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Exactly the two always go together. A sickness and a lupus flare, or any surgery’s at 71 years I know what it is all about after almost my entire life, since age 18 suffering with the struggle! Just trust in your self and remember that no one can really understand but yourself what it feels like. Hang in there and God be with you🙏🏻
Thank you! It’s a hard transition to go from a young capable guy to disabled in a matter of years. It’s weighing on me terribly. Glad you’re here to help us through the struggle!
Christ i understand your pain. Im also a young guy diagnosed with a autoimmune condition. I went from being a damn near professional athlete, to being in pain all the time. I can no longer train with weights, its pure suffering.
Totally get it. I train judo and jiujitsu and over the last 2 years my ability to train has gone downhill terribly. Sometimes I can’t even get through the warmups. It’s humiliating, but then again there’s a lot of guys just on the couch eating junk food. They come and train for a week and then bail because it’s too hard. I always want to be like “if you only knew…”
I have started to notice a connection between flares and depression. I’m so glad you mentioned that. I have also started having trouble with nausea and only recently found out that it can be lupus related. So glad I saw this video. Hope you are feeling better.
I have been noticing the same thing, big time! For years, I had no idea that Loupas was even a possibility and my wife and I would go through these horrible boats where every few months I would just tank into a deep, dark depression, and it was a major issue in our marriage, because we couldn’t understand why. It would make her sad and afraid, I could barely make it through because it was so intense. It’s been going on my whole life and now that I have this Loupas situation and I look at the whole picture it makes sense that the lupus could totally be causing the depressive flareups and even my anxiety which I have been struggling with as well. I’m glad you found the video and I’m glad you are enjoying the channel. Hope to chat more in the future!
Totally understand your constant battles with virus and frequent sickness, since my son started to go to kindergarten, he brings him flu, Covid, stomach bugs, infections and of course I was sick often along with him that we had to cancel play dates or changed plans. You are not alone. We are much more vulnerable to sickness,
This has been the worst year of my life relieve to being sick. I’ve been sick for 1/4 of the year so far. That’s so crazy. I keep finding myself wondering how I’m gonna live the rest of my life like this. I’ve been really struggling to work to the point where we’re taking disability now. But I’m sure I’ll get denied for that. It feels like I can’t help from anyone.
I got diagnosed at 29 in march. Started on HDC a day and was a lifesaver until I had COVID. Been two weeks without a voice and coughing my soul out. My lungs and chest are on complete fire. I totally relate to you, man!
Ugh! My son just tested positive for Covid yesterday. I’m terrified. I’ve gotten it the last two years but now im benlysta because my lupus is not getting any better. So… now I have to avoid the dude til we get through this but I know im gonna get it again so I almost just want to get it overwith. The good news is that each time I’ve had Covid, I felt amazing for 2-6 weeks after being sick. I don’t know why, but both the last two years I felt amazing after I finally got better. Then it all came back, but the break was wonderful.
How do you feel on Benlysta? I didn't want to get it because I'm afraid of the side effects. I work in a restaurant so is almost positive that I'll get COVID at any given time. I function on painkillers and Hydroxichloroquine around the clock. But yeah, I feel you on the feeling great. I'm just so not looking forward to the flare comeback 😪
I was only able to be on it for a month and then I got Covid. I’ve been off it since. My labs looked amazing this past week at my appt but I don’t feel any better. Maybe even worse. My doc didn’t out me back on because my labs looked so good and wanted to see if maybe we’re seeing lingering affects of the benlysta and if my labs get bad again then we will go back on it. He also said if I feel really horrible we can start it back up.
@manwithlupus my doctor is still pushing it, but I keep refusing. I was put on Azathioprine to go along with Hydroxichloroquine this last round. I'm on the same boat as you are: labs look great but still feeling bad. If my arthritis doesn't get any better, I guess I'll give it a try. Keep us updated!
@@manwithlupus I’m in a good spell this week actually. Just finished my divorce from a narcissist after 20 years, bought a new property a couple days ago and my grown kids are all happy. I can feel the difference in health already and it feels good. My only issue today is… it’s snowing!!! Guess I shouldn’t be too surprised considering where I live. 😂 I hope you are getting some good rest and having a good day.
@@manwithlupus Thank you. Just as I told you things were great the narc ex pulled a fast one- dropped our home selling price by over $110,000 thereby getting my percentage of house profits by a third. Might not be able to finish purchase of my new place. Shaking my head.
Glad to help! I’m gonna get back to creating content here soon. I have been really sick and trying to figure out this other condition I have. I’ve been to so many doctors and had so many tests and biopsies and imaging, etc over Tempe last few months. I’m feeling horrible but I need to get back to creating content.
I experience this too with viruses and infections. But as a woman, I also experience this monthly. The hormonal aspect is very obvious but I also relate concerning picking up a bug or developing infection. Miserable.
When I got Covid for the 2nd time. I screamed for hours. My knee joints felt like they were being blown off! Threw up for hours and lost all ability to control anything going to the toilet. Migraine came and all lasted for 4-6 days. But I’m sick daily, I throw up daily and nauseous daily. So exhausted I can’t move…
Yep, sounds exactly like my experience. Covid this time was so unbearably painful! I feel for you. The first time I didn’t have irregular pain. This year it was a week plus of feeling like I got hit by a truck. I feel for you!
What's crazy for me is I have Lupus and Sjogren's Syndrome, but I haven't been sick in like 5 years (like a head cold, flu, or covid). Although in a flare up I may have a fever for some hours or a day. I mostly have seizures, trimmers, joint pain, swelling in hands/feet/knees, fatigue, brain fog, slurred speech, slight butterfly rash/arm rash mainly from the sun, losing my grip dropping things, hair loss mild alopecia, trouble breathing affecting my chest, shoulder/wrist pain, brittle nails, chronic cough, dizziness, ear rings, ulcers in my mouth, etc. Great video...
Thank you! I’m trying to put out content that people can relate to and get talking over. You have a lot of the same symptoms as me. I don’t know if I just have a severe case or if my unknown underlying neurological issues make this more difficult for me, but this disease is debilitating. I just feel so sick and worn out 24/7/365.
I’m on the journey rn. My sister was already diagnosed with lupus. I’m obese, pre diabetic, and have high blood pressure. For the past 2 years I have had this immense inflammation in my chest and left arm/leg. It’s horrible, I feel like my body is burning from the inside and it causes me to have panic attacks. I tested positive for ANA 1:160 speckled. ESR is 56, white blood cells high 16,000. No infection, but I get low grade fever/hot flashes and sometimes night sweats. Family has sickle cell… but these symptoms come and go, intensity wise. Some days it’s minimal, others I want to live in bed for weeks. I’m seeing a hematologist to check for any complications, nothing so far about white blood cells. Trying to get bariatric surgery. Next is the rheumatologist cause of the family history of lupus. We will see!
Ryan, no need to ever apologize to us, your brother and sister lupus warriors. We KNOW! Yes, when I have any illness my lupus flares. It’s probably because as the immune system ramps up to fight the illness, the ramping up has caused the lupus antibodies to flare. I have a 4 letter word I now like to use. I won’t say it here but when at home I say it a lot!!!
It sure does hurt when it happens. This year has been horrible for me, I was sick with everything under the Sun. It was like every week it was another infection or bug. And the. The pain and fatigue would hit me like a ton of bricks. Oof.
I so understand this feeling . even with a cold you go into flares and it can last for weeks and months.. things hurt that you wouldn't even thing could hurt .. feel better soon. spring is hear not to hot or cold so I know the weather can cause flare up for me .. love the videos keep them coming plz
My daughter in law was just diagnosed with lupus.she is also a diabetic 2, and hypoglycemic. She has a terrible time. I told her years ago that she needed to be tested for Lupus. Her eyes are affected by her diabetes. She has high blood pressure too and her heart beats at too high a rate. I personally can not help her because I no longer know how. I love her, and I just want to say thank you for helping me to understand this Lupus better.
Oh that stinks. That’s too bad. I get it though, I have an undiagnosed Hable condition that is affecting my bone marrow and my bones are calcifying. I applied for disability and recently received a denial so we now have to appeal, but I’m in the same boat. I am struggling terribly. The more I try to work the more physical I am the more I use my brain, the sicker I get. My fatigue is horrendous and all my medication’s mess with my head and it’s hard to stay focused and work. I feel very very stuck.
Hey Ryan, I wanted to thank you for making this channel. I have not been diagnosed with lupus, but I am pretty sure I have it. I have been dealing with flare-ups for the last six years. I have seen five rheumatologists, and they tell me I don’t have an autoimmune disease. When I try to describe my symptoms, they sound made up. I get random pains in my toes, fingers, wrists, etc., and it’s just random. I feel tired, depressed, and I have a rash on both sides of my nose near my cheeks. But I guess my blood work doesn’t indicate that I have lupus. I have four relatives on my mother’s side who have been diagnosed with lupus. After watching this video, I felt that it described 90% of my symptoms. So I wanted to thank you. I know that I am not just making up these symptoms in my head. LOL.
Ugh that’s so hard. I went through years of that myself where nobody would believe me and it was torturous on my mental health. I thought I was crazy and losing my mind and making it all up. Have you done blood testing? Did you have a positive ANA? That’s the first step. But it does sound like you have some of the symptoms.
I’ve never had as much trouble as I’ve had this year. I also had the FLU and since filming this video last week I got another stomach bug and a flare. Today is my first day out of the house in a week. Ugh.
I'm also a man with lupus with RA positive, i have never heard about this disease. I have now this disease and I'm searching everyday what actually it is,i feel so nervous and I'm depressed. Now I'm on medication prescribed by my doctor. Everyday i don't feel good and can't do my work with concentration.
