My Lupus Story | Systemic Lupus Erythematosus
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- Опубліковано 23 гру 2022
- 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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Are you enjoying the content here on "Man with Lupus" Channel? Check out another great video here ----> ua-cam.com/video/fU5teJ7ztdM/v-deo.html
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.
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.
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!
The worst feeling is when the people you love tell you its in your head. We know something is wrong but it can takes years to get the right diagnosis. I was always sick as a kid and then after having a few children developed Hashimotos then Lupus and Sjogrens. I did have chronic Lyme Disease. Mornings are not fun.
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
@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.
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.
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!!
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
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 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
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!!
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!!
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
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!!
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’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.
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!
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.
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?!
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.
Thank you for sharing 💜💜 this helped me a lot
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.
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.
You have explained sooooo well exactly how it is for me too! Thanks for posting this to let other people know how it is for us. I not only have Lupus, but I have many other conditions, illnesses, and other auto-immune diseases stacked on top. Life for me is horrible, especially dealing with all that I am in which i need to feel ok to do what i need to but I can't because of the flareup triggers. And people who don't understand what it's like tend to make assumptions (which cause anger and even more stress and depression) then I end up VERY ill for several days.
Oh man, yeah I totally get the stacked conditions. I have Fibro on top of lupus. But I also have a condition that we cannot figure out what it is. It’s been absolutely killing me. And then I’m certain that it’s causing my lupus to flare constantly. I feel like I’m in a perpetual state of flare. What you said rings so true and hits home. When it’s non stop, with no reprieve it is harder than anyone can imagine.
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'm in the process of testing for lupus. I was happy to find your video.
Glad you found us. Let us know if you have questions. I’ll be doing videos as often as I’m able.
Yes yes yes thank you for your story . We are a family of lupus and Crohn's disease family ❤
🙏🏼
Thank you Ryan ❤
Thank you for watching!
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!
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.
I was diagnosed with lupus at 19 and I’m now 76. My heart goes out to you and your family. I have had many of the same symptoms over the years and there is never one answer. If they say ‘it’s just part of your lupus’ but rarely have they found a concrete solution. It is so frustrating when we look fine on the outside and our insides are being brutalized.
It is a horrible thing to have. And I don’t usually look that sick so most people do not seem to believe me. Doctors wrote me off. Nobody would help and they continue to drag their feet. I’m so exhausted and so tired of dealing with this. I’ve lost almost everything and I just can’t handle much more. Thank you so much for your comment!
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.
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.
Came upon your video through a series of others talking about Lupus in men. I got diagnosed little over a month ago and it’s just a whirlwind of emotions. I’m still learning and searching for my knowledge on the whole thing, but on the other hand, it’s “nice” (using the word very loosely here) to know that all these symptoms and problems are from one thing, and not 4 or 5 different diseases like I was afraid it would be. Thank you for the video, man. I hope things improve and get easier, for all of us.
I totally get it man. Once I got diagnosed I was just floored. It’s a long, slow, difficult road with Lupus. Unfortunately for me I have a second condition and after 2 years we still are nowhere near a diagnosis. My disability claim just got denied too, so now we have to appeal and fight for it. Every process takes SO long to get through. Even the medications take months and months to start working. It’s a serious ride man. Stick around and keep at it bro!
Hey brother, your video has been very eye-opening for me. I don't have a diagnosis yet, and I was hesitant to say it is Lupus, but my doctor told me on Friday that I might have this. Your story is very similar to mine. The unexplained pain and fatigue going back to about 14 years old. The hand pain, depression, the over drinking and then sobriety, neck and back pain without being injured. Not able to work, and people telling me to just exercise more, or toughen up, etc... I really appreciate you sharing this with such detail and it was very helpful. I hope you (we) can find some comfort soon, and return back to our lives. I play guitar, so it's been hard to only be able to play a few songs most days. I would type more, but my hands... Lol ✌️
So glad you’re here my friend. The diagnosis phase is truly exhausting. It takes so long and when it comes to Lupus it’s hard to diagnose. I always recommend the AVISE lupus tests. They’re not cheap but they will be definitive if you have enough markers in your blood. Just a thought. Don’t be stranger. Keep us posted.
