My Lupus Story | Systemic Lupus Erythematosus
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- เผยแพร่เมื่อ 30 ก.ย. 2024
- Welcome to another installment from 'Man with Lupus', in today's video I share my Lupus story. The struggle to get diagnosed, especially with Systemic Lupus Erythematosus is not easy. The symptoms are complicated, the diagnostic tools are lacking and so much of it is left open to interpretation.
After being sick for decades I am glad to finally have a diagnosis in sight, however I'm not sure what my future holds or what it would even feel like to be me again. Regardless, here is My Lupus Story.
#ManWithLupus #MyLupusStory #LupusWarrior
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Many of the symptoms you explained I have. After being diagnosed was it possible for you to apply for ssi or ssdi?
Yes. Thank you for your help 👍
Oh my Lord save us sorry this disease is so painful 😣😣😣😣😣
My DNA test are negative but only my joints are painful rashes only that what I have is that lupus
Thank you for this. I have most of these symptoms. I have positive ANA, photosensitivity, positive Anti Ro. I was given the diagnosis of Sjogren's. Rashes, joint pain, pots/dysautonomia.I have a lot of symptoms that are more lupus.
The dry mouth, blurry eyes, is very much a Sjogren's syndrome.
I will be 73 in Feb. I just found out I have lupus.i have a rash on my back, and I bleed through my clothes. They thought I had Copd. The lab showed I have lupus,
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.❤
Your weight gain/loss is what resonated most with me in this comment. I can gain/lose as much as 10-11lbs in a day and as much as 19lbs in a weekend. I also lose extreme amount of flexibility. I have always stretched and done my best to stay limber and it’s so frustrating and painful. My hands and feet are my most painful areas followed closely by my shoulders and hips. Thank you for sharing!!
Do the research on DIET FOR LUPUS. Amazing results!
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!
I wish I had known so much sooner but I’m glad I know now. And now I have another condition which we simply cannot figure out what it is. I’ve been referred to the undiagnosed disease center. Not sure what’s going to happen.
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.
You’re very welcome! And thanks for sharing here. I spent so much time in different lupus groups and forums just horribly confused. It was like everyone and everything contradicted each other and so I finally said I’m just gonna make my own community and that way I can do my best to sort through the info! I’m still waiting to get any relief but I hope some is soon to come. 6 months of hydroxychloroquine with no change in my labs and now they’re trying to get approval for Benlysta. Hope that works. I’m struggling to work and can’t afford much now.
Sounds like we have similar experiences. I didn’t get believed at all as a kid. Just basically ignored. Then when I got older and started going to the doctors and saying I don’t feel OK I was just met with “you’re a young guy, you’re fine”. That professed for about 8 years and the last 2-3 I’ve been going downhill fast with tons of symptoms and it still took til this last year for them to actually test me and figure it out. And they’re like “oh wow, you do have something going on”. Lol
Anyway, glad you’re here and enjoyed the video! Good luck on your journey and stick around the community here, you’ve got a lot of good experience that can help a lot of people!
My story exactly like yours
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 hate that feeling so much, it drives me insane!!
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 for watching! Lupus has been horribly difficult to deal with. I’m sorry to hear about your cousin’ struggles. Luckily I’ve never had to go into the hospital (yet) however I’ve been close on one occasion. Im hoping someone can find a solid solution in the near future. It’s amazing how advanced technology is. Yet we can’t get a cure, or heck, even an effective treatment!
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
Ugh. That sure is tough. I’m trying to get on disability because I just simply cannot hold down a schedule. I may be sick for 3 weeks straight and completely useless at work. Or I may be able to show up all week. Then the next week I’m down. It’s just so unpredictable and when it hits me, I’m just completely DONE! Hand in there. I’m glad you’re here. We need a solid group of warriors around here!!
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
I’m so sorry it’s all been so hard for you. I have all those small symptoms too. I wish some of the medications would work. I’ve been taking them for like 2 years and I do not feel any better at all. I had to file for disability because I simply can no longer hold down a job. I’m sick constantly and the fatigue and brain fog plus my hands that hurt SO much, how can I support myself. It’s just unfair and ridiculous
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’m struggling with doing that. I’m also struggling with being easy on myself. I’m so hard on myself and have such high expectations of myself. I’m getting a little better but it sure is hard. Hardest thing I’ve had to go through in my life b
If you don’t mind can you tell me how you felt with it, are the symptoms less severe. It’s just that I’m also suffering from this condition.
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.
Oh, you are telling my story! I am so hard on myself. I really struggle with my physical fitness. I do jiujitsu and as you can imagine Lupus puts a major wrench in that plan. My Sensei has essentially had to create a way for me to drill and learn the moves with no pressure or added force for me. Kind of like a disability version of it. And I am so hard on myself about it. I feel like a pathetic loser. And I get what you’re saying about not even being able to shower. I can’t even tie my shoes sometimes. The only thing that keeps me physically active at all are pain medications and continuing to stretch and do my best to not let my body freeze up. And I am always exhausted, which is then a spiral. And stress. Stress is killing me, literally. I’m 40 and have a wife and kids and I cannot work. I have only been able to work maybe 8 hours/week or so and even that is seemingly too much. I do not know how the rest of my life is going to go. I’m terrified. I have been fighting a disability case for almost a year now. If you haven’t started that process I would. And hire an attorney, they are no out of pocket cost to you. That only get paid if you win and they take like 1/3. But it’s a long process and you can still work part time during the process. I recommend doing it as soon as possible. I just had my doctor review and I do not feel it went well. I barely had any time with him. Was not really asked hardly any questions. Then I was made to go through a mobility exam and I just feel like there’s no way that guy could determine if I’m disabled in 15 minutes and with what he did. I’m so anxious that I will get denied which is almost a certainty and then we have to appeal. The attorneys will do all of that though. Anyway, good luck and hope you subscribed. I’m hoping to get some new content out soon. I’ve been really sick and searching for a diagnosis on another condition I have and it’s not going well.
Something similar for me too
I have SLE getting a diagnosis knowing It's not me, helped me alot
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.
Jeez! I always struggled horribly waking up. Just so drained and fatigued. To the point where as an adult I formed my whole life so that I could work second or third shift. I just cannot wake up and work, it’s dangerous. I’m so fatigued I’m not thinking right nor am I safe or able to be on point. It sucked! And I was always called lazy.
I have lupus was diagnose in 2019 some days all i want to do is lay in my bed all day
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
You’re welcome. Thank you for watching and being here! I hope to be putting out some new content soon. I’ve been very sick and dealing with another condition on top of this and I’ve just been down for the count for about 4-5 months. I’m so exhausted. But I’ll be back asap!!
@28:32 "He doesn't understand daddy doesn't feel good when it looks like I feel fine"
I know the exact feeling bro😭🙏🏼🙏🏼🙏🏼
That’s the hardest part. Telling him I can’t pick him up right now or carry him. It makes me feel so guilty.