Yeah, I totally understand that. My doctors have just told me that I should consider disability and so I am starting that process. It looks like it’s going to be a tough journey but at this point I just can’t hold down regular work. I am so sick so often that I just can’t tell you when I’m gonna be OK and when I’m not. It might be two weeks of laying in bed and then three days of being relatively OK and then back to sick for another couple days then OK for a day or two. There’s just no way I can hold down regular work. It really sucks.
Sorry you’re going through this. I know from experience how this feels. However, changing eating habits, exercise and supplements for the gut/others have really helped reduce the pain. I guess at this point we all have to try whatever we can and see what works best for you. Low vitamin D usually comes from GI issues. God bless.
Yeah I’ve spent a few years here trying to find a balance. Trying to figure out what works for me. The best I’ve come up with is the lion diet, martial arts training 2 days per week (keeping it light) and then sleeping better and being on a normal schedule. But I can also be doing all of those things and just get hit like a ton of bricks so it’s not fool proof.
My doctor told me that on my first appt. He said men account for a very small segment. And white men are even more rare. And the more rare the demographic, the more aggressive it can be. I’m struggling horribly with pain and fatigue. Just horrible. Thank you for watching!!
Those bouts of depression can be so horrible. As a kid I had bouts of depression like that regularly as well, it was not fun. As I got older I had less depression and more anxiety. Anxiety is also so very overwhelming. It makes me feel like I need to peel my skin off to escape. I don’t think that’s going to work very well. 😂
Yeah man, it’s really shocking when it finally gets to the tipping point and it gets bad. Most Lupus patients I know tend to say it’s tough; but seem to live pretty normal lives. For whatever reason I can’t get ahead of mine. I’ve been completely debilitated for a couple years now. Up to that point it was just frustrating and made life hard and confusing. But now it’s like I can’t even hold down work. Im sick every single day. If it’s not one thing then it’s 5 others. Pain, fatigue, confusion, nausea, rashes, headaches, migraines, the list goes on and on and on. Hope they can get you on some medicine that works for you and helps! The hydroxychloroquine has not helped me at all so im going to start benlysta soon. We will see how that goes.
I can relate, even though I don’t suffer from lupus. Whenever I’m sick or stressed out both my RA and my diabetes take control of my body, especially the diabetes. I noticed that my numbers are extremely high thus also triggers my RA to flare up! It’s like a lose lose battle whenever I get sick. And for months, I noticed that I wasn’t having much flareup pain, but stiffness but my diabetes was really out of control. Come to know, I was admitted in the hospital for six days and was diagnosed with having colitis. I believe that anyone suffering from autoimmune diseases whenever we get any other sickness, it does trigger our body to go overdrive, affecting us differently than other people that don’t have the autoimmune diseases.
Ugh. Thats tough. Diabetes can be a very tough condition too. I’m sorry you have to deal with all of that. I hope you find some relief at some point. I know I sure would like to find some.
They do overlap constantly. It makes it very hard to discern what’s what and what’s going on. I often don’t know if I’m having just a flare or if I have the flu. And having as many fevers as I do makes it even more confusing. I’ve been having fevers 3-4 days/week for months and months.
I have times when I don't know if it is the fibro or something else. Most of the time I just think it's the fibro and don't look into anything else . Easier to just say fibro.
@@bethjeske1111 I was recently diagnosed with Fibro as well. Still looking into my neurological issues. It’s very confusing having so many things going on. It’s hard to know what’s what and what’s helping or not helping. It’s all very confusing and difficult.
@@bethjeske1111 fevers are usually around 100. Nothing huge, but more of a “what’s going on with me I don’t feel right” and take my temp and yep, it’s 99.9 or something.
I believe I have lupus, I thought it was fibromyalgia but have since started to develop rashes when going out in the sun. I hope things improve for you.
Thanks. I hope things get sorted out for you. I have both and I have an unknown as well. I’ve been really sick the last couple weeks. Just nauseated almost all day every day. Pains horrible too. Just struggling. Hang in there my friend!
@@manwithlupus I am still in an early phase and only just starting to realise how debilitating this is, I have subbed and will join you on this journey, I hope it makes your day a little better. Stay strong.
Glad you’re here. My goal is to have a solid community of people that we can relate with each other and share our stories and solutions. Very happy you’re gonna be part of the community.
I've lived with lupus and fibromyalgia for a lot of years. At the beginning of covid, I found websites by esteemed medical people speaking on Vitamin D. As of now, we can take up to 10,000 IU per day. I was born without a full antibody system, so I've lived with sickness for my whole life. I've been on Vitamin D since January, 2020. I haven't been sick once since I started on it. Hopefully this information will assist you.
All of this sounds like me all day. My aunt died from lupus complications I believe. I haven't gotten diagnosed but my brother I feel this deeply. I don't even know if I'll be able to take care of myself due to lack of energy.
Oh man I hear you there. My fatigue has been really difficult. I wake up and it’s not only painful, but the fatigue just makes me feel like I want to lay down right now.
Absolutely. A normal cold or sinus infection makes lupus flare out of control and the body pain cranks up to 1000. It’s horrible. And yes, the deep depression comes in as well. It’s absolutely terrible. I’m actually noticing that about 4 days into the flare depression comes. I have neuropsychiatric lupus with what looks like dementia. I can’t think straight, I can’t speak well because I forget words (including simple, everyday objects like shoes, fridge, etc.) and my memory goes to sh*t.
Oh you’re just the person I need to talk to! Npsle is something I’m worried about. I have horrible memory issues and I can’t get words out. They’re in my mind but I can’t get them to come out of my mouth. I have been having horrible issues with that. Sitting in a daze just like my brain will not work. I have a suspicion of neuro involvement with my lupus but nobody will seem to address it. How do they diagnose npsle? What symptoms do you have that are specific to it? How could I tell if my suspicions are correct?
I was diagnosed in 2018 with sle and nephritis lupus had the same thing with a stomach flu in December it’s still going on now and now it’s march i notice I’m getting my flare ups around this time
You can have both nephritis and CNS lupus. Lupus tends to act up randomly affecting any organ in your body. There’s definitely a connection to your brain, you’re experiencing physical trauma internally, of course it’s going to affect you mentally and make the flare even worse
Yes I have a sneaking suspicion that my brain is involved here somehow. I have that other condition that nobody can diagnose and so I thought maybe it was that. But a big part of me feels that my Lupus is affecting my nervous system. I was cleared by a neurologist though.
I don’t know if you the same way but I can be ok but 5 min later I swear I can feel the change in my body starting top working down my body with the start of a flare. Of course fatigue, pain and brain fog? Yes when I had Covid I went into a flare making it last for 6 weeks.
1000%. To me, it almost feels like an anxiety panic attack. I get warm and my stomach kind of churns and then I get really anxious, I can’t think straight and lose my place and lose words and then I usually get either a fever, nausea/vomit or really excessive pains everywhere. And to me this seems to happen anytime I get myself up and doing things for more than about 2-3 hours. After that point I start to get this stuff going on. It’s been the biggest reason I struggle to work. Just a couple hours of ant activity and I get riddled with pain and sick.
Thanks for the info! I’ll put them on the list and start to look into them. I’m right in the middle of possibly making some med changes and stuff and I hate to make too many changes at once onky because it’s then hard to know what helped and what didn’t. Appreciate you suggesting this and I’ll take a look for sure!
My grandson had a horrible stomach bug, he’s only 18 months old so I was changing him every 15-20 minutes due to diarrhea and vomiting. The day after I took him home I had a severe case of polymyositis. I hurt in my upper arms and thighs, I was so weak I couldn’t get out of bed. I had to take methyprednisolone to manage my symptoms. I’m sure I was exposed to nasty viruses from a toddler that triggered my lupus flare, so yes, exposure can cause severe lupus symptoms.
Wow! Those little guys sure are full of all kinds of bugs and stuff. My kiddo is 6yo and just finished kindergarten and I’ve been sick for months with everything under the Sun. Hope you’re feeling better!!
Hey Ryan, just wondering what treatments your doctors are giving you? For lupus or the symptoms that go with it? How often are you getting your blood tested and how often you consult with your physicians?
So I see the rheumatologist once every 3 months. I mostly see his assistants which sucks because the appts with him directly are much more thorough and I can tell he really knows what he’s talking about. My case has been so hard because no matter what we do or how my labs look I’m still in pain. It could be my other bone/bone marrow condition that no one is able to diagnose that could be part of the problem. For my Lupus I am simply on hydroxychloroquine at this time. I got Covid so they took me off benlysta and then my labs had looked so good a few months later they decided not to treat me with it unless my labs look bad. Well I just got those done and my numbers are starting to look bad again so we will see what they say at my next appt. My biggest issues are fatigue and joint pain. It never goes away. I’m just living at 50%. I do have some opioid pain medication for the joint pain which brings it down to a level that’s bearable. I’m still pretty limited. I take gabapentin at night for nerve pain, my shoulders and hips just ache so bad at night and I get a lot of numbness and tingling so gabapentin helps. I take ambien to help me sleep, the pain wakes me up. But that’s about it.
Thank u for sharing your video regarding ur experiences. My sister has Lupus and doesn't have much issues. I have Fibro but i have a suspicion i may have RA or some form of Lupus. I am far worse off than my sis. I am suffering 24/7 with severe pain and severe fatigue, weakness, anything ending in ITIS i seem to get. Docs love to tell me to just lose weight, work out, go walk..etc. They have no clue what it's like living in this body ! Anyway,...I can;t get a doc referral to see a ruemotologist cause my ANA shows nothing. Blood tests sometimes doesn't show Lupus. I dunno if i'm misdiagnosed or not ? 😏 Thankx again Cheers 👍
Well I’m no expert on diagnosis, especially if you don’t have a positive ANA test. I certainly have lupus but I also have an unknown condition. We thought it may be neurological but it’s not. We’re not sure. It’s really hard because I don’t know which symptoms are from the lupus and which are from this unknown. Diagnosis is a very hard thing. I hope you can get to see someone soon!