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!!
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.
Your not alone! Thanks for doing this! I have loupus just found out, and I'm allergic to meds for it.your symptoms are like mine! And I'm 53. My name is Valerie. I also have fibromyalgia.
Hey Valerie! Glad you’re here. Keeps posted on your progress. I am trying to get disability and was just denied yesterday so now we have to appeal. I’m pretty scared. Feeling like they’re going to deny me simply because I’m young and don’t look very sick. But my whole life is upside down. I have had to basically stop doing most everything that I like or enjoy. And then they deny me? It feels very unfair and random.
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.
Your story is so similar to mine God bless you brother
Sam me to you!
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.
I had horrible acne 12 yrs old until high school. Aweful memories that I just blocked.
I call that pain and no moving my gumby days.
I remember at camp I couldn't go on hikes. I was 12. The cabin leader was not sympathetic. I was not diagnosed until 50 as I finally couldn't work.
I am so sorry you have to go through this.
You are so strong to share. I can't share any of my issues as I feel I will be judged.
❤🎉
Yeah I’m 40 and I’ve hit a wall where I only have a few good hours a day and it’s a lot of work to get to that point and I have to use it wisely. Working has become so difficult, I only work a few hours a day max or I start to get fevers and feel sick. My whole life has been turned upside down. I also have had horrible cystic acne on my back my whole life. It was horrible and scarred me all up but yet I still get it. My whole life is just a struggle at this point but I am learning to cope and I’m getting closer with God as well.
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.
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
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
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!
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.
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.
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
God Bless You. I was so depressed and now I feel less alone
We have had so many troubles finding the best insurance
So glad the video helped. I hope to make more content soon. Been struggling with my health and when that happens I have to prioritize and it stinks. But it’s the right thing to do. UA-cam comes after my direct family.
Hi Ryan,
I’m 22 years old, and have been struggling with immense fatigue, numbness etc. that seems very similar to what you are describing in this video. I am in the process of fighting to get a diagnosis, and lupus is one of the things I will be mentioning to my doctor at an appointment I have tomorrow. It’s quite possible I may not have lupus, but I know for a fact there is something wrong with me.
I never really comment on videos, but I wanted to because this video really touched me given my situation.
Firstly, I would like to commend you on your strength. I would not wish my own situation on anybody, and it seems to me like you have fought through far worse than I have. You are one of the strongest people I have ever seen and I hope you are proud of how far you’ve come. I’m going to reiterate that statement - you are one of the strongest people I have ever seen. I really mean that.
Secondly, I want to say how sorry I am that this has been your life so far. Of course good things must have happened along the way, but I really feel the pain you went through from your video. I am sorry that your life has been so difficult, and I hope things for easier for you as time moves forward.
Finally, I would like to thank you for uploading this video and sharing your thoughts and experiences so candidly. I feel like you’ve managed to verbalise some of the feelings I have had for so many years but I’ve never fully been able to articulate. Watching this video made me feel better about my situation, even though it was quite dark in parts.
I really wish you all the best, and I am sorry you have had to deal with what you have dealt with.
You’re very welcome. My life has been falling apart for about 7 years and I just don’t know when it will end. I’ve lost everything and about to lose more. I was denied for disability and we are appealing. It took 18 months for a denial and now it could take another 18 months and I doubt the result will be any different. I just don’t know what to do. I can’t work more than a few hours at crack and some days I cannot seem to do anything at all. This has become a nightmare to live. I appreciate your kind words and I do try my very best.
@@manwithlupus The only hope you can have is that the world/god has a plan for you. I sincerely wish you the best of luck - never give up brother.