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.
It sure is. Thanks for being here!!
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.
So glad you’re here. Please consider subscribing if you haven’t already. I found the same thing, mens groups are huge for other men. Women are great, but it’s hard for them to wrap their head around “if I can’t fix things or provide or whatever…” than I don’t want nor deserve a life. It’s like, without being able to be a good able bodied man I feel embarrassed and ashamed.
I see it has already been mentioned but you might want to get tested for Sjogrens. I have Lupus and Sjogrens and I have all the symptoms you are describing.
Yeah I will be bringing that up at my next appt.
All these symptoms are familiar to me 💜 apart from the migrans .. all of them !! 💜
thank you so much for taking the time to share all your specific symptoms. I've had lupus for about a year now. I recently started to develop multiple random symptoms and your experience reaffirms me that it is not all in my mind.
That’s one of my biggest struggles. Wondering if this is just in my head or not. The diagnosis was so important for me so I could believe myself. Well I hope things get better for you man. Don’t be a stranger and keep us posted!
Hi there, I have SLE just like yourself and on at several medications and pills. I have had all organ involvement but more severely kidneys, heart, lungs and brain. I did chemotherapy for four years which I was told I would only need 12 months. I now have heart failure and my kidneys are totally damaged and I’m living on a life support machine( Dialysis ) this is now my second transplant and been waiting 10 years for the second kidney. The first transplant only lasted 5 years unfortunately. I was diagnosed at 19 years and now in my late 40’s I’ve been working most my life and play tennis 3-4 days a week. But I recently retired from work cause I’m in and out of hospital too much I just feel it’s getting harder as I get older.
My journey has been long and difficult but stay strong and motivated that one day I get one more chance at life and get another kidney.
Thank you for your story cause I could relate to all your symptoms, I hope everything turns out well for you. Stay strong.
Ugh that sounds like a tough struggle story. Thank you so much for sharing it. I’m only 40yo and I’m barely scraping by at this point. My career path has been compelled destroyed. My ability to work without getting sicker is maxed out around a couple hours per day. I sure do feel stuck.
@@manwithlupusI wish you well,it’s a tough road with lots of ups and downs. And look forward to seeing more content from you.
Hope to get feeling better and get back to making videos. It’s the editing that’s difficult
🙏🏾🌹💪🏾
I am healing for systemic lupus
Is multi fact peace, less stress, gut, healing from inside out..
Thank you so much this has been so insightful, I've had so many issues for so long and alot similar to yours, you described the headaches and pains well. I've had doctors call it anxiety and tell me it's all in my head. I've finally got some scans on Thursday I'm hoping this will lead towards some answers. My mother has lupus and I think I have also had lupus since being a young child although didn't realise what it was until my mum was diagnosed a few years back I started doing some research and it just clicked that i have alot of the symptoms. I told my doctor a couple of years back that my mum has it and I thought I had it too and he didn't seem like he believed me, told me it was just anxiety he run an ANA test in the end and it had come back negative and then told me case dismissed. I believe half the battle is getting a doctor to believe you, alot of the doctors I have spoken to just want to dismiss it all as anxiety and depression. Do they not realise it's possible to be depressed and also have an autoimmune condition? Or that there's a chronic issue causing the depression? It's extremely frustrating.
Yep I agree. I feel like my doctors still continue to try to disprove it. I don’t feel the doctors know very much about this stuff. They won’t admit it but that sure is how it feels.
My daughter has lupus for 10yrs now She struggles some days and some days she's ok but not a nice illness Strongs to you as well
It sure can be tough. I just want to be stable and my whole life feels like a constant roller coaster. Woke up today puking and dizzy and confused. It’s just like man, can’t I catch a break and rest and reset… ever?!
Excellent video thank you so much, I have been going through a lot of the same symptoms that you mention. Chronic pain, headches, sweating usally a cold sweat. tingling in hands and feet cold feet and hands. nausea. Very tired even when I wake up. My lymph nodes swelling. throughout the body. Elevated WBC I went to doctor and have more tests coming up but they are thinking maybe Luakemia or lupus. Been dealing with for years. My aunt has lupus so maybe hereditary? Thanks again this video helps me understand.more and sounds like very possible I may have lupus.
Yes they were thinking leukemia or some kind of blood condition or cancer. I spent a year at oncology and they couldn’t find any signs of cancers. I’d almost rather have something so at least I know what’s going on. This whole “we don’t know what to tell you” is really disheartening.
@@manwithlupus I totally understand that we don't know what tell you thing. I have been dealing with this since before 2016. Done multible tests. never getting answers. Hope to some day but for now more tests untill they figure it out. Sorry that you're going through the same thing.
Lupus, fibromyalgia, protracted benzodiazepine withdrawal symptoms, All have very similar side effects which one could it be ?
I also have Lupus.. Thanks for sharing your story.. I wishanu other would also 💜
I have Lupus. MsD
I got mis diagnosed with Mono on February 20th. I have body pain like no other, fatigue, chills, lack of appetite, trouble falling asleep and trouble staying asleep. I have also suffered from severe NoduloCystic acne and I thought it was just acne. I also have suffered from weird rashes caused by god knows what. I still am waiting for a diagnosis. My grandma had lupus. I told my doctor she had lupus so she added it as a test for my next round of blood tests. I am confident I have Lupus. This video has helped me gain knowledge about this autoimmune disease and reminds me these symptoms are tied to whatever I may have.
Dang you’ve had a hard time. I had a real rough weekend. Last week was a relatively good week for me and then Saturday hit and it was all over. Now I’m still recovering from the fatigue and horrible chest pain. It was horrible. All that said, if you’re not comfortable talking here could you email me about that acne? I have had this issue across my back and shoulders my whole life and they are huge cystic acne that is so painful I can’t even lean back in chairs. It bleeds through my clothes and can have as much as 5ml or more of fluid in each one. NOBODY has any clue what it is. It went away for about 5 years and I just recently had another flare up. It literally leaves scars across my back and nothing stops or helps them. Once they flare up I just have no say in the matter and they’re gonna run their course. I’ve seen dermatologists my whole life. Had them all individually injected with cortisone. I mean crazy stuff and nothing helps. I don’t even know what they are… but maybe you do?!
Ryan. Thank you sooooo much for sharing your story. I'm still searching for a "proper diagnosis". Going on one year. Many doctors, specialists, and tests later...No one knows what I have. Or the underlying cause. What's terrifying? My rapid weight loss & muscle wasting. Going from a healthy, energetic, and confident person...To a shell of who I once was. It's EXTREMELY frustrating 😤 Your video reminds us; We're never alone in our struggles. Godbless you and your family 🙏
Oh man I’m sorry you’re going through that. I have lupus but I have another condition they cannot figure out. It involves my bone marrow and bones calcifying, but that has not been taken into consideration by Social Security. I’m trying to get disability because I simply cannot work enough, I get very sick. It’s such a hard life brother.