Yes, always, if I pick up something my Lupus goes into overdrive, always has, when i get sick I get really sick. Since having Covid it is much worse and I seem to have some kind of long covid. Where my RA turned from negative to positive and I have bouts of nausea and vertigo that affects my ability to function. I cannot drive and even standing up is a challenge. It is winter in South Africa at the moment and I have already had 'flu 3 times. I work with special needs kids and i have had to cut down my contact with them and when I do go into my Centre, I am wearing a mask, sanitising and having a shower as soon as I get home, all in an effort not to get 'flu, tummy bugs or Covid again. So I know flares are usually a symptom of something else beginning and Covid has had a huge impact. I hope you stay healthy during the warmer months in your area.
Ugh that sounds like it’s not very fun. I’m sorry you’ve been so sick. This year has been tough for me too. I’ve had like half a dozen sicknesses. I don’t usually get sick more than once. But my body seems to be getting more and more sick lately. Not sure what the future holds but I’ll be here doing videos as often as I can.
Depression and horrible horrible anxiety. Like almost had to get some major help so I didn’t delete myself. I’m having flu-like symptoms every day. Throwing up multiple days/week and sometimes it’s all day long. I’ve also suffered horribly from constipation, but I am on opiate medications so take that for what it is. Depression and OCD are regular things for me. I’m not the best guy to ask because I’m just new to all of this. But what I have been doing I training jiujitsu, find a good gym and they’ll let you modify it to fit your needs. It’s kept me stretching, moving, feeling accomplished, learning to take care of myself and makes me feel like a man again. Now that might not be your thing, but you get the idea. For me, jiujitsu just keeps me moving and progressing with my body and it’s totally changed my life. I never did any sports ever, hard to play sports when your bullies do… and nobody believes you. But find something you have always wanted to learn. And go sign up for that class and don’t stop. Best thing I’ve done so far.
I can totally relate. I have been so sick for 2 years especially after the covid shots.. utis, flus, sinus infection flus (3) last winter and I have pyoderma gangrenosum too which are sores with debilitating pain. Life is especially tough hard when you get such with lupus. Covid was horrendous and sometimes it is hard to tell what is from lupus amd what is from the other issues. I also had shingles etc…. Attitude is humongous. I know how you feel but it will be a very different road if you do not have gratitude. I a, speaking from my own experience. I wish you good health and peace. I have all of your symptoms right now with the pyoderma wounds. Feel better Have you talked to the dr about an anti depressant?
Oh yes. I have a psychiatrist and therapist and Neuro doctor all in the mix. I know that gratitude is necessary, I’m just so exhausted. I don’t even remember what it would feel like to be me again. And it seems there is no end in sight. Every day is like Groundhog Day over and over. I’m preaching to the choir, you understand better than I do. So many years and not an end in sight. It can just be difficult and I know other people feel this way so it’s important for me to be authentic. In the end all we can do is one day at a time because we really have no other choice.
I can’t take steroids or I get sulcldal and go off the deep end very quick. The worst things for me are the joint pain and lately the fatigue. Every single joint in my body hurts. And hurts BAD. I’m sorry you’re diagnosed with this, but at least you know what it is. If you’ve made it to 74 and don’t have major organ involvement you might be pretty fortunate and just kind of have pain and fatigue but no life threatening issues. That’s a blessing in disguise for me. I’m in way more pain and have very seriously debilitating Lupus symptoms, much more than most. But I do not have major organ involvement so that is a good thing. I also have a second unknown condition that nobody can figure out. I’ve just been referred to a geneticist and the undiagnosed disease center. I’m terrified too. Thanks for being here!
When you have a flare, have you gotten your vitamin D level checked? I have lupus as well, and if my vitamin D level is low, I can become depressed and I can be more prone to contracting a bug that can trigger a lupus flare. That's what I have noticed
I also experienced a lit of pain etc with covid and other viruses. The extreme emotional symptoms sound like herxheimer reaction from detox, which would make sense, bc your body will actually use a virus as an opportunity to detox. Another possibility is that you may have viruses etc. In the brain (that become m9re active when you are ill) like has been found in MS
@@manwithlupus I just learned today that when people lose visceral fat (tied to a lot of disease bc of the direct link to impaired bloodflow), they apparently have a substantial decrease in lesions also
Im so sorry you're going through this. I had covid and was fine then one day i woke up and really couldn't walk.my whole body hurt it was terrible .i havent been fully diagnosed yet.i find out in 2 days however i saw my test results and its pointing to me having Lupus. I do get nauseated however to fight it,I use Altoids(red can) ,Free Brothers bitters old fashioned and or mint,lemon,cucumber and ginger water (you must make this yourself dont trust the stores. )Try these to see if they help.❤❤❤❤
HI RYAN, I AM NEW TO ALL THIS, (MY OLD DOC, TESTED ME FOR ANA, IN 2015, AND I WAS POSITIVE, THE JERK N NEVER TOLD ME EVEN THOUGH EVEN THEN I HAD MANY SYMPTOMS 😮. I lIVE ACROSS THE WORLD FROM YOU. MY MUSCLES, STARTED PLAYING UP GOSH, LONG TIME NOW TO THE POINT, I CAN HARDLY WALK, I CAN'T STAND UP, I HAVE THOSE TERRIBLE SORES IN MY MOUTH, ( RIGHT NOW IT'S NEARLY 3A.M. I CAN'T SLEEP. I HAVE THIS TERRIBLE NAUSEA, THE PAIN IS SO BAD. FORGOT TO SAY I TESTED POSITIVE, A FEW MONTHS BACK, PLUS MCTD, MY GUESS IS POLYMYOSITIS? THINKING LIKE EVERYWHERE IN THE WORLD NOW, THE WAITING TO SEE SOMEONE, SPECIALIST. I HAVE HYPOKALEMIA. I ALSO, HAVE SOMETHING THING WRONG WITH MY ADRENAL GLANDS, I HAVE A TUMOUR. SO THAT IS MAKING THINGS WORSE. HMMM, I'VE SAID QUITE A LOT, BUT DID WANT TO SAY. I AM GETTING VERY WORRIED ABOUT MY MIND, I CAN'T REMEMBER WHAT I'VE JUST DONE, VERY DEPRESSED, CAN'T REMEMBER NAMES OF STREETS ETC. I HAVE BEEN ABANDONED BY MY FAMILY, I CAN HONESTLY SAY, ACCEPT FOR SUPPORT WORKER'S, I AM TOTALLY ALONE IN THIS WORLD😭😭😭 I HOPE SOMEONE CAN MESSAGE ME, MY COUNTRY IS SO SMALL THERE ISN'T EVEN A SUPPORT GROUP. TAKE CARE OF YOURSELF J
Oh I feel for you. It sounds like you definitely have some lupus symptoms as well as some non lupus stuff going on. I have the same issue. My doctors know I have lupus and are trying to treat it, however my body isn’t responding so we’re changing medications. But beyond that, I have an unknown condition and it’s wreaking havoc on my system. I’m so sick all the time, and the pain is in every single joint. My hands and feet are horrible. I often cannot stand up in the morning for a while. And when I do I limp terribly on both feet because they burn. My hands won’t close for hours in the morning. The pain is terrible. My hips, back, shoulders and neck are always just a deep ache with acute pain upon movement. And yes, the memory issues. It’s horrible. I often walk into a room and forget why I’m there. It’s impossible to work because I just lose track and wonder off. And then of course I still have the fevers, the fatigues which is just unbearable, the Reynauds and everything else. It’s terribly exhausting. I’m here with you my friend. Keep watching and let me know if there’s anything specific topic you’d like me to do a video about and if it seems like it would be a good fit, I’ll do it.
@@manwithlupus THANKS RYAN, I'M SORRY, 😔 YOU'RE NOT DOING WELL WITH MEDS. ( IT'S LIKE A DOUBLE EDGE SWORD) I'VE HEARD THEY CAN MAKE YOU FEEL SO SICK, IT DOESN'T SEEM FAIR. WE SEEM TO BE VERY SIMILAR, WITH SYMPTOMS. I CAN'T GET OUT OF BED, I'M LEFT HANDED, MY LEFT ARM. IS THE ONLY PART OF ME, THAT FUNCTIONS BETTER 🤔 THAN REST, SOMETIMES, I'M TOTALLY PARALYSED, SOMETIMES, MY RIGHT SIDE, IS SO BAD 😱, I HAVE TO TRY AND MINDS MASSAGE IT SO I CAN GET OUT OF BED. ( HAVE YOU ASKED YOUR SPECIALIST, OR G.P. NOT SURE IF THAT'S WHAT YOU CALL THE PERSON, YOU GO AND SEE, FOR GENERAL CARE, PRESCRIPTIONS ETC. ( ANYHOW DID THEY TEST HOMEOSTASIS SPECKLED, ITS UNDER THE ANA TEST. IF NOT,, AS IT SOUND'S LIKE YOU HAVE EXTRA WHAT I HAVE MINE IS POLYMYOSITIS, WHICH AFFECTS THE MUSCLES VERY BADLY, ( SOUND'S TO ME YOUR PAIN IS MORE THAN JOINTS!!??. THERE'S SCLERODERMA ( THAT AFFECTS THE SKIN MAINLY, MAKING SKIN VERY TIGHT. AND SJOGRENS SYNDROME, (THAT CAUSES DRY EYES AND MOUTH, ALL OF THESE CONDITIONS, CAN BE IN CONJUNCTION WITH SLE. I REMEMBER YOU SAYING ABOUT YOUR TERRIBLE DRY MOUTH, HMMM. I'M LUCKY IN A WAY, I HAVE A LITTLE AMOUNT OF MEDICAL TRAINING, I WONDER IF YOUR ✋ HANDS ARE ALSO A MUSCULAR ISSUE, MINE ARE SIMULAR TO YOURS, BUT MINE CONTRACT ALL THE TIME, I CAN'T GET MEDS, OUT OF LITTLE PACKETS, I'VE RUINED MY CARPET, FROM SPILLING DRINKS, TEA, SND YES I HAVE ONE COFFEE A DAY, NOT SURE IF YOUR MEANT TO.. LAST NIGHT I HAD A TERRIBLE FALL, I WAS SITING IN MY .L.B LENT DOWN TO THE SIDE OF ME, BAM I WENT FLYING, LANDED ON MY KNEE'S, MY LEFT WRIST AND HIP, I WAS SCREAMING WITH THE PAIN, MY KNEE'S FELT LIKE I'D LANDED ON GLASS, O WOW, 😲 THEN I CAN'T GET UP, THERE IS NOTHING, NO STRENGTH WHAT SO EVER, TOOK ABOUT HALF HOUR TO GET UP, SO THIS YEAR NOW, IT'S SLIGHTLY MORE THAN A BIG FALL A MONTH. HAS ANYONE TALKED ABOUT DYSPHAGIA, I HAVE TWO ORAL, WHICH IS SERVER, AND LOWER DOWN, FOUND IN 2000, BY MY AROTIC ARCH. I CHOCK ALL THE TIME, SOZ THIS LONG, I HAVE LUPUS MOUTH, OT NICE. YOU ARE HELPING ME ALOT, DON'T FEEL SO ALONE. LET ME KNOW WHAT U THINK OF THOSE OTHER CONDITIONS. THANK YOU J
Anytime I take it do anything to “boost” my immune system I get more sick. I’ve been told it’s likely because my lupus has been in an almost constant flare and remember lupus is your own immune system attacking your own body. So the stronger my immune system the more it’s attacking myself. At this point I’m afraid to ingest anything. If I starve myself I feel better than any other time but of course you can’t do that. It’s a never ending cycle of hell. I’m sick almost every day and I’m in terrible pain every day, all day and night. I can’t get a break or reprieve.