May the lord bless you.
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.
I’m so sad to listen to your suffering. I have fibromyalgia and rheumatoid arthritis and now awaiting some tests for lupus. They have found lupus coagulant but need to wait 12 weeks to have another blood test. I’ve noticed my fingers and toes turning blue, have kidney issue, pins and needles, migraines along with chronic pain all over and debilitating fatigue. Last month I had constant pain on my left side, arms and legs so went to A&E thinking it’s related to the heart but they didn’t find anything.
I’m praying I don’t have lupus as I’m suffering so much as it is
Thank you for your honest and detailed history. I really pray you have a good treatment plan soon. Take care
Ugh. Thats tough. I have a lot of the same types of symptoms. I have fibro as well and some bone/bone marrow condition that nobody has yet diagnosed. The pain and fatigue is just horrible and I’m so exhausted. My whole life has been falling apart for about 7 years and I’m just so over it all. It’s like nobody seems to care that I’m unable to make my life work and I’m not ever feeling any better. Just the same rollercoaster Groundhog Day. Hang in there and I hope to see you around.
@@manwithlupusin totally get you.
I hope you get some respite soon.
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.
Thank you for sharing. Sorry the doctors weren’t listening to your symptoms. Some doctors are reactive instead of proactive.
My doctor keeps saying I don’t have lupus sle for 7 years testing positive.
That’s so messed up. I feel like they are always trying to minimize so much of it. I saw my actual rheumatologist this last week, not one of his assistants. And that was night and day. The doctor was so much better than his assistants. Maybe consider a new doc who is on your side instead of against. What do your labs look like? Positive ANA? It’s not cheap, but there is a diagnostic test that can be done called the AVISE CTD/SLE panel. That will be confirmatory for diagnosis in most cases. Thats how I was diagnosed because I do not have many of the standard symptoms.
I’m very sorry 😢 I have lupus too it hard when people don’t understand.
I live with this too. Pain most of the time. Dizziness often. All the same things you mentioned
Ugh. So hard to deal with. Hope you’re at least having a good day today! Best wishes.
I'm showing your video to my neurologist! You've described my life! The pain in your head may be idiopathic intracranial hypertension
Glad I could help! I don’t know what it is but I hate it. I’ve been having those queasy headaches all week. Sometimes they come with fevers and sometimes not. I’m at the geneticist right now trying to sort out this bone and bone marrow issue. Been a struggle this year.
I a so greatful for your story. Im living and adjusting to lupus. Id be greatful for 1 on 1 conversation instead of public. If this is poss
Thank you for being here and I greatly appetite the kind words. Go on facebook and find the “man with lupus” group on there and you can message me or make a post!
Also - the sharp pains may be peripheral neuropathy. I have that too.
Yeah I was diagnosed like 7 years ago I know the back pain, allergic to sunlight, and hand numbness I know the pain but this really helps let me know I mean I have drank for years cause of pain. I was diagnosed when I had a lesion on my skin they did a biopsy and said I had lupus sweating as well thanks for the video it answered a lot of questions
No problem! Thank you for watching and commenting. I get the sweating too. I hate it! I hate it when my palms and the bottoms of my feet pour sweat.
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.
I was 18 when I was diagnosed, first with rheumatoid arthritis, then these all came along like buses!: Fibromyalgia, Lupus SLE, Chronic shrinking lung syndrome, azoospermia, Klinefelters XXY, etc but my eyesight is 24/20 so not all bad. SLE originated in Africa and especially common in black African wonen so it’s quite remarkable that I’m a white male in the UK but such is life!
Yep, we white men make up a tiny demographic of lupus patients and doctor, doctor Hu, said that the less likely of a demographic you fall into the more severe the symptoms tend to be and the more aggressive Lupus is. Sucks.
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 have lupus too. I was a sick child and had epilepsy. I was pretty sick in college. I started to search for answers after college. It took 10 years to get a diagnosis.