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 have and I do have apnea. But I wear their mask thing. I haven’t noticed any change.
I have lupus, Psoriatic Arthritis, and secondary Sjogrens. I have many of the same symptoms. My rheumatologist says auto immune diseases like friends so you possibly have more than one. The Sjogrens causes dry mouth, dry eyes, dry nose… sun makes me sick too and certain lights make me feel weird and dizzy (like in Walmart) I suspect I have costochondritis which can accompany lupus (it causes pain in sternum and upper rib cage and it’s hard to take deep breath) also cannot take bactrim made me have a huge flare.. I so understand and it is hard for people to understand.. fatigue is horrible I feel exhausted all the time especially during a flare.. I take Plaquenil but I am resist taking other meds that jack your immune system up even more scares me so bad because I had excruciating flares last spring.. I feel they were triggered by new meds … weather, stress, illness, sun are big triggers for me
Yeah I have reynauds and fibro as well. And then I have an issue with my bones and bone marrow that they dont think is related but nobody can give me any answers. It's getting exhausting. Hope to see you around the channel more!
I am a woman and many of the symptoms you listed resonate with me but not as severe (some yes, most are not as severe or are a bit different).
Due to blood clotting issues, I have had full blood panel testing done 2x (literally 21 vials of blood) about 15 years apart. Both test showed the Lupus Anticoagulant marker. Working together, an immunologist, hematologist and Rheumatologist diagnosed me with Lupus. (Other issues we were trying to get to the. Bottom of).
However, for years I was fairly (what felt like) asymptomatic, which I attribute to living a stress free FUN life doing what I love, being young and eating amazing farm to table all organic food. This coupled with being happy, getting ten hours of sleep and the sheer amount of snowboarding I did…. What else could it have been kept me asymptomatic? I had no insurance so I couldn’t take the prescribed meds or afford to follow up so that was that. 🤷🏻♀️ what 23 year old thinks they should really care???
Que 15 years later… i have many symptoms you list and other ones too… I work in a pressure cooker, my diet is semi healthy (actually not really just semi healthy compared to the rest of the population and not grown organically farm to table), I am living on 5hr energy and coffee..instead of healthy foods.. my activity is down due to working 70 hours per week. I am on Setraline, Alprazolam, Adderall… because work
and with a recent diagnosis of Chronic Pancreatitis (due to years of acute pancreatitis attack in late 2020 / early 2021 I was hospitalized for two weeks 3 times within a couple of months) along with other symptoms, I was sick super duper just sick… my body was breaking down. I mean it still is but without stress I am a bit better…
The Pancreatitis attacks I mentioned, that for two decades doctors would write off as anxiety, GERD, H pylori , haitial hernia, gastritis, anxiety, gastrointestinal weakness (?), oh and did I mention anxiety?
This last massive Acute Pancreatitis I had to look inward and get to the bottom of why is happening inside my body…
I brought up my Lupus diagnosis from 2008 and asked if the pancreas ish could be related to my lupus. I was told by my pancreatic specialist who is a GI but who consulted with colleagues (not with a rheumatologist/hematologist) that reviewed my current charts but could not get my former records due to the time frame and the former hospital not having them… I was told I don’t have lupus. My PCP will not give the referral to the Rheumatologist as the GI is adamant I do not have Lupus.
Here I am a couple years later I have something wrong with me but cannot get anyone to listen.
(I should mention the pancreatitis attacks were happening since childhood - I know for a fact and we’re not alcohol related either - I want to throw that out there).
I went on a tangent… I didn’t mean to tell my life story. ADHD.
I have a question and I want to see if you have had physician reactions to vaccines. Not Covid. It ALL of them? I ask because growing up I would get extremely ill from boosters, and in nursing school Hep B - I couldn’t drive home and then was sick for days after each in the series. Covid vax didn’t make me sick but maybe a chemical is missing. How do you respond to the vaccines? (Not a discussion for anti or pro vax!!! I have nuanced feelings).
You had mentioned the pain in the sternum… is the bones are u see it? Pancreatitis for many people is extremely painful under the sternum it feels like a Rough textured bubble is sitting inside your rib cage. Maybe test your lipase/amalyse.
Hey! I’m glad you shared. So many of us have long struggles like that. I know diagnosis of lupus can be a struggle. And sometimes it may not be Lupus. I would try to ask my doctor for the AVISE CTD blood test/panel. This is not a standard blood test looking at markers. It is a diagnostic tool which looks at your blood and based on a series of qualifying indicators will actually diagnose you. This is the first test that I’m aware of which is diagnostic. I recently had a doctor give me a second opinion and she said “I’m not sure you have lupus” because I did not have a butterfly rash, I had no lupus specific markers in my blood and I only presented a swath of symptoms. She even said that she was not sure regardless if the AVISE test said I was positive. Well fast forward a few months and I had a really bad flare up and my c3 and c4 complements tanked. These are very specific lupus markers. Point of the store? The AVISE CTD test was right in the face of multiple doctors being unsure. So I would look into that testing. I did have to pay a chunk out of pocket for the test which sucks, I believe I paid over $1000. But it was what got me diagnosed and treated.
As far as vaccines go, I have never had a bad reaction to one. One thing I did learn was that taking the antibiotic Bactrim will immediately send me into a fever and shaking and bloodshot eyes, etc. I learned that many lupus patients are very allergic to that medication. Not sure if you’ve ever had that medication or that experience, but that’s one other indicator for you to look at.
These are called diseases of the age. My greetings to the lupus fighters. I am a psoriasis fighter and I hope one day that the immune system will realize that it is attacking its friend, not its enemy.❤
Thank you for your courage to do this. It makes those of us who suffer from this less alone.
Thank you for this video! My dad has lupus and recently the Dr thinks I may too. I get my tests results in a few weeks. I’ve been in chronic pain for 12 years and lupus explains why even after back surgery it’s never stopped hurting.
Ugh well good luck! I sure hope you fail that test!!! But if you do have Lupus there’s a lot of support. It’s a long slow road but there is support.
Thank you so much for making this video.
Thank you for the video it’s really help me understand. I’ve been dealing with this pretty much all my life and then about 20 years ago. The doctor said I had systematic lupus. I took meds and everything kind of went away and I ended up getting a divorce lost my insurance And really didn’t pay attention to it anymore because it wasn’t really bad. I just dealt with it but now I’m 50 the last seven months is been murder for me. Everything you describe is what’s going on with me getting out of the bed the pain is unbearable people think that I’m crazy when I tell them, I’m right now seeing another rheumatologist but I’m on the waiting list that’s how bad it is here in Florida but literally I think that I’m dying but the video really really help me and I tell my family if they only knew themes to me or not normal like sneezing if I sneeze Two days later feels like somebody kicked me in the chest 100 times but everything you said is pretty much what I go through every day. I don’t wanna make this too long. It’s already been long but thanks again my name is Wayne and I really really appreciate your video. Thank you so much I hope this helps everyone else to. Thanks.