@@manwithlupus I am the same it's hard. I relate 100% . I stay in a flare. And I feel like a vampire the sun and the heat is my worst enemy. When I used to enjoy it so much the sun was therapy for me. Even sitting in the shade I get rashes all over my face. That hardly ever go away. I love to garden and I'm finding that's becoming almost impossible. I tried to do very early morning and late evening. But the heat is really getting to me. I don't eat a whole lot either. I will go 16 to 24 hours at times without eating. The vitamin C Burns my stomach really bad.
Ugh that stinks. I love to garden too. I get the struggle. One thing you could consider, which I did, was I got a tower garden (or you could build one) and garden inside. I didn’t think I would like it but I totally enjoy it now. Just an idea for you!
I am not currently on a special diet however I’m trying to get back into the carnivore/lion diet. I was on that diet for about 6 weeks back in December and that was the first diet that I’ve ever tried which I noticed a difference. I should have stayed on it because now I’m struggling to get back on it. I’m having horrible sugar cravings. My family freaked out about the carnivore diet and said I was doing damage to myself and it freaked me out and I gave up. I shouldn’t have. I immediately noticed more inflammation and pain. I keep trying and I will keep trying to get back on it. I’ve struggled with non-typical eating disorders too so diets are especially hard for me.
I was on carnivore diet also for over 3 months. I noticed a lot of improvement with my inflammation also. I was 125 lbs and lost 25 lbs. I could not keep weight on. That was my problem but there was a lot of positive outcomes with this diet for me. I not totally sure it's why I lost the weight. I went off the carnivore diet for awhile but my body kept craving it. Putting all that other stuff back in my body affected my taste buds in a bad way. Now it's just confusing for me.
@@manwithlupus Hello, your video popped up on my RUclips feed because I have been watching a channel on how a doctor healed her Lupus through diet. I have an autoimmune disease also, and I recently healed all of my pain and some of my inflammation with the Medical Medium celery juice protocol for 30 days. No more debilitating back pain, frozen shoulder, brain fog, chronic fatigue, depression, etc. However, since I have inflammation in my intestines, the celery juice irritated it a bit too much and I had to stop for 7 days and give my intestines a break. I kept searching for answers on how to get rid of inflammation. I did find that Keto/carnivore was a double edged sword. It works somewhat because you are cutting out all of the other inflammatory foods- gluten/wheat, GMO and processed foods, and carcinogenic oils etc. but my situation was advanced and meat, eggs, and dairy were the one of the primary causes of my inflammation! Who would have thought. Unfortunately, this leaves fresh fruits and vegetables for my situation right now. I'm following the protocol from that doctor I mentioned, Brooke Goldner and her book is called Goodbye Lupus. When I heal all of my inflammation I will be able to eat chicken and salmon again and be back on the protocol in the Medical Medium book "Thyroid Healing", but until then I found that the only thing to jump start my body and regenerate my cells for healing is drastic measures with Kale and spinach smoothies with a bit of fruit, and then I'll eventually be able to digest raw foods again and eat salads for dinner, and then as I said can re-introduce a bit of fish and chicken. Red meat is an inflammatory when your immune system is compromised, as your thyroid is not working with your nervous system to communicate with your organs to process them. For MANY reasons that you can research yourself, I found that for me it IS all about diet. I hope this helps.
A bit abstract and I don’t mean to sound rude as your content is really en point; but I was curious about the movement in the background while you were talking. Something on the door behind you amongst the coats was moving while you were talking at the beginning of the video. I thought it was perhaps a draught causing it but then it stopped. I wasn’t going to say anything but my curiosity had the better of me as I couldn’t explain it? 😣 👀 🤒 🙂
Haha! Now I can’t watch the video without seeing that. My wife has a scarf hanging on the back of the door and just on the floor to the left of the door is a vent. We have a variable speed AC so I bet it was blowing lightly and then harder as needed to cool down the room causing it to wave in the wind! No problem, I actually have OCD so I can understand the desire to fixate on things and then ponder… endlessly. 😂
I’m somehow sorry and happy at the same time. I’m sure you can relate. It’s like it’s a horrible thing to find out that you have. But when you’ve been stuck not knowing what’s going on for so long even a death sentence is welcomed just so you know what’s happening. Not that Lupus is just a death sentence but you get what I’m saying. The only thing worse than knowing… is not knowing. And I spent decades very confused and alone.
Not sure how I got here, but hi Ryan. I’ve listened to one or two of your videos and would love to recommend a natural product to try for your condition that I use for my symptoms which is not Lupus, but it has helped those with Lupus, arthritis, Rheumatoid arthritis, diabetes, sciatica, swollen joints, and the list goes on. There’s just too many to name. I myself, have suffered with cold feet for the past 3 years and these have warmed up after 4 weeks of taking this product. Had a touch of arthritis in my left had, predominantly in my left thumb and that has vastly improved. Was suffering with back spasms in my left mid back. Hardly feel these now. Getting better sleep. Have been suffering with swollen ankles still waiting for this to improve and am hopeful because of what this product has done so far. It has also helped my mum with stomach and bladder issues she was having. She can’t get enough of it. I’m just about to introduce my granddaughter to this same product. It’s called FOL. She has inflammation of the eyes called Uveitis, and it just so happens that she takes Prednisone, Plaquenil, Hydroxychloroquine, and Methotrexate for this condition. I’m not happy with her progress for doctors have been treating her for the past 6 years. She is now 12. Enough is enough. I’m going to be her naturopath. Sorry for the long winded message. Again, the product is called FOL. It is 100% anti-oxidant, anti-inflammatory and anti-microbial. I have a link to the site, if interested in knowing more, plus to purchase.
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Exactly the two always go together. A sickness and a lupus flare, or any surgery’s at 71 years I know what it is all about after almost my entire life, since age 18 suffering with the struggle! Just trust in your self and remember that no one can really understand but yourself what it feels like. Hang in there and God be with you🙏🏻
Thank you! It’s a hard transition to go from a young capable guy to disabled in a matter of years. It’s weighing on me terribly. Glad you’re here to help us through the struggle!
Christ i understand your pain. Im also a young guy diagnosed with a autoimmune condition. I went from being a damn near professional athlete, to being in pain all the time. I can no longer train with weights, its pure suffering.
Totally get it. I train judo and jiujitsu and over the last 2 years my ability to train has gone downhill terribly. Sometimes I can’t even get through the warmups. It’s humiliating, but then again there’s a lot of guys just on the couch eating junk food. They come and train for a week and then bail because it’s too hard. I always want to be like “if you only knew…”
I have started to notice a connection between flares and depression. I’m so glad you mentioned that. I have also started having trouble with nausea and only recently found out that it can be lupus related. So glad I saw this video. Hope you are feeling better.
I have been noticing the same thing, big time! For years, I had no idea that Loupas was even a possibility and my wife and I would go through these horrible boats where every few months I would just tank into a deep, dark depression, and it was a major issue in our marriage, because we couldn’t understand why. It would make her sad and afraid, I could barely make it through because it was so intense. It’s been going on my whole life and now that I have this Loupas situation and I look at the whole picture it makes sense that the lupus could totally be causing the depressive flareups and even my anxiety which I have been struggling with as well. I’m glad you found the video and I’m glad you are enjoying the channel. Hope to chat more in the future!
Totally understand your constant battles with virus and frequent sickness, since my son started to go to kindergarten, he brings him flu, Covid, stomach bugs, infections and of course I was sick often along with him that we had to cancel play dates or changed plans. You are not alone. We are much more vulnerable to sickness,
This has been the worst year of my life relieve to being sick. I’ve been sick for 1/4 of the year so far. That’s so crazy. I keep finding myself wondering how I’m gonna live the rest of my life like this. I’ve been really struggling to work to the point where we’re taking disability now. But I’m sure I’ll get denied for that. It feels like I can’t help from anyone.