Ugh it always takes so long with lupus. It took over 30 for me. Technically I started with severe fatigue and some joint pain way back when I was around 10.
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.
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
Way i describe the fatigue flares i cnt get out of bed like being buried in sand or being on fire.
🌹
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.
Thank you for sharing your story with us. I've had these lupus pains since I was like four my parents were trying to teach me to Walk all I could say is my legs hurt my feet hurt my dad would say ah you just want carried no I was always in pain like you my everyone would say including the Drs ah it's just growing pains. Could not get anyone to help me. Finally was diagnosed with lupus. Even now I get Drs just want to look at me like I'm crazy no your depressed can't stand it anymore. You may want to check a neurologist about the headache had them to then had a stroke neurologist told me I have moyamoya with the lupus. So sorry you have to dey with this monster of a disease I share the same symptoms as you just terrible
I think I’ve had them my whole life too. I recall being a kid and just not being able to keep up. I always felt cold and miserable. I did see a neurologist and they cleared me. So I’m not sure what to make of the headaches.
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 UA-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.
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
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.
I finally had to leave work and apply for SSD took three years to get approved for it but did get it
Jeez. I’m at 18 months and I just got my first denial yesterday. I knew it was coming but I’m so scared. I haven’t been able to work more than a few hours per week for years now. If I try to put in any more I get sick. Lethargic. Extra pain. Inability to sleep. The medications I’m on make my brain not function sharply. I just feel like anyone would be able to see that I can’t hold down work on a schedule. It feels like a very unfair process.
Sciatica was awful this week. By day 4 i cud walk some.
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've noticed the eye issues but mine shakes left to right fast and I had blood shortage to my ocular nerve in the left eye causing blobs or floaters. I'm awaiting test results but the rheumatologist said I should read on lupus but he's not sure yet.
Interesting. My eye issue is terrifying when it happens. It’s been happening slightly over the last 6 months or so but no doctors have any clue or idea what it is. They seem to ignore it like they don’t want to try. It’s very frustrating.
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.
I was diagnosed ten years ago 😮
I have nerve pain in my upper back. At first was an itch, then like a bug bite and then bee sting to losing all feeling in my back and once all feeling came back i cudnt move my arm for 3 days everything hurt, tgen went away and cudnt feel my back anymore since. 10 yrs of tgat daily. Gabapentin helps it not itch or hurt like a bee sting but have not found anything that returns the feeling. Use to be my legs and i had surgery for abdominal adhesion and endometriosis and i regained all feeling in the skin if my legs after but not my back. Nerve and vascular for me. If i get nerve pain ill take the gabapentin and helps right away for me. Im hoping for something to help control future damage cuz i think my nerve in my back is dead or dying.
Oh wow. You have a lot going on too. It’s hard to get a diagnosis without a positive ANA. I feel your pain though. I have a second condition that is very serious. Severe bone calcification and bone marrow issues among many other symptoms. I cannot get an answer. I’ve been poked and prodded and tested and biopsied for 2 years and was just referred to the “undiagnosed disease center”. I’m so exhausted and so burnt out. I haven’t been able to put out videos for a while because I’m just exhausted. I can relate to so many things you said. And I have gabapentin for nerve pain also it helps a lot with my fibromyalgia. Good luck. I hope you find some answers soon. There is nothing worse than not knowing. Nothing.
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 have lupus was diagnosed at 55 63 now i have dsdna APS triple positive. Pain in knees ankle feet shoulder and many more..
Ugh. Thats no fun. My hands and feet are my most painful areas. Followed by my hips and shoulders. It’s excruciating.