Glad you’re here Wayne! It sure is a wild condition. I often say if a random person woke up feeling how I feel in the morning I guarantee you they would call the ambulance or head straight to the ER. It’s excruciating and unbearable and nobody seems to really believe it. It’s like every time I talk about it people just can’t fathom it. And then to just have this non stop and progressively getting worse with no reprieve is just horrible. I mean the best I get is a day or two in a row where my pain medication numbs the pain enough for me to be active at all AND I don’t have a fever AND I don’t throw up AND I’m not too confused to accomplish things. That’s a lot of variables that never seem to line up and it feels as though I rarely get a single day or two where I don’t feel completely miserable and wanting to check out of life. It’s not fair and as I get older I’m getting more afraid of what’s to come. I have very little hope anything is ever going to get better. Everyone says it will but for 20 years it’s just gotten worse and worse and worse. So I feel you brother! I’m here for you. I’m glad you found the channel. I hope to get another video out very soon!
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.
Thank you! I don’t get too many people who relate to my “phantom pains”. My wife Katy laughs that I call them phantom pains haha. She’s like what in the world is that?? But it’s just like I’m looking at my arm, nothing is wrong and it feels like someone is sticking a screwdriver through my flesh down to my bone. It last 10 seconds or so and then it’s done. I also have fibromyalgia and I’ve often wondered if that pain is more neurological or fibro related. Either way, they hurt!!
All these symptoms are familiar to me 💜 apart from the migrans .. all of them !! 💜
If you’ve got dry mouth, you probably have Sjogren’s, too. Get tested. Sjogren’s and lupus are very similar.
I will have to check into that. I feel like we did look into that but I could be wrong. What other symptoms are there?
im only able to work a few hours to much for me now just getting out of bed is horrible i nearly lost my kidneys i can not sit outside even in the garden at all not nice
Thanks for sharing.
I have extreme swelling that comes on in a day. From thin to looking like i am 7mths pregnant also Whole body swelling. Doctors don't know why i swell so fast. Organs were checked.
Can last 6 weeks to a year then suddenly disappear within 2 to 4 days. Ontop of all the horrific lupus issues, many i experienced just as you..swelling is just another extra thing. I believe there is some connection due to the fact when swelling leaves my lupus symptoms improve. Just want to know why and no one can explain why. Frustrating.
I was extremely high energy and a workaholic. I never stopped!
I have now stopped due to lupus. I also believe we grieve the old version of ourselves before lupus takes over. It makes you feel like you are dying a slow painful death.
I totally get it. I too was a 24/7 go go go, work hard, earned a lot of money, never stopped. And now I’m barely able to get out of bed many days. I’m sitting here with horrible chest pain about to go to the ER if it gets worse. I have so many strange symptoms that I just don’t even know what say or do anymore. They didn’t want to treat me with benlysta because apparently my labs looked better. But by better it’s like a couple numbers leveled off. I don’t feel any better, I feel worse. It’s exhausting. Interesting note, I’ve had Covid twice and each time I’ve had it, once it went away, I felt like a million bucks for a couple weeks before it all crept back in.
@@manwithlupus
Sorry you are going throug this, I understand how hard it can be.
I pray you feel better soon.
I always blamed my klienfelders syndrome xxy 47.so glad my endocrinologist pushed forward with blood work and found lupus sle,RA,REYNARD, secondary polycythemia. What your describing is me as well. I was a wildland firefighter and the job became unbearable. Im 59 yrs old now. I am getting ready for my 3rd heart Stent in the past 5 years. Not overweight non smoker lupus affected my heart arteries clogging up frequently despite years of hydroxychloroquine. Tgod my wife is my caretaker now. Thanks for posting this video. Im surviving because of my disability from my time in the military.
You’re welcome! And damn; I’ve got a handful of wildland firefighter friends and I even knew 3 of the Yarnell 19. Thank you for that service, that’s a scary intense job. My reynauds has been killing me. I’ve been very sick for about 4-5 months and haven’t even been able to put out new content. I’m really struggling right now as I have an undiagnosed condition that nobody can figure out. They’ve referred me to the undiagnosed disease center because we’ve spent 2 years testing, poking, prodding, imaging, biopsies, etc.. and nobody is close to knowing what’s wrong with me. Thanks for watching the video! Hope to chat again.
Yes, can only wear sterling silver or gold - nothing else without breaking out & skin oozing . 😮
Interesting. Never met anyone else with a metal allergy like that. I get such bad rashes and just cannot let metal touch my skin unless it’s solid gold. Even silver bothers me.
Hyperhydrosis is common in lupus menopause certain cancers and dysautonomia like POTS(posterior Orthostatic tachycardia syndrome)
My wife has POTS. She struggles terribly with it.
I'm sure I have POTS. not diagnosed. Tachycardia 186 with change of posture for a year and bradycardia less than 40. Recent attack of rash on arms and legs and butterfly rash with fever 38.8 C. Really feeling ill.
Thank you for sharing. I totally get exactly what you describe. No one can understand unless you experience it!!! May God bless you on your journey.
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!!
the worst thing for me is that lupus is stealing my youth from me. i'm 19 and I feel like I'm 90, I can't do anything, I used to workout a lot (because of wrestling) and weighed 195 at 17, I got diagnosed at 18 and my life just went to shit. I now weigh 168( extremely skinny for a 6'1 dude), can't go to classes, can't hold a job and these joint pains are so bad.....
Oh man that sucks. But I get it. I spent my whole life not knowing I had it. And because of that I didn’t play sports and I appeared “lazy”. Well when you’re fatigued and have lupus the pain and energy just isn’t there. My whole childhood I was belittled for being a pussy, weak, loser. I was bullied incessantly and physically assaulted dozens of times. My childhood was unbearably miserable. It took til nearly 40 to find out what I have and now it’s like I hit a wall and just cannot get any better. I just keep slowly getting worse. It’s a horrible feeling. I’m glad you’re here man!
Hello, I am a 67 yr old man with SLE and have been dealing with it for 25rys. Everything you have gone through, and going through now is really my story too.
The worst part is the gaslighting. It took me like 5 years before a doctor would even take me serious enough to do testing of any real kind other than a CBC. I thought I was going crazy. I was justified in the end with the diagnosis, albeit not a wonderful thing to learn about yourself.
Please what medication are you on,2 years now for me since I have lupus not good at all in and out hospital every 3 month or 2 due the lupus flare up,especially abdominal pain,
My lupus has never been brought under control. They’ve me on Hydroxychloroquine 200mg 2x/day. And now I started on Benlysta 200mg injections. I haven’t noticed feeling any better. My labs are all typically “off” and out of range. So far I’ve had no successful treatment and I’m also dealing with another serious medical condition which may be causing some complications.