I got diagnosed at 29 in march. Started on HDC a day and was a lifesaver until I had COVID. Been two weeks without a voice and coughing my soul out. My lungs and chest are on complete fire. I totally relate to you, man!
Ugh! My son just tested positive for Covid yesterday. I’m terrified. I’ve gotten it the last two years but now im benlysta because my lupus is not getting any better. So… now I have to avoid the dude til we get through this but I know im gonna get it again so I almost just want to get it overwith. The good news is that each time I’ve had Covid, I felt amazing for 2-6 weeks after being sick. I don’t know why, but both the last two years I felt amazing after I finally got better. Then it all came back, but the break was wonderful.
How do you feel on Benlysta? I didn't want to get it because I'm afraid of the side effects. I work in a restaurant so is almost positive that I'll get COVID at any given time. I function on painkillers and Hydroxichloroquine around the clock. But yeah, I feel you on the feeling great. I'm just so not looking forward to the flare comeback 😪
I was only able to be on it for a month and then I got Covid. I’ve been off it since. My labs looked amazing this past week at my appt but I don’t feel any better. Maybe even worse. My doc didn’t out me back on because my labs looked so good and wanted to see if maybe we’re seeing lingering affects of the benlysta and if my labs get bad again then we will go back on it. He also said if I feel really horrible we can start it back up.
@manwithlupus my doctor is still pushing it, but I keep refusing. I was put on Azathioprine to go along with Hydroxichloroquine this last round. I'm on the same boat as you are: labs look great but still feeling bad. If my arthritis doesn't get any better, I guess I'll give it a try. Keep us updated!
God bless you, from an Alaskan woman with Lupus.❤
Thank you!! Hope you’re well.
@@manwithlupus I’m in a good spell this week actually. Just finished my divorce from a narcissist after 20 years, bought a new property a couple days ago and my grown kids are all happy. I can feel the difference in health already and it feels good. My only issue today is… it’s snowing!!! Guess I shouldn’t be too surprised considering where I live. 😂 I hope you are getting some good rest and having a good day.
Just the stress relief alone from leaving a narcissist may really help your condition! Hang in there. I’m glad you’re here.
@@manwithlupus Thank you. Just as I told you things were great the narc ex pulled a fast one- dropped our home selling price by over $110,000 thereby getting my percentage of house profits by a third. Might not be able to finish purchase of my new place. Shaking my head.
Yes!!!! I have an identical situation to yours. Thank you for sharing because you get treated like you're crazy.
Yeah I sure do and it’s hard living with this. I’m struggling terribly right now.
Great channel brother, was just diagnosed this yr, and looking for answers.😢
Glad to help! I’m gonna get back to creating content here soon. I have been really sick and trying to figure out this other condition I have. I’ve been to so many doctors and had so many tests and biopsies and imaging, etc over Tempe last few months. I’m feeling horrible but I need to get back to creating content.
I experience this too with viruses and infections. But as a woman, I also experience this monthly. The hormonal aspect is very obvious but I also relate concerning picking up a bug or developing infection. Miserable.
I guess I never thought about women’s monthly cycles affecting it. That’s interesting! What symptoms do you experience?
When I got Covid for the 2nd time. I screamed for hours. My knee joints felt like they were being blown off! Threw up for hours and lost all ability to control anything going to the toilet. Migraine came and all lasted for 4-6 days. But I’m sick daily, I throw up daily and nauseous daily. So exhausted I can’t move…
Yep, sounds exactly like my experience. Covid this time was so unbearably painful! I feel for you. The first time I didn’t have irregular pain. This year it was a week plus of feeling like I got hit by a truck. I feel for you!
Me too 😢 sending you hugs ❤
My whole family got COVID. One family member took about 10 days to get better. Kids about 4 days. Me, about 6 weeks….
@@manwithlupus❤❤❤
What's crazy for me is I have Lupus and Sjogren's Syndrome, but I haven't been sick in like 5 years (like a head cold, flu, or covid). Although in a flare up I may have a fever for some hours or a day.
I mostly have seizures, trimmers, joint pain, swelling in hands/feet/knees, fatigue, brain fog, slurred speech, slight butterfly rash/arm rash mainly from the sun, losing my grip dropping things, hair loss mild alopecia, trouble breathing affecting my chest, shoulder/wrist pain, brittle nails, chronic cough, dizziness, ear rings, ulcers in my mouth, etc.
Great video...
Thank you! I’m trying to put out content that people can relate to and get talking over. You have a lot of the same symptoms as me. I don’t know if I just have a severe case or if my unknown underlying neurological issues make this more difficult for me, but this disease is debilitating. I just feel so sick and worn out 24/7/365.
I feel you...I have lupus with secondary systemic sclerosis
I have same
@Angiebaby99 I'm also anemic and I take liquid iron
I'm right there with you. Was diagnosed with these two in March. Hang tight, sister!
Yes 100 percent. I absolutely feel the same way.
I’m on the journey rn. My sister was already diagnosed with lupus. I’m obese, pre diabetic, and have high blood pressure. For the past 2 years I have had this immense inflammation in my chest and left arm/leg. It’s horrible, I feel like my body is burning from the inside and it causes me to have panic attacks. I tested positive for ANA 1:160 speckled. ESR is 56, white blood cells high 16,000. No infection, but I get low grade fever/hot flashes and sometimes night sweats. Family has sickle cell… but these symptoms come and go, intensity wise. Some days it’s minimal, others I want to live in bed for weeks. I’m seeing a hematologist to check for any complications, nothing so far about white blood cells. Trying to get bariatric surgery. Next is the rheumatologist cause of the family history of lupus. We will see!
Yes, it does.
Ryan, no need to ever apologize to us, your brother and sister lupus warriors. We KNOW!
Yes, when I have any illness my lupus flares. It’s probably because as the immune system ramps up to fight the illness, the ramping up has caused the lupus antibodies to flare. I have a 4 letter word I now like to use. I won’t say it here but when at home I say it a lot!!!
It sure does hurt when it happens. This year has been horrible for me, I was sick with everything under the Sun. It was like every week it was another infection or bug. And the. The pain and fatigue would hit me like a ton of bricks. Oof.
I so understand this feeling . even with a cold you go into flares and it can last for weeks and months.. things hurt that you wouldn't even thing could hurt .. feel better soon. spring is hear not to hot or cold so I know the weather can cause flare up for me .. love the videos keep them coming plz
I honestly feel like I have been in a constant flare forever. I have never felt better, It’s just Groundhog Day for me.
My daughter in law was just diagnosed with lupus.she is also a diabetic 2, and hypoglycemic. She has a terrible time. I told her years ago that she needed to be tested for Lupus. Her eyes are affected by her diabetes. She has high blood pressure too and her heart beats at too high a rate. I personally can not help her because I no longer know how. I love her, and I just want to say thank you for helping me to understand this Lupus better.
Oh that stinks. That’s too bad. I get it though, I have an undiagnosed Hable condition that is affecting my bone marrow and my bones are calcifying. I applied for disability and recently received a denial so we now have to appeal, but I’m in the same boat. I am struggling terribly. The more I try to work the more physical I am the more I use my brain, the sicker I get. My fatigue is horrendous and all my medication’s mess with my head and it’s hard to stay focused and work. I feel very very stuck.
Hey Ryan, I wanted to thank you for making this channel. I have not been diagnosed with lupus, but I am pretty sure I have it. I have been dealing with flare-ups for the last six years. I have seen five rheumatologists, and they tell me I don’t have an autoimmune disease. When I try to describe my symptoms, they sound made up. I get random pains in my toes, fingers, wrists, etc., and it’s just random. I feel tired, depressed, and I have a rash on both sides of my nose near my cheeks. But I guess my blood work doesn’t indicate that I have lupus. I have four relatives on my mother’s side who have been diagnosed with lupus. After watching this video, I felt that it described 90% of my symptoms. So I wanted to thank you. I know that I am not just making up these symptoms in my head. LOL.
Ugh that’s so hard. I went through years of that myself where nobody would believe me and it was torturous on my mental health. I thought I was crazy and losing my mind and making it all up. Have you done blood testing? Did you have a positive ANA? That’s the first step. But it does sound like you have some of the symptoms.
@@manwithlupus Yeah, it always comes out
Dang. Yeah I have a very non typical presentation of Lupus and it was hard getting a diagnosis. Please be sure to keep us posted on what you find out!
No need to apologize for taking your time to take care of yourself, spoonies understand 💜
Thank you so much!
Yes!!! I live in fear of getting sick
I’ve never had as much trouble as I’ve had this year. I also had the FLU and since filming this video last week I got another stomach bug and a flare. Today is my first day out of the house in a week. Ugh.
I'm also a man with lupus with RA positive, i have never heard about this disease. I have now this disease and I'm searching everyday what actually it is,i feel so nervous and I'm depressed. Now I'm on medication prescribed by my doctor. Everyday i don't feel good and can't do my work with concentration.
Yeah, I totally understand that. My doctors have just told me that I should consider disability and so I am starting that process. It looks like it’s going to be a tough journey but at this point I just can’t hold down regular work. I am so sick so often that I just can’t tell you when I’m gonna be OK and when I’m not. It might be two weeks of laying in bed and then three days of being relatively OK and then back to sick for another couple days then OK for a day or two. There’s just no way I can hold down regular work. It really sucks.
Where r uh frm adnan ? Which hospital uh visiting
Sorry you’re going through this. I know from experience how this feels. However, changing eating habits, exercise and supplements for the gut/others have really helped reduce the pain. I guess at this point we all have to try whatever we can and see what works best for you. Low vitamin D usually comes from GI issues. God bless.
