep Beep, ( what you're entitled to). Especially as you have clearly worked so hard. YES, it's sucks when you get TOLD your lab's are good/pretty good 😱🥵🤬..... Makes you feel, like you are back to square one 😮... I thought you might not be doing good. AS know post's for awhile. Sorry I didn't message to see how you were doing. I'm totally ALONE 😢 now 🤔 too. So I can relate. Sad 😭 😭 the whole world, seems to have become so dam selfish. I will send you a test email. It's 3.30a.m. her Wednesday 5th June. You take care, I actually mean IT 🙏 💯 J
@@manwithlupus sorry Ryan. I can't find your email address. I thought FROM memory, it was ryanmanwithlupus, not sure who you are with I'm with Gmail. Anyway, would love to be able to email you. If your still ok with that. I went back to some of your old posts, couldn't find the one I got... . I saw something about food etc. I haven't been able to eat for nearly a year now,😞😮😧. Was mainly all vege and fruit bit of chicken eggs. Now I have a banana and piece of bread Again waiting for the hospital, for this, with aortic dysphagia and server oral phas dysphagia . Hope you slept well. J
I had to stop working. To this day they are the most painful part of this whole thing. My hands ache and my fingers feel like they’re jammed. They’re excruciating. Some days I can’t tie my shoes or dress myself. Steering wheels are extremely painful to maneuver. It’s brutal. Pain medication helps but isn’t a total fix or cure.
Hi the doctor told me that I have lupus i did all the taste they are negative still the doctor said I have it my joints are so painful swelling I can't hold anything i losed my hair rush's my face am taking my medicine but no change help me
What did they use to justify the diagnosis? There should be a positive ANA result if you have Lupus. I’m not sure how they’d exclusively diagnose Lupus without that so I’m curious.
Have you had a sleep study? Some of your sleep symptoms (feeling like you ran a marathon, insomnia, increased BP) are symptoms of sleep apnea. It's not rare to have sleep apnea without snoring/being overweight. Wish you well
I'm a man with Lupus. I can relate to alot of what you say. Here in South Dakota, there are no support groups so I feel alone. I don't bother talking to well meaning people anymore. They just don't get it. I just keep it inside. I don't want to make my problem anyone else's. The Lupus has changed me so much over the past year. Some good,mostly bad. I've tried 3 jobs over the last year. I've had to leave them all. My wife is an angel, but watching her try to keep things together has been very hard. My biggest frustration is that there is no support for men.
I’m sorry to hear that you’re struggling. It really is a horribly difficult condition to have. I’m in the same boat. I can’t hold down anything more than 2-3 hours/day and not every day. Some days I can’t work at all. I’ve been waiting on a disability claim and just recently they denied my case so we have appealed. But it’s so horrible because what can I do? I can’t work, but I need to pay bills, I’m completely just at the mercy of life and I hate that feeling. I hope things get better for you and that you find some good in all the mess.
@@manwithlupus Thanks for the moral support. I appreciate your open, unreserved honesty. My journey with the disability application starts in a few days. I'm sure I'll be going through the same thing you are. I hope you get it sooner rather than later. It took my wife's mom five years. She has fibromyagia. Before I had Lupus I would always wonder why she just can't do (pool or light exercise) this or that? Now I know why. My wife now has the same job her father has. She needs to be a selfless caregiver. Like you, I do everything I can to help out, but it's often not enough. As a man this is hard. I use to be the rock. Right now I'm doing everything I can to avoid having to take any of the meds. I have taken hydroxychloroquine, but recently stopped. I haven't tried every alternative approach yet, but as you mentioned in a previous video, it's hard to when you're tight on money. My wife and I are frugal. We signed up for the Dave Ramsey program just after I was diagnosed. It's prepared us in a way. The pain in my hands and feet are newer symptoms. The headaches are the worst right now. You desrbed them perfectly in the video. My ultimate hope is that there is a cure someday for all of us men and women that suffer with this malady. Take care, Sam
1st of all I’m 44 I got on hydroquooquin sulfate it really helps I didn’t think I could feel like like I was 20 again you know I’ve watched your video a few times today it is a heavy weight to live with all the viewers need to know is that this is real I’ve hated myself for being in pain and I can’t do anything about it. I’m a disabled vet and was hit with an IED and thought that was the issue for years but it wasn’t it effects every organ even your brain it sucks. I never did anything wrong and we are punished for it all of us with lupus I’m sorry but it makes me sad I always hurt and there is no way to fix it
Well thank you for your service brother! I am grateful to you. And you’re so right, I’ve beat myself up my whole life about not being able to keep up with everyone. I never knew why. I thought I was just less than. I always wanted to go serve our country but I knew physically I couldn’t do it. That ate me up for years that I wasn’t “man enough” to go serve our country. So I’m very grateful to people like you. For me, I’m fighting a disability case which isn’t going very well for me. Yet I can’t hold down work because I cannot keep anything like a regular schedule. I may be sick for 2 weeks straight and then have a couple good days and then sick again for another week. Yet they denied my disability. My hands hurt so bad I can hardly use them, even typing or using the keyboard is painful. It’s like I feel so stuck with no help or assistance or path forward. I feel very “stuck”.