I have Lupus. I'm 77 yrs. I've had 5 children and worked 10 years for hospital and other jobs. I always thought I felt tired and sick because I'm a borderline diabetic. But now it's kie full blown. One day I have arthritis in my thumbs wrists. Next day pain in kidneys, heart, bowels. Depends on how much stress I am under. Once I awhile I have a good day. You never know. I think one of my son's has it. So I relate to this young man's story. God less him. Virginia, Reno,NV
Ugh, yeah that all sounds familiar. For me it's a huge roller coaster ride. Sometimes I have these symptoms, sometimes those. The main constant symptoms are the pain in my hands and fatigue like I just can't describe. I feel like I weight 400 pounds and can hardly move and everything hurts. I also have a ton of nausea.
Sorry for your lupus.
Thanks a lot for your video...I am from Cyprus...I diagnosed with lupus ...before 1 month ...at first i thought is denontydis one year ago.... I wandering if with diet we feel petter...❤❤ thank again...
Best of luck! Thanks for hanging out for a bit.
This sounds more like me
Thank you for this video. I’ll be going to the doctor in a couple days and I am pretty sure they will confirm what I suspect is that I have lupus. And probably have had many years. I’m hoping that’s not it but in a way it may be a relief for me to know what I’ve suspected when I knew something wasn’t right for a long time, this is really a tough journey and I can totally feel your pain when you talk because I’ve had pretty much all of those same symptoms not so much the rash although I do have one on my leg now but everything else I could totally relate to wishing you a long and healthy life stay strong
I found solace in the diagnosis. I was vindicated. I knew since I was young that something was wrong with me. And to this day it seems like nobody really cares to help all that much and I’m terribly exhausted and discouraged. It’s a hard thing to live with and I also have fibro as well as an undiagnosed bone/bone marrow condition.
I truly believe life is a battle for all of us. For some more than others. There must be a greater purpose to the pain. More than suffering. I am using it to hold tight to my deep faith in Yah and to see it as a cleansing, a humbling and of course it keeps me relying more on the power and strength of the HOLY ONE more than on my own power and strength. In the end, YAH will make all things right. HE is looking at us for a pure attitude and THAT I believe is the test. Stay strong 💪🏼 You are helping others as much as you can. I hope you get the healing and reprieve you seek to continue fighting and helping others and your family.
Can a person with lupus get any financial help from anywhere? Disability?
Yes you can possibly qualify for disability. I have been fighting for it for 2.5 years and most people say it’s a fools errand. Problem is that Lupus is so broad and these doctors don’t seem to understand how hard it is to hold down work when you’re always sick and in pain. And if you take the meds they give for those issues then you’re tired and groggy. And if you have a flare then you’re absolutely done for and can’t keep a damn schedule and get fired. So it’s like what do we do?? But if you do try for disability, I suggest you get a lawyer to do it right from the start.
50 yr old male just diagnosed with Lupus ,I've had issues since after recovering from lead poisoning in 2018 ... Started with what I called and thought were " hives" on my face , then EVERYONE of my joints would hurt , it gradually got worse and has effected my ❤️..... I had also taken Hydralazine for my BP . At first I was diagnosed with DLE . My doc figured it was about the perfect storm
Oh man that stinks. I’m sorry you’re going through this. I can relate to so much. My joints are my big issue. They never ever stop hurting. No matter what my labs look like, I don’t feel better! It’s so exhausting. Glad you’re here Bryan.
Please help . I have had the SAME thing 😢. The rheumatologists call it migration arthritis have done absolutely nothing! What tests will show I have it ? I need to get the proper treatment started but they still haven't properly diagnosed me. What do I do? Thank you. I'm suffering over here
Ugh that stinks. Well to have Lupus you should have an autoimmune panel done and it will, at the very least, show a positive ANA. From there, there area a lot of different possibilities. My lupus presentation is not typical. I have a super high dsDNA but my c3 and c4 are usually fine. Find a new doctor or have your primary run an autoimmune panel test.
I have skin lupus and systemic. Was treated with Benlysta IV treatment with lupus specialist. I have had it for years and the deadliest fatigue has left me to stay indoors to sleep all the time. Effected kidneys and lungs. Then crossed over to Mixed Connective Tissue Disorder and Sjogrens disease. I am constantly fatigued and my quality of life is not good. Did they give you Plaquenil and steroids?
You’re just the person I’m looking for. What does skin lupus look and feel like? I have had horrible “acne” down my back for years but I have always known it’s not acne, I have some thing else going on. My dad thought I had something in my blood. But I just get very strange cystic like boils and at times when it gets bad I can have a hundred or so on my back. Sometimes I only have a couple. I have scars from them. No acne meds would touch it. And the fluid inside smells horrible like infection. Does any of that sound anything like Discoid Lupus? My wife and I were just wondering last night if you can have both forms.
Thank you for posting this! I’ve been sick on and off since I was 15: back pain, seizures, sun intolerance, weird “rashes”, migraines, low grade fevers, awful shoulder and neck pain, numbness and tingling, asthma like symptoms and I have had a positive ANA, positive double stranded DNA test, positive for protein in my urine, yet still waiting on a DX! Oh and also highly allergic to bactrim!
That bactrim allergy was HORRIBLE for me! We thought I was dying! I took it for almost a full week before we figured it out. I would sweat and shake and lose control of my extremities, I’d drop things and nearly fall over. 104 fevers and bloodshot eyes. It was wild! I’m glad your getting somewhere. The diagnosis is a huge hurdle to get through. Next up will be slowly figuring out what medications work. I haven’t had protein in my urine so my kidneys seem to be ok so I’m grateful for that, however I do seem to have what seems to be neurological involvement or possibly a completely separate condition causing that! My doctors know I have lupus and Fibro, but we’re missing one piece to the puzzle. I have a whole set of symptoms that don’t jive with either of those and we can’t figure it out. Seizure like activity with my eyes, bone marrow signal issues in my skull base, lesions on my brain and even osteoporosis of my hips and pelvis that we found in my early 30’s. It’s a real mystery and it feels like I’m never gonna have resolution. Fingers crossed!
I’m a man but I also have positive Ana 1:640, positive dsdna 1:40, entire face has rash, sun sensitivity rashes, protein in urine in the past, joint pains, neurological symptoms, anxiety, depression, heart pain, shortness of breath occasionally, numbness, raynauds, tingling, horrible fatigue and stiffness and STILL rheumatologist says it’s a false positive you are perfectly healthy and also men don’t get lupus. Damn!!!!
I think the only reason I’m not in the ER is because I force myself to workout and eat healthy and take vitamins and protein shakes my entire life without fail. I take like a week off from the gym and I feel worse instead of better. Even though the gym is painful my muscles compensate for my weak joints and I think that’s why I can still do a lot of things.