Yeah I’ve spent a few years here trying to find a balance. Trying to figure out what works for me. The best I’ve come up with is the lion diet, martial arts training 2 days per week (keeping it light) and then sleeping better and being on a normal schedule. But I can also be doing all of those things and just get hit like a ton of bricks so it’s not fool proof.
I've heard that masculine lupus its extremely agressive
My doctor told me that on my first appt. He said men account for a very small segment. And white men are even more rare. And the more rare the demographic, the more aggressive it can be. I’m struggling horribly with pain and fatigue. Just horrible. Thank you for watching!!
When I get sick my lupus does flare up it’s terrible.
I agree.
I feel the same way: even the depression is the same as you describe
Those bouts of depression can be so horrible. As a kid I had bouts of depression like that regularly as well, it was not fun. As I got older I had less depression and more anxiety. Anxiety is also so very overwhelming. It makes me feel like I need to peel my skin off to escape. I don’t think that’s going to work very well. 😂
I just got diagnosed with lupus. I'm so drained and wake up with headaches everyday. I'm very confused on why I feel so bad. It's awf😢
Yeah man, it’s really shocking when it finally gets to the tipping point and it gets bad. Most Lupus patients I know tend to say it’s tough; but seem to live pretty normal lives. For whatever reason I can’t get ahead of mine. I’ve been completely debilitated for a couple years now. Up to that point it was just frustrating and made life hard and confusing. But now it’s like I can’t even hold down work. Im sick every single day. If it’s not one thing then it’s 5 others. Pain, fatigue, confusion, nausea, rashes, headaches, migraines, the list goes on and on and on. Hope they can get you on some medicine that works for you and helps! The hydroxychloroquine has not helped me at all so im going to start benlysta soon. We will see how that goes.
I can relate, even though I don’t suffer from lupus. Whenever I’m sick or stressed out both my RA and my diabetes take control of my body, especially the diabetes. I noticed that my numbers are extremely high thus also triggers my RA to flare up! It’s like a lose lose battle whenever I get sick. And for months, I noticed that I wasn’t having much flareup pain, but stiffness but my diabetes was really out of control. Come to know, I was admitted in the hospital for six days and was diagnosed with having colitis. I believe that anyone suffering from autoimmune diseases whenever we get any other sickness, it does trigger our body to go overdrive, affecting us differently than other people that don’t have the autoimmune diseases.
Ugh. Thats tough. Diabetes can be a very tough condition too. I’m sorry you have to deal with all of that. I hope you find some relief at some point. I know I sure would like to find some.
Totally understand
How are you feeling now? Do these things overlap all the time?
They do overlap constantly. It makes it very hard to discern what’s what and what’s going on. I often don’t know if I’m having just a flare or if I have the flu. And having as many fevers as I do makes it even more confusing. I’ve been having fevers 3-4 days/week for months and months.
I have times when I don't know if it is the fibro or something else. Most of the time I just think it's the fibro and don't look into anything else . Easier to just say fibro.
How high are the fevers?
@@bethjeske1111 I was recently diagnosed with Fibro as well. Still looking into my neurological issues. It’s very confusing having so many things going on. It’s hard to know what’s what and what’s helping or not helping. It’s all very confusing and difficult.
@@bethjeske1111 fevers are usually around 100. Nothing huge, but more of a “what’s going on with me I don’t feel right” and take my temp and yep, it’s 99.9 or something.
I believe I have lupus, I thought it was fibromyalgia but have since started to develop rashes when going out in the sun. I hope things improve for you.
Thanks. I hope things get sorted out for you. I have both and I have an unknown as well. I’ve been really sick the last couple weeks. Just nauseated almost all day every day. Pains horrible too. Just struggling. Hang in there my friend!
@@manwithlupus I am still in an early phase and only just starting to realise how debilitating this is, I have subbed and will join you on this journey, I hope it makes your day a little better. Stay strong.
Glad you’re here. My goal is to have a solid community of people that we can relate with each other and share our stories and solutions. Very happy you’re gonna be part of the community.
I have lupus and yes it is worse when I’m sick but sometimes it flares out of the blue.😊
Ugh. It sure is a difficult disease. The worst part is just never knowing what to expect.
I've lived with lupus and fibromyalgia for a lot of years.
At the beginning of covid, I found websites by esteemed medical people speaking on Vitamin D.
As of now, we can take up to 10,000 IU per day. I was born without a full antibody system, so I've lived with sickness for my whole life. I've been on Vitamin D since January, 2020. I haven't been sick once since I started on it.
Hopefully this information will assist you.
I’ll look into it. I watched a Rogan podcast with a woman who was all about vitamin D.
Dr berg has a video on autoimmune and vitamin D
All of this sounds like me all day. My aunt died from lupus complications I believe. I haven't gotten diagnosed but my brother I feel this deeply. I don't even know if I'll be able to take care of myself due to lack of energy.
Oh man I hear you there. My fatigue has been really difficult. I wake up and it’s not only painful, but the fatigue just makes me feel like I want to lay down right now.
Absolutely. A normal cold or sinus infection makes lupus flare out of control and the body pain cranks up to 1000. It’s horrible. And yes, the deep depression comes in as well. It’s absolutely terrible. I’m actually noticing that about 4 days into the flare depression comes. I have neuropsychiatric lupus with what looks like dementia. I can’t think straight, I can’t speak well because I forget words (including simple, everyday objects like shoes, fridge, etc.) and my memory goes to sh*t.
Oh you’re just the person I need to talk to! Npsle is something I’m worried about. I have horrible memory issues and I can’t get words out. They’re in my mind but I can’t get them to come out of my mouth. I have been having horrible issues with that. Sitting in a daze just like my brain will not work. I have a suspicion of neuro involvement with my lupus but nobody will seem to address it. How do they diagnose npsle? What symptoms do you have that are specific to it? How could I tell if my suspicions are correct?
I was diagnosed in 2018 with sle and nephritis lupus had the same thing with a stomach flu in December it’s still going on now and now it’s march i notice I’m getting my flare ups around this time
Ugh that stinks. So many people are having flares right now. It’s strange. Hang in there, there light at the end of the tunnel.
Yes I do
You can have both nephritis and CNS lupus. Lupus tends to act up randomly affecting any organ in your body. There’s definitely a connection to your brain, you’re experiencing physical trauma internally, of course it’s going to affect you mentally and make the flare even worse
Yes I have a sneaking suspicion that my brain is involved here somehow. I have that other condition that nobody can diagnose and so I thought maybe it was that. But a big part of me feels that my Lupus is affecting my nervous system. I was cleared by a neurologist though.
I don’t know if you the same way but I can be ok but 5 min later I swear I can feel the change in my body starting top working down my body with the start of a flare. Of course fatigue, pain and brain fog? Yes when I had Covid I went into a flare making it last for 6 weeks.
1000%. To me, it almost feels like an anxiety panic attack. I get warm and my stomach kind of churns and then I get really anxious, I can’t think straight and lose my place and lose words and then I usually get either a fever, nausea/vomit or really excessive pains everywhere. And to me this seems to happen anytime I get myself up and doing things for more than about 2-3 hours. After that point I start to get this stuff going on. It’s been the biggest reason I struggle to work. Just a couple hours of ant activity and I get riddled with pain and sick.
Hello Ryan, perhaps try a low tyramine food diet and or a low histamine diet. This has helped me tremendously.
Thanks for the info! I’ll put them on the list and start to look into them. I’m right in the middle of possibly making some med changes and stuff and I hate to make too many changes at once onky because it’s then hard to know what helped and what didn’t. Appreciate you suggesting this and I’ll take a look for sure!
My grandson had a horrible stomach bug, he’s only 18 months old so I was changing him every 15-20 minutes due to diarrhea and vomiting. The day after I took him home I had a severe case of polymyositis. I hurt in my upper arms and thighs, I was so weak I couldn’t get out of bed. I had to take methyprednisolone to manage my symptoms. I’m sure I was exposed to nasty viruses from a toddler that triggered my lupus flare, so yes, exposure can cause severe lupus symptoms.
Wow! Those little guys sure are full of all kinds of bugs and stuff. My kiddo is 6yo and just finished kindergarten and I’ve been sick for months with everything under the Sun. Hope you’re feeling better!!
Hey Ryan, just wondering what treatments your doctors are giving you? For lupus or the symptoms that go with it? How often are you getting your blood tested and how often you consult with your physicians?
So I see the rheumatologist once every 3 months. I mostly see his assistants which sucks because the appts with him directly are much more thorough and I can tell he really knows what he’s talking about. My case has been so hard because no matter what we do or how my labs look I’m still in pain. It could be my other bone/bone marrow condition that no one is able to diagnose that could be part of the problem. For my Lupus I am simply on hydroxychloroquine at this time. I got Covid so they took me off benlysta and then my labs had looked so good a few months later they decided not to treat me with it unless my labs look bad. Well I just got those done and my numbers are starting to look bad again so we will see what they say at my next appt. My biggest issues are fatigue and joint pain. It never goes away. I’m just living at 50%. I do have some opioid pain medication for the joint pain which brings it down to a level that’s bearable. I’m still pretty limited. I take gabapentin at night for nerve pain, my shoulders and hips just ache so bad at night and I get a lot of numbness and tingling so gabapentin helps. I take ambien to help me sleep, the pain wakes me up. But that’s about it.
i have all the same symptoms with SLE
Ugh. It’s so hard to live with. Hope you’re having a good day today!
I noticed that you have stairs. You know to be careful, as I do but I fell anyway and tore part of the quad ligament.
Oh no, that’s terrible. I hope you didn’t hurt yourself too bad! We don’t use the stairs too often, those are just some spare rooms up there.
Thank u for sharing your video regarding ur experiences. My sister has Lupus and doesn't have much issues.
I have Fibro but i have a suspicion i may have RA or some form of Lupus. I am far worse off than my sis.
I am suffering 24/7 with severe pain and severe fatigue, weakness, anything ending in ITIS i seem to get.