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
I was recently diagnosed, just a month ago and my symptoms are weird, I just have thrombocytopenia, sometimes I get dizzy or so tired that I also think it's depression, or I feel weak at times fortunately I don't have pain but I had protein in my urine and right now I have to take a lot of medicine
I was at the hospital because of the blood issue, it was so out of the blue, it's still hard to process how my life has changed the last month and also I had to return to my internship because I'm studying to be a doctor. It's hard because of the stress physical and psychological. Also dealing with the diagnosis and how my life and body has changed, I don't recognise this body, I feel like I'm living a life that it's not mine. I'm grateful to be alive, but I'm still processing and grieving my old self that I will never be again
Oh wow that’s so hard. And I totally understand. I used to have a super high paying lucrative business and everything I did was just flawless, turned to gold. Then all this started taking a toll. I always had issues and symptoms and struggles but the last 5-7 years it’s become unbearable and at this point I’m disabled and there’s no other way to put it. I do have another bone marrow/bone condition that nobody has been able to diagnose yet. So that causes some complications I’m sure. But one thing I’ve learned is to just wear it on your sleeve. People are really open and receptive and helpful and anyone who isn’t, tell them you don’t need any pity. But most people will show up to help. Also, there are a lot of great groups on Facebook where you can find some great people to talk to and bounce ideas, symptoms, thoughts, bloodwork, whatever! Anyway, I wish you the best of luck and hope to hear from you again. Keep me posted! If you ever wanted to share your story let me know and maybe we could start releasing other peoples stories who would like to share them here! Just a thought.
@@manwithlupusI'm so sorry to hear that, I'll pray for your well being and for you to find doctors that can get your diagnosis so you can have the proper treatment. Actually it's so true that theres always people willing to help, I consider myself blessed because my mates at the hospital and the doctors that I've had my rotations as an intern had helped me from day 0, actually I got the diagnosis from them because they put so much effort on me, also they where so supportive so I didn't had to stop my studies because they believe in me. But also theres been some doctors and residents that believe that I'm just playing the victim card because theres things that I can't do and because I'm actually fragile and vulnerable physically. For me it's been hard ask for help but I've come to accept this new life. Also I'll like to share it so more people can find other stories about lupus patients because our disease has so many presentations, for me hearing different life experiences has shlw me how wide is this condition. Thank you for your good wishes and support, I'll also would like to hear more from you! If you have any Facebook group please share it. Love from Mexico (sorry if my English it's not accurate)
I’m going to Mexico in a couple days. Puerto Penasco is a short drive for us! Your English was good. And yes I struggle with having to burden people because I’m limited. I typically push myself too hard because I feel bad and end up sick or hurt. I’ve been working at it but it’s one of the harder aspects of having this condition. I’m trying to get on disability so I can really slow myself down and try to get feeling even relatively better but that’s a whole other battle in itself. Good luck to you! I do have a Facebook group albeit pretty small right now. Just search for “man with lupus” on there and you should be able to find it.
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.
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 understand how u feel it sucks I have had lupus for 17 years and it gets worse but you can see through it. Remember you get 1 autoimmune you get the rest. Try to change your diet it does help either vegetarian or even vegan
Yeah I have been trying different diets.
The constipation - how were your Sjogrens Anitbody numbers? I have Sjogrens as well as SLE and this has been correlated to constipation. In addition I too have the depth perception could be the Nuerologic component of the Sjogrens in addition I believe it could be attributed to just muscle less or fatigue. Your brain thinks you always only needed X effort etc to reach Y pt. Now that is all messed up. My sun/light exposure for me is similar to your symptoms. I try to explain it like it is like I walked to a nuclear power plant.
So I do not have Sjogrens so I don’t think that’s my issue. I have another condition that could be causing the constipation. That’s likely the cause for me. And yeah; the sun just takes me out so quick.
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.
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?
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”.