Forgot to mention very frequent low grade fevers, stomach issues and night sweats every night, insomnia, tinnitus, mouth ulcers, frequent armpit swollen lymph nodes and many many more symptoms… Also everywhere I read a positive dsdna, positive Ana and symptoms is like 99% you have lupus. The chances of me falling in that 1% is laughable
The headbanging symptom - does it feel like suddenly there is too much gravity on your brain? Like you are on a roller coaster kinda but times 10. This is one I have never connected to whatever I have going on but experience it from time to time. Almost drops me sometimes.
It’s almost like I’m tumbling over and over. It’s not so much head banging as it is like being in a tire rolling down a hill. Just end over and over end. The first time it happened I thought I was in a car accident and died. It was so intense it felt like I face planted and then a second later I realized I was alive and it was just light flying by verically so fast I couldn’t make sense of it. Then later on I was around some friends when it happened and they looked at my eyes and they were just bouncing up in down so fast it scared them. It’s terrifying. I haven’t had it horribly in years but I randomly get a mild version of it every couple of weeks or so. Sometimes it’s very minor. I can feel it coming on.
I’m very sorry 😢 I have lupus too it hard when people don’t understand.
My name is Jeffrey
I am right there with you brother. I suffer 95% of the same symptoms as you. We are going to try a new infusion soon. Hopefully that one helps, not hurt. I have rheumatoid arthritis as well. So far we have tried methotrexate, it almost killed me twice with serious lung infections. I am currently taking hydroxychloroquine, which helps a little. I have tried truxima, rituximab, and recently benlysta. The benlysta helped the fatigue but not the joint pain. We keep on pushing through, but I can't work, so my wife is. Hopefully they can get your lupus in remission. Good luck.
Good luck to you too! I was on benlysta for about a month and then had to go off because I got Covid and then I spiraled for months here being sick. It’s been hell. I hope you find some relief soon because this is so exhausting.
My baby girl just turned 13 she started having migraines around 6 and having fevers her knee bothered her from 9 to now so I took her to the Dr fluid is in it effusion. well a couple day s later her ankle got huge no injuries so the Dr is sending her to rheumatology bc he says that is not normal at all she has also had back pain that drops her from no where . Testing is junk in my opinion they have tests they can run but they run so many that don't matter it's ridiculous I want to take my daughters pain s away. I'm trying to find out what my fatigue is from like you explain fatigue better then anyone cause it is making me insane a mental case I have no reason to have it but I had recent huge unexpected weight loss for no reason and just found out I got some spot s in my upper body so I'm getting tests done too anyways I just want to get to the point with Drs for my baby girl is hard to have watched her suffer a few years i suffered a disease when I was a child till I was an adult her issues haven't went away but got worse with her passing birthday... I can't take bacterium either but I don't have lupus.
Sorry your sweet little girl is having a hard time. I’m not really sure how to help, but if it’s an expression or information you need then I’m here for you. The doctor is sending her to rheumatologist probably because they don’t know another explanation, if they’re suspecting autoimmune then that was the right move, make sure they run an AVISE SLE CTD panel for DIAGNOSING her. That is the gold standard so if you can work your way into a test that’ll be great. And most of the results are easily accessible and you’ll know what she likely does or does not have with that one big test.
The uv rays kill me too have to wear sunglasses in the grocery store too obviously store don't have uv rays but those lights in the store can give me a headache make me feel like I'm going into a seizure
I’ve had light sensitivity as well. But for me the sun is the worst. It ruins me. I get so lethargic and nauseated. And then the next day or two I’m just wiped.
I am writing all the way from SA. Thanks for this. I have been struggling with very bizzare symptoms as well. I have been to so many dr over the years. My main symptom is full body oedema. My last dr diagnosis eas idiopathic oedema. However my ANA is elevated. Ena positive. But was told it's not really that bad. I am duiretics to help clear the swelling which have helped me over the last 10 years. I was really surprised that you also experienced swelling. I went off the diuretics for two weeks and picked up about 20 kg of fluid. When i was with the last dr last month.
Also to prove that the symptoms are real!
But now i have to take 2 a day since one isn't working anymore. Hearing its in my head. Self inflicted oedema, abusing meds, eating disorders....the list goes on! I am truly glad that you found your answer. I guess my journey is just longer. Wishing you well.
I do t know about an answer. I still have not felt better, even for one day. My Lupus is worse than ever and we now found a genetic mutation which is causing bone marrow failure and a telomere biology disorder which is a terminal condition with no known treatments or cures. Makes sense why my symptoms have been so off the charts for so long. Also likely causing my lupus to flare and the genetic mutation is known to cause resistance to immunosuppressive medications which is exactly what we need to treat Lupus. Things got a lot more serious recently. Back to square one with no real solution.
Are you able to work full time still? I'm finding it tough.
No. I can basically work about 2-3 hours/day max. When I wake up it takes me a couple hours to get through the pain and severe stiffness of waking up. I can’t close my hands when I wake up; they’re so stiff I have to work them in, and it’s excruciating. The same with my feet. I don’t feel safe to drive. Then the medications I’m on can make me tired and have issues with memory and things. It’s taken me years of playing with my schedule to figure out what works in a way that allows me to not feel overly sick. I always hurt and I’m always a a bit sick, but if I push myself past that line, I will pay for it. After a week I’ll be a little sicker. After 3 weeks I’ll be hobbling. After a month I’ll be puking and unable to stand on my feet. I’ve been fighting for disability for 2.5 years and we will see how that goes. I’m not holding my breath over it. But I surely have no other option. I go to the gym 2x week for an hour or so for exercise and that also took a long time to dial in. And I work part time for a real estate brokerage doing marketing from home.
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.
Hello, just wanted to comment that I admire you for your spirit to keep your mind and body busy, your not sitting around in a pity party. Bless you, keep on keeping on 😇
Wow, thank you I appreciate that. It’s surely difficult. I haven’t made a video in months because I’m just so damn sick and my hands hurt so bad. I’m hoping to get back to it soon.
Can you please talk about dissociation please I have same problem with work my hans are so painful I get eve thinking you said too!
I will put that on the list of topics. I haven’t put out a video in some time as I’ve been really sick and going all over for doctor appts and referrals to everywhere. I have a second condition which includes bone calcification, bone marrow issues and a bunch of really random symptoms and my doctors have tapped out and referred me to the undiagnosed disease center. I don’t think I can afford it. I don’t think I’m going to ever figure out what’s fully wrong with me.