Docs love to tell me to just lose weight, work out, go walk..etc. They have no clue what it's like living in this
body ! Anyway,...I can;t get a doc referral to see a ruemotologist cause my ANA shows nothing. Blood tests
sometimes doesn't show Lupus. I dunno if i'm misdiagnosed or not ? 😏 Thankx again Cheers 👍
Well I’m no expert on diagnosis, especially if you don’t have a positive ANA test. I certainly have lupus but I also have an unknown condition. We thought it may be neurological but it’s not. We’re not sure. It’s really hard because I don’t know which symptoms are from the lupus and which are from this unknown. Diagnosis is a very hard thing. I hope you can get to see someone soon!
Lyme? Alot of people are diagnosed with autoimmune and lyme disease is an underlying cause. Just a thought
Yep; going to get tests done for that, mold and heavy metals next.
Yes, always, if I pick up something my Lupus goes into overdrive, always has, when i get sick I get really sick. Since having Covid it is much worse and I seem to have some kind of long covid. Where my RA turned from negative to positive and I have bouts of nausea and vertigo that affects my ability to function. I cannot drive and even standing up is a challenge. It is winter in South Africa at the moment and I have already had 'flu 3 times. I work with special needs kids and i have had to cut down my contact with them and when I do go into my Centre, I am wearing a mask, sanitising and having a shower as soon as I get home, all in an effort not to get 'flu, tummy bugs or Covid again. So I know flares are usually a symptom of something else beginning and Covid has had a huge impact. I hope you stay healthy during the warmer months in your area.
Ugh that sounds like it’s not very fun. I’m sorry you’ve been so sick. This year has been tough for me too. I’ve had like half a dozen sicknesses. I don’t usually get sick more than once. But my body seems to be getting more and more sick lately. Not sure what the future holds but I’ll be here doing videos as often as I can.
@@manwithlupus thank you, sending you lots of healing thoughts.
I do not have an appetite and IBS-constipation.... nausea do you get the same? Depression is a big problem for years. What helps?
Depression and horrible horrible anxiety. Like almost had to get some major help so I didn’t delete myself. I’m having flu-like symptoms every day. Throwing up multiple days/week and sometimes it’s all day long. I’ve also suffered horribly from constipation, but I am on opiate medications so take that for what it is. Depression and OCD are regular things for me. I’m not the best guy to ask because I’m just new to all of this. But what I have been doing I training jiujitsu, find a good gym and they’ll let you modify it to fit your needs. It’s kept me stretching, moving, feeling accomplished, learning to take care of myself and makes me feel like a man again. Now that might not be your thing, but you get the idea. For me, jiujitsu just keeps me moving and progressing with my body and it’s totally changed my life. I never did any sports ever, hard to play sports when your bullies do… and nobody believes you. But find something you have always wanted to learn. And go sign up for that class and don’t stop. Best thing I’ve done so far.
Yes, when i get flu- flare
I can totally relate. I have been so sick for 2 years especially after the covid shots.. utis, flus, sinus infection flus (3) last winter and I have pyoderma gangrenosum too which are sores with debilitating pain. Life is especially tough hard when you get such with lupus. Covid was horrendous and sometimes it is hard to tell what is from lupus amd what is from the other issues. I also had shingles etc…. Attitude is humongous. I know how you feel but it will be a very different road if you do not have gratitude. I a, speaking from my own experience. I wish you good health and peace. I have all of your symptoms right now with the pyoderma wounds. Feel better
Have you talked to the dr about an anti depressant?
Oh yes. I have a psychiatrist and therapist and Neuro doctor all in the mix. I know that gratitude is necessary, I’m just so exhausted. I don’t even remember what it would feel like to be me again. And it seems there is no end in sight. Every day is like Groundhog Day over and over. I’m preaching to the choir, you understand better than I do. So many years and not an end in sight. It can just be difficult and I know other people feel this way so it’s important for me to be authentic. In the end all we can do is one day at a time because we really have no other choice.
I'm 74, I've been horribly tired for 8 months. Just got diagnosed with Lupus. My oldest daughter has it. I'm so scared. I refuse to take steroids.
I can’t take steroids or I get sulcldal and go off the deep end very quick. The worst things for me are the joint pain and lately the fatigue. Every single joint in my body hurts. And hurts BAD. I’m sorry you’re diagnosed with this, but at least you know what it is. If you’ve made it to 74 and don’t have major organ involvement you might be pretty fortunate and just kind of have pain and fatigue but no life threatening issues. That’s a blessing in disguise for me. I’m in way more pain and have very seriously debilitating Lupus symptoms, much more than most. But I do not have major organ involvement so that is a good thing. I also have a second unknown condition that nobody can figure out. I’ve just been referred to a geneticist and the undiagnosed disease center. I’m terrified too. Thanks for being here!
When you have a flare, have you gotten your vitamin D level checked? I have lupus as well, and if my vitamin D level is low, I can become depressed and I can be more prone to contracting a bug that can trigger a lupus flare. That's what I have noticed
I have. My levels have been fine. I haven’t ever correlated that with mine.
I feel depressed when lupus flares and colds come on.
Its not nice a , I feel for you, it happens to me too
I just hope I can stop catching everything under the sun. I have a 5yo in kindergarten so I’m sure we gets tons of germs coming home.
I also experienced a lit of pain etc with covid and other viruses. The extreme emotional symptoms sound like herxheimer reaction from detox, which would make sense, bc your body will actually use a virus as an opportunity to detox. Another possibility is that you may have viruses etc. In the brain (that become m9re active when you are ill) like has been found in MS
I was tested for MS. They found some white line lesions but nothing too abnormal. Interesting!
@@manwithlupus I just learned today that when people lose visceral fat (tied to a lot of disease bc of the direct link to impaired bloodflow), they apparently have a substantial decrease in lesions also
I can relate
Im so sorry you're going through this. I had covid and was fine then one day i woke up and really couldn't walk.my whole body hurt it was terrible .i havent been fully diagnosed yet.i find out in 2 days however i saw my test results and its pointing to me having Lupus. I do get nauseated however to fight it,I use Altoids(red can) ,Free Brothers bitters old fashioned and or mint,lemon,cucumber and ginger water (you must make this yourself dont trust the stores. )Try these to see if they help.❤❤❤❤
Thank you!! It sure stinks but all I can do is plug away one day at a time. What did your results say??
Story of my life😢
I’m sorry. It’s so hard.
HI RYAN, I AM NEW TO ALL THIS, (MY OLD DOC, TESTED ME FOR ANA, IN 2015, AND I WAS POSITIVE, THE JERK N NEVER TOLD ME EVEN THOUGH EVEN THEN I HAD MANY SYMPTOMS 😮. I lIVE ACROSS THE WORLD FROM YOU. MY MUSCLES, STARTED PLAYING UP GOSH, LONG TIME NOW TO THE POINT, I CAN HARDLY WALK, I CAN'T STAND UP, I HAVE THOSE TERRIBLE SORES IN MY MOUTH, ( RIGHT NOW IT'S NEARLY 3A.M. I CAN'T SLEEP. I HAVE THIS TERRIBLE NAUSEA, THE PAIN IS SO BAD. FORGOT TO SAY I TESTED POSITIVE, A FEW MONTHS BACK, PLUS MCTD, MY GUESS IS POLYMYOSITIS? THINKING LIKE EVERYWHERE IN THE WORLD NOW, THE WAITING TO SEE SOMEONE, SPECIALIST. I HAVE HYPOKALEMIA. I ALSO, HAVE SOMETHING THING WRONG WITH MY ADRENAL GLANDS, I HAVE A TUMOUR. SO THAT IS MAKING THINGS WORSE. HMMM, I'VE SAID QUITE A LOT, BUT DID WANT TO SAY. I AM GETTING VERY WORRIED ABOUT MY MIND, I CAN'T REMEMBER WHAT I'VE JUST DONE, VERY DEPRESSED, CAN'T REMEMBER NAMES OF STREETS ETC. I HAVE BEEN ABANDONED BY MY FAMILY, I CAN HONESTLY SAY, ACCEPT FOR SUPPORT WORKER'S, I AM TOTALLY ALONE IN THIS WORLD😭😭😭 I HOPE SOMEONE CAN MESSAGE ME, MY COUNTRY IS SO SMALL THERE ISN'T EVEN A SUPPORT GROUP. TAKE CARE OF YOURSELF J
Oh I feel for you. It sounds like you definitely have some lupus symptoms as well as some non lupus stuff going on. I have the same issue. My doctors know I have lupus and are trying to treat it, however my body isn’t responding so we’re changing medications. But beyond that, I have an unknown condition and it’s wreaking havoc on my system. I’m so sick all the time, and the pain is in every single joint. My hands and feet are horrible. I often cannot stand up in the morning for a while. And when I do I limp terribly on both feet because they burn. My hands won’t close for hours in the morning. The pain is terrible. My hips, back, shoulders and neck are always just a deep ache with acute pain upon movement. And yes, the memory issues. It’s horrible. I often walk into a room and forget why I’m there. It’s impossible to work because I just lose track and wonder off. And then of course I still have the fevers, the fatigues which is just unbearable, the Reynauds and everything else. It’s terribly exhausting. I’m here with you my friend. Keep watching and let me know if there’s anything specific topic you’d like me to do a video about and if it seems like it would be a good fit, I’ll do it.