Hi Ryan and all fellow lupus? Suffers am suffering seams like with the same conditions pain fatigue find it difficult to have a normal daily life sorry to say but wish I was dead but from what I've read today am going to push to try and get my doctor to listen to me and send me for more tests and if there don't I will be going for second opinion anyway good look Ryan and everyone else
Same to you Adrian. I promise that you can walk through this. It will be hard and things will take forever and they get difficult. I understand wanting to end it. I’ve been there many times. And the more I get ignored by doctors the more angry I get. I don’t ever get to feel better but they can just string me along all they want. They go home and are just fine while I’m sitting here just dying in numerous ways.
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.
ive had lupus for 22 years and i also have APS. i have pain and nausea and all the stuff you are talkiniig about i would like to find a really good rhuematologists that understands lulus and aps mine seems to focus more on my joints and that's it. do you have any suggestions on how to find a good doctor? i live in a small town. not too many doctors understand APS, i'worry everyday that i may have a stroke because of it, but most doctors think becuse i havent had a miscarrage i don't qualify. i'm 73 years old and had my kids in my 20s i didn't have APS back then. if i try to walk or exercise it hurts, my joints are always sore and muscles are weak. its a very frustrating disease because one day you make plans to do something and next day you have to cancel. thank you for talking about all this. itt's a lonely disease and i look fine, i don't look sick!
Well I’m sorry you’re going through that. I do not live in a big city either and I struggle terribly to find doctors. I joined a Lupus Facebook group and asked in there for recommendations for my local area. I found one in flagstaff and that has worked well. He eventually opened an office here too! Another idea would be to find the best doctor you can and see about telehealth options. Maybe you’d have to take a trip once or twice per year to see them in person, but that’s better than not having a good doctor.
I hate to get too hippyish, but maybe look into taichi/chi gong stretches and acupressure self massage. If you can gain that much on the weekend and you wake up with severe nausea, that really sounds like a food allergy. Youre reacting to something in your environment otherwise. I use soothing/ cooling foods like cucumber, okra, slippery elm for chronic constipation. I highly suggest quitting inflammatory foods like wheat, corn, dairy, sugar, seed oils if you can. I know most just cant imagine giving up so many foods
I have tried SO many diets including complete elimination diets of different kinds. I’ve done them religiously for months with no difference. I do a ton of stretching, I stay as physically active as humanly possible. The only diet I’ve done that made a difference was the Lion diet and my family freaked out about it because it was only red meat so I stopped. That was the only real difference I’ve ever felt. I also have a bone and bone marrow condition that we cannot get a diagnosis on and I’ve been to oncology, hematology, neurologists, heart docs, skin docs, university hospital and currently seeing a geneticist in an attempt to diagnose that condition. So a fair amount of my symptoms may not be from lupus, but from whatever is calcifying my skeleton and causing my bone marrow to show signs of possible failure.
@@manwithlupus if the lion diet helped, that tells you something dietary is the culprit, bc it's a true elimination diet. The difficult part is waiting as you add one item back in at a time. And some of us react to some foods sometimes and not others. Like eggs and beans for me and I now can't tolerate peanuts
@@manwithlupus wanted to clarify culprit- not a sole cause, but causing more or worsening symptoms. Stretching is good period, but acupressure massage and targeted stretches for certain organ function are a different category. Sleeping earlier in the evening really is best too (now even recognized in the west with circadian rhythm) , but you may have to work and we can't do everything perfectly
Thanks for all the information. I thought I was losing my mind because it seen the doctor didn’t believe me. I know my body is attacking me. I’m not inside attacking me. I don’t know which one it is. I take a lot of medication and the pain is still there. When I go to my rheumatologist, she tells me that it’s not my rheumatoid arthritis. So what is it? I’m working on Finding out.
I’m with you on that one. I have this never ending horrendous joint pain in most of my joints. My lupus labs don’t look bad. My inflammation markers are down. Yet I’m in excruciating pain and nobody can tell me why. It only gets worse, never better. And it never leaves. Pain medication helps a lot but I can still hardly function more than a few hours per day even with medication. It’s a hard road for sure. Good luck!
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.