I just want to sincerely thank you for making this video as I've been so depressed and alone for the past month. Literally everything you said from when you were younger to now is exactly what I went through especially waking up with so much pain especially in my joints and muscles. I still haven't gone to the doctor yet because I'm just scared to hear what the doctor is going to say, but I plan on going in soon. God bless you for telling your Lupus story🙏🏼
I don't know if I have lupus but everything you said points directly to it especially the part when you spoke about thinking it was just acne as I have been suffering from the same exact symptom with sleeping and waking up to seeing blood on the bed sheets from my back. Please continue to make update videos I just subscribed👍🏼
That’s such a difficult struggle. I see you asked some other questions too so I’ll answer some of those. I would get to the doc asap because this whole process is so slow and takes forever. Ask for the AVISE CTD testing if the test for autoimmune and you have a positive ANA test.
i'm not sure if i have lupus, but i have flare ups when i eat chocolate. guess what my favourite food is!
Haha! Always. It could be. But there’s also a lot of autoimmune conditions that have flare ups associated with diet. I’d get some testing! And… lay off the chocolate. (I need to take my own advice on the latter). 🤣
I have all the same symptoms and I feel like my doctors will not diagnosis
Look into the AVISE SLE panel which can be used to diagnose. I do not have a typical presentation and so it was hard for me too. We found the answers in the AVISE test.
I feel like i might have this. Alot of strange symptoms that i dont understand. Its not pointing to anything thats straight forward. Trying to get the doctors to listen is a process in itself
Yeah, I've had decades of knowing something was wrong but kept being told "you're too young to feel like this" and then just left to figure it out. It's a tough process. But go bring it up and ask directly to test for the ANA. You should be able to get a simple blood test that can rule it out, or in.
the dry mouth could be apart of 2 things, medications or Sjogren's which is a common secondary disease. I have systemic lupus now for 17 years. i also have what's called secondary mast cell activation syndrome, im permeant allergic to some things like metals unless 14k gold or more. its unfortunate that lupus at minimum takes about 5 years from 1st symptom to diagnosis and sometimes even longer then men if they aren't severe(ie organ involvement)..i was only diagnoses quickly because im black and spanish & because of my color a kidney function test was done and my kidneys were failing. but ur describing my life. the pain is nothing ive ever felt and its constant and never ending. as a result of lupus i have class 4 irreversible kidney disease, heart disease with chronic pericarditis, npsle & almost everything u described. if you need to chat im here.
fyi the pain in ur sternum could be costochondritis. i also have bad eye site from lupus. i wanna just chat with u lol im still watching the vid and its like a mirror.
Hey! Glad you’re here. I was taken back by your metal allergy. My metal allergies are horrific and the same thing. It has to be 14kt solid gold or higher it I will break out in a horrible painful rash. It took me around 20 years to get the lupus diagnosis, albeit I didn’t know what we were dealing with until they found it. I’ve been going to docs regularly for my whole entire life and have always felt like nobody was hearing me. I’m not trying to be a pain in the butt. I’m just really not OK. We also lived so rural and small town backwoods that we didn’t have the best doctors or medical system. I’ve been being treated for lupus for roughly 7 months and I don’t feel any better. They said my labs looked a little better so now they don’t want to put me on benlysta or methotrexate which almost made me cry because once again I don’t feel any better or ok and I’m just being dismissed. I keep fighting off the urge to just stop going to the doctor anymore and if it kills me then fine I’m done suffering. I just want a full life and it seems so far from reach. Last week or so I’ve just been fighting off the urge to vomit constantly. It’s like I can’t get it to go away.
Anyway, I’m thinking another starting a man with lupus Facebook group soon so we can all communicate a little better and more constantly. Plus their notifications work way better than TH-cam!
I’m sorry your lupus is so severe. I luckily have not had any kidney involvement yet. But my urine has so much foam I just don’t know how it can’t be. But my labs are ok. I think I have a lot more npsle kinda stuff going. The neurologist cleared me but I am about half as sharp as I used to be. I was always the guy in the room people would turn to with complex questions and math problems in my head. I was the administrator for my healthcare facility because I was good at reading intricate state regs and writing policy to correspond. Now I can hardly finish sentences and I can’t even remember a 7 digit phone number at all. And when I flare one of my first symptoms is severe anxiety and sever depression. I get sulcldal and it hits like a ton of bricks and last forever. And then wham, just pop out of it and it goes away and then the rest of the flare does it’s thing and then I have about a week and do it all again. It’s just never ending.
How did you manage it my fingers joints are so painful
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.
Thank you for this video. I was just diagnosed and started hydroxychloroquine. I started feeling symptoms after my second covid 19 infection (fully vaccinated) which was pretty severe. I literally felt like a different person because of the exhaustion, depression, confusion, pain and mental decline. I immediately felt like I could never go back to my highly stressful 30 year career. Just the thought of it made me nauseated. I'm just glad I finally know what it is! I'm optimistic and hopeful about treatment. Thank you for making feel like I'm not crazy!
Oh man that hits home. I started getting really sick a couple years ago and I cannot hold down work because every time I get to working, even in the computer I get sick. Like fevers and throwing up sick. I only get a couple hours per day to be active physically or mentally. Nobody seems to understand how devastating it is. I have a second condition we can’t diagnose and it involves severe bone calcification and bone marrow issues. I’m struggling terribly, my friend. Hang in there and stick around. I’m gonna be making some more videos soon.
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
The uncontrolled eye movements are nystagmus
I will look into that. Nobody has ever diagnosed it and it’s terrifying when it happens. It’s been happening about once a month but very mildly.
I'm the same way but not tested yet . But what kind of test do they do on doctor 😮
The way I was diagnosed was with the AVISE panel testing which is a diagnostic for Lupus. Check it out. It wasn’t cheap to have done but it got me diagnosed finally!
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?
First, sorry you hear you’re sick but I’m glad you’re here talking. I was tested for MS but did not have lesions. They found some small white matter lesions that they felt were normal for my age, however they did find a bone marrow issue in the base of my skull. Still no diagnosis or answer to what that is or why. But to answer your question; it’s complicated. Short answer is yes, I have days where I can barely stand and where my knees give out and I have fallen. The causes as to why could vary widely.
@@manwithlupus Thank you so much for the reply. Not many understand what it feels like dealing with this. My blood tests are done and almost all are now related to Lupus, Ana, Ena and so on. I still don't think that could be positive. But it is clearly an inflammation issues that comes and goes. I have the lesions, but not many typical once and they didn't get more yet. My breathing problems and low oxygen levels from time to time are not explained by MS, but could maybe by Lupus??? The spinal tap clearly shows inflammation. So it will be interesting to see where this goes. I understand MS from my nursing background, but have to say, have not had any patients with Lupus. So much has changed in the last 30 years too. But am learning now, so I know what questions to ask. At the moment my arms give me trouble, hopefully it settles quick again. And hope the hot weather is over soon, it makes a huge difference.
Did you do a lot of biking when you were young?
Not excessively. I rode bikes almost daily but it was transportation mostly. It wasn’t that we rode all day long.
My dad has lupus it has been a depressing it sucks but he still is alive ❤❤❤❤❤❤
At least you still have him around but it sure it difficult.