@@manwithlupus THANKS RYAN, I'M SORRY, 😔 YOU'RE NOT DOING WELL WITH MEDS. ( IT'S LIKE A DOUBLE EDGE SWORD) I'VE HEARD THEY CAN MAKE YOU FEEL SO SICK, IT DOESN'T SEEM FAIR. WE SEEM TO BE VERY SIMILAR, WITH SYMPTOMS. I CAN'T GET OUT OF BED, I'M LEFT HANDED, MY LEFT ARM. IS THE ONLY PART OF ME, THAT FUNCTIONS BETTER 🤔 THAN REST, SOMETIMES, I'M TOTALLY PARALYSED, SOMETIMES, MY RIGHT SIDE, IS SO BAD 😱, I HAVE TO TRY AND MINDS MASSAGE IT SO I CAN GET OUT OF BED. ( HAVE YOU ASKED YOUR SPECIALIST, OR G.P. NOT SURE IF THAT'S WHAT YOU CALL THE PERSON, YOU GO AND SEE, FOR GENERAL CARE, PRESCRIPTIONS ETC. ( ANYHOW DID THEY TEST HOMEOSTASIS SPECKLED, ITS UNDER THE ANA TEST. IF NOT,, AS IT SOUND'S LIKE YOU HAVE EXTRA WHAT I HAVE MINE IS POLYMYOSITIS, WHICH AFFECTS THE MUSCLES VERY BADLY, ( SOUND'S TO ME YOUR PAIN IS MORE THAN JOINTS!!??. THERE'S SCLERODERMA ( THAT AFFECTS THE SKIN MAINLY, MAKING SKIN VERY TIGHT. AND SJOGRENS SYNDROME, (THAT CAUSES DRY EYES AND MOUTH, ALL OF THESE CONDITIONS, CAN BE IN CONJUNCTION WITH SLE. I REMEMBER YOU SAYING ABOUT YOUR TERRIBLE DRY MOUTH, HMMM. I'M LUCKY IN A WAY, I HAVE A LITTLE AMOUNT OF MEDICAL TRAINING, I WONDER IF YOUR ✋ HANDS ARE ALSO A MUSCULAR ISSUE, MINE ARE SIMULAR TO YOURS, BUT MINE CONTRACT ALL THE TIME, I CAN'T GET MEDS, OUT OF LITTLE PACKETS, I'VE RUINED MY CARPET, FROM SPILLING DRINKS, TEA, SND YES I HAVE ONE COFFEE A DAY, NOT SURE IF YOUR MEANT TO..
LAST NIGHT I HAD A TERRIBLE FALL, I WAS SITING IN MY .L.B LENT DOWN TO THE SIDE OF ME, BAM I WENT FLYING, LANDED ON MY KNEE'S, MY LEFT WRIST AND HIP, I WAS SCREAMING WITH THE PAIN, MY KNEE'S FELT LIKE I'D LANDED ON GLASS, O WOW, 😲 THEN I CAN'T GET UP, THERE IS NOTHING, NO STRENGTH WHAT SO EVER, TOOK ABOUT HALF HOUR TO GET UP, SO THIS YEAR NOW, IT'S SLIGHTLY MORE THAN A BIG FALL A MONTH. HAS ANYONE TALKED ABOUT DYSPHAGIA, I HAVE TWO ORAL, WHICH IS SERVER, AND LOWER DOWN, FOUND IN 2000, BY MY AROTIC ARCH. I CHOCK ALL THE TIME, SOZ THIS LONG, I HAVE LUPUS MOUTH, OT NICE. YOU ARE HELPING ME ALOT, DON'T FEEL SO ALONE. LET ME KNOW WHAT U THINK OF THOSE OTHER CONDITIONS. THANK YOU J
Why can't you take vitamin C ?
Anytime I take it do anything to “boost” my immune system I get more sick. I’ve been told it’s likely because my lupus has been in an almost constant flare and remember lupus is your own immune system attacking your own body. So the stronger my immune system the more it’s attacking myself. At this point I’m afraid to ingest anything. If I starve myself I feel better than any other time but of course you can’t do that. It’s a never ending cycle of hell. I’m sick almost every day and I’m in terrible pain every day, all day and night. I can’t get a break or reprieve.
@@manwithlupus I am the same it's hard. I relate 100% . I stay in a flare. And I feel like a vampire the sun and the heat is my worst enemy. When I used to enjoy it so much the sun was therapy for me. Even sitting in the shade I get rashes all over my face. That hardly ever go away. I love to garden and I'm finding that's becoming almost impossible. I tried to do very early morning and late evening. But the heat is really getting to me. I don't eat a whole lot either. I will go 16 to 24 hours at times without eating. The vitamin C Burns my stomach really bad.
Ugh that stinks. I love to garden too. I get the struggle. One thing you could consider, which I did, was I got a tower garden (or you could build one) and garden inside. I didn’t think I would like it but I totally enjoy it now. Just an idea for you!
There may be a gut-brain connection. Are you on a special diet?
I am not currently on a special diet however I’m trying to get back into the carnivore/lion diet. I was on that diet for about 6 weeks back in December and that was the first diet that I’ve ever tried which I noticed a difference. I should have stayed on it because now I’m struggling to get back on it. I’m having horrible sugar cravings. My family freaked out about the carnivore diet and said I was doing damage to myself and it freaked me out and I gave up. I shouldn’t have. I immediately noticed more inflammation and pain. I keep trying and I will keep trying to get back on it. I’ve struggled with non-typical eating disorders too so diets are especially hard for me.
I was on carnivore diet also for over 3 months. I noticed a lot of improvement with my inflammation also. I was 125 lbs and lost 25 lbs. I could not keep weight on. That was my problem but there was a lot of positive outcomes with this diet for me. I not totally sure it's why I lost the weight. I went off the carnivore diet for awhile but my body kept craving it. Putting all that other stuff back in my body affected my taste buds in a bad way. Now it's just confusing for me.
@@manwithlupus Hello, your video popped up on my RUclips feed because I have been watching a channel on how a doctor healed her Lupus through diet. I have an autoimmune disease also, and I recently healed all of my pain and some of my inflammation with the Medical Medium celery juice protocol for 30 days. No more debilitating back pain, frozen shoulder, brain fog, chronic fatigue, depression, etc. However, since I have inflammation in my intestines, the celery juice irritated it a bit too much and I had to stop for 7 days and give my intestines a break. I kept searching for answers on how to get rid of inflammation. I did find that Keto/carnivore was a double edged sword. It works somewhat because you are cutting out all of the other inflammatory foods- gluten/wheat, GMO and processed foods, and carcinogenic oils etc. but my situation was advanced and meat, eggs, and dairy were the one of the primary causes of my inflammation! Who would have thought. Unfortunately, this leaves fresh fruits and vegetables for my situation right now. I'm following the protocol from that doctor I mentioned, Brooke Goldner and her book is called Goodbye Lupus. When I heal all of my inflammation I will be able to eat chicken and salmon again and be back on the protocol in the Medical Medium book "Thyroid Healing", but until then I found that the only thing to jump start my body and regenerate my cells for healing is drastic measures with Kale and spinach smoothies with a bit of fruit, and then I'll eventually be able to digest raw foods again and eat salads for dinner, and then as I said can re-introduce a bit of fish and chicken. Red meat is an inflammatory when your immune system is compromised, as your thyroid is not working with your nervous system to communicate with your organs to process them. For MANY reasons that you can research yourself, I found that for me it IS all about diet. I hope this helps.
Thanks so much for all of this info! I’m gonna do some googling this weekend based on your comment. Hope you are well.
A bit abstract and I don’t mean to sound rude as your content is really en point; but I was curious about the movement in the background while you were talking. Something on the door behind you amongst the coats was moving while you were talking at the beginning of the video. I thought it was perhaps a draught causing it but then it stopped. I wasn’t going to say anything but my curiosity had the better of me as I couldn’t explain it? 😣 👀 🤒 🙂
Haha! Now I can’t watch the video without seeing that. My wife has a scarf hanging on the back of the door and just on the floor to the left of the door is a vent. We have a variable speed AC so I bet it was blowing lightly and then harder as needed to cool down the room causing it to wave in the wind! No problem, I actually have OCD so I can understand the desire to fixate on things and then ponder… endlessly. 😂
@@manwithlupus Ah, that explains it then 👍
Try magnesium it might help u
I do take magnesium regularly!
Too much into. Sorry and it’s not “ my lupus”, don’t owe it. It’s the lupus.
Omg you are describing me.
I’m somehow sorry and happy at the same time. I’m sure you can relate. It’s like it’s a horrible thing to find out that you have. But when you’ve been stuck not knowing what’s going on for so long even a death sentence is welcomed just so you know what’s happening. Not that Lupus is just a death sentence but you get what I’m saying. The only thing worse than knowing… is not knowing. And I spent decades very confused and alone.
Not sure how I got here, but hi Ryan. I’ve listened to one or two of your videos and would love to recommend a natural product to try for your condition that I use for my symptoms which is not Lupus, but it has helped those with Lupus, arthritis, Rheumatoid arthritis, diabetes, sciatica, swollen joints, and the list goes on. There’s just too many to name.
I myself, have suffered with cold feet for the past 3 years and these have warmed up after 4 weeks of taking this product. Had a touch of arthritis in my left had, predominantly in my left thumb and that has vastly improved. Was suffering with back spasms in my left mid back. Hardly feel these now. Getting better sleep. Have been suffering with swollen ankles still waiting for this to improve and am hopeful because of what this product has done so far. It has also helped my mum with stomach and bladder issues she was having. She can’t get enough of it.
I’m just about to introduce my granddaughter to this same product. It’s called FOL. She has inflammation of the eyes called Uveitis, and it just so happens that she takes Prednisone, Plaquenil, Hydroxychloroquine, and Methotrexate for this condition. I’m not happy with her progress for doctors have been treating her for the past 6 years. She is now 12. Enough is enough. I’m going to be her naturopath.
Sorry for the long winded message.
Again, the product is called FOL. It is 100% anti-oxidant, anti-inflammatory and anti-microbial. I have a link to the site, if interested in knowing more, plus to purchase.
Hey! Thank you for the info. If you have a good link drop it below so followers can check it out!