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
I’m so glad to be here for you. And glad you’re here for me! The pain is so terrible and nobody can seem to make sense of it. They never know if it’s caused by lupus or whatever other unknown underlying condition(s) I may have. But I know that my numbness and joint pain and nausea and stuff all seems to be tied together and so it makes me think it is my lupus. I do have other pains and ailments that seem to not be correlating to the lupus. It’s all so confusing when you have numerous symptoms and conditions. Hang in there and be sure to subscribe so we can keep chatting!
Thank you for sharing. 52 year old man who was diagnosed with lupus two months ago. I'v lived so long not understanding what was wrong with me. Hearing another man's story is helpful. Dr don't even consider this with men.
My God I am so glad I found your channel.... I am suffering so bad with every single thing you have listed in this video...😭
I’m sorry it’s like that. Clearly I get it!! It’s a hard road but just keep trudging and keep us posted!!
recently found a new rhuematolgist who did all the blood work again and everything came out negative. I had a positive ANA and was diagnosed in 2015 and years of ups and downs and being so sick and now negative ANA and no treatment. I have all the symptoms of Lupus but have not had the lesions since 2015. I am devastated and lost@@manwithlupus
I'm also a men with lupus diagnosed one month ago and I'm very worries about it. Most of days i spend with stress and depression..
Well, welcome to the channel. Please be sure to subscribe and stick around. I am trying to build a community of men that can support one another. I have only had my diagnosis for roughly 6 months and I am in the same boat. I am struggling to work. I am struggling to do things that I enjoy. I’m struggling to exercise. Finances are hard. Relationships are hard. Everything just seems so very difficult for me right now. I totally feel you man. Let me know if there’s any video topics you would like me to do and I will see what I can come up with
Actually I'm from Pakistan and a Muslim guy diagnosed with RA with lupusa month ago.i had an experience of this category of disease with my sister with the same symptoms and now she's on dialysis and we are looking for kidney transplant whenever i get a donar. Already struggling for my sister and suddenly i got the same disease. Doctors says that this disease is genetic.i hope that i can fight for this disease as long as i can.
Wow. I’m sorry to hear this but I’m glad you’re here brother.
I am suffering lupus for 25 years am a registered nurse I looked after a lupus patients for30 years I know what are the manifestation of lupus and the management
More than 10 yrs in trying for diagnosis. Finally getting a biopsy. Im ana negative and im praying that the biopsy will be what ive been waiting for and confirm lupus. I think its longer tgan 10 years but 10 years is when i could no longer ignore it.
Biopsy for kidney disease?
@@NNunez-ny2jh انا عملتها وطلعت الحمد لله سلبيه
Thank you for sharing
My pleasure
It's too weird for us to have the same symptoms, and have dealt with the issue of " oh just buck up".I have been dealing with gas lighting from many health professionals.
totally relate I was finally diagnosed in 99
Dang. Hope you’re doing well.
Things are day by day but with a positive attitude Things only get better
Sciatic pain is horrible! OMG!! To ER…
Recently had fluid removed from my knee 2 weeks ago.
I’m so sorry you have to go through this. I can relate and some days I am tempted to turn to alcohol because the pain is unbearable.
Yeah I agree. Alcohol doesn’t do it for me but I get what you’re saying. The worst part is that it never goes away and so when I wake up my tank is already almost on E and I never get reprieve or get to reset and go back to OK.
@@manwithlupus Yup, I feel like we are just surviving, not really living. Other people don’t get it.
Im light sensitive and wear glasses yr round in or outside. Since i was young but mostly by my 30s i cnt see outside without glasses its too bright ill go blind my eyes will hurt and water and i vnt see or walk around without glasses. Sun itself kicks my butt. Last time i was outside in summer for an hr in sun and heat cost me 4 days in bed as if my body and brain were on fire and i was buried in sand and like im suffocating
The severe fatigue makes you depressed
It sure can. I’ve had a lot of support from my wife. I actually have asked her recently to verbally give me permission to rest when I’m in that state because I feel so guilty for not working hard but it’s literally impossible. So when she says “it’s ok babe, lay down, I got this today” it takes so much pressure off and I have much less anxiety and depression with it.
@@manwithlupus I realized my lupus was due to a toxic marriage. Mine judge me as lazy. After he left, I started healing. Good for your wife
I have been diagnosed with SLE lupus and I'm on this new medication called Abatacept 125 MG/ML SOAJ
Inject 1 pen (125 mg) under the skin once a week. I'm on sulfaSALAzine 500 MG tablet and hydroxychloroquine 200 MG tablet. If I don't take this medication I cannot walk and swollen joints pian. Most of all your sidfect I have. For me hiarloss, inflammation , blood pressure, 🔆 light, exhausted, my lupus was attacking me liver and it has stop plast five years. I have Osteoporosis! I'm on disabilty but I'm in community college I'm 58 years old. One of my child hood system was fatigue and ball spot patches hair. I need to take vitiams and B25 and vitamins e and fish oil.
I was just denied disability after 18 months. We are appealing but I’m feeling really discouraged and lost. The appeal could take another 18 months and I just have this horrible feeling they will not approve me. We can request a hearing before a judge after that but again, nothing has gone my way in like 7 years and I’m scared and alone and really having a hard time right now. I’m glad you’re here and thank you so much for the comment. I will definitely do some reading on those medications.
Thank you Ryan ❤
Thank you for watching!
Also - the sharp pains may be peripheral neuropathy. I have that too.
I'm into my third year suffering from this. I'm 67. I have so many of your symptoms, apart from the acne. I get a very sore throat and find it difficult to swallow. On top of it I also suffer from Raynaud's syndrome. The tendons in the palms of my hands and fingers are very hard. All my joints hurt, some days more than others. I woke up this morning and and can hardly bend my left leg because of the pain in my knee. Yesterday it was my right wrist. When I have a full on flare up I totally lose my appetite and also find it difficult to swallow liquid, let alone food, so have drastric weight fluctuations. I have extreme night sweats and flue like symptoms. I have to have home oxygen because I can't breathe when I gave these flair ups. I get those stabbing chest pains that you talk about. The Rheumatologist prescribed a drug called Hydroxychloraquine, which I had a very severe adverse reaction to. My hair fell out and I looked like I had third degree burns from head to toe. I thought that my fingernais were going to fall off (they didn't). My body shed its skin 5 times, before my skin would settle down to normal a normal colour. I was in hospital for a month.
The Rheumatologist thinks that I have "Adult Onset Stills Disease", also an autoimmune disease. He had previously diagnosed me with Lupus and Sjogrens Syndrome.
I also have reynauds and it is extremely painful, especially during the cold months. I'm glad it's warming up here. But I have so many random symptoms and they all come and go and it's so hard to navigate life this way. I also have a ton of trouble eating.