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HI RYAN ARE YOU SICK. SENT MESSAGE OVER TWO WEEKS AGO. I HOPE YOU ARE WELL ME, TOTALLY ON MY OWN, VERY ILL. DON'T KNOW WHAT TO DO, I CAN'T WAKE UP 10, 12, 15 HOURS, NOT NORMAL. HOPE TO HEAR FROM YOU J
BANG!!! You hit the nail right on the head. All of that stuff is so expensive and none of them are the silver bullet! It just causes more stress to think of buying them.
THANK YOU. I get so tired of hearing and seeing about homeopathic and natural remedies. I see ads and people post about "curing" lupus and it's like, hah if your lupus is "cured" then you didn't have lupus to begin with. I agree with literally everything you said in this video. Thank you for making these videos, I truly hope that your situation improves health wise and financially, and I'll keep watching your videos. In fact next time one of my friends mentions natural remedies I might just have to show them this.
People also need to understand that lupus & autoimmune conditions affect different people in different ways, what may ease symptoms for 1 person might not work for others.
Those of us with chronic serious conditions are fortunate to have simply the necessities in life Those people who have no idea what all areas in our lives are impacted by lupus should try even for one day to imagine walking in our foot shoes. Yes everything you say is right on !
Thanks for taking the time to make these videos. I am a male in my 30's, started developing raynauds a couple years ago, and was hit with some serious hand joint pain / swelling late last year. Lead me to my PCP, which lead me to the rheum. High ANA, low wbc, low c3/c4, but no specific antibodies. I was put under UCTD with leaning towards Lupus, but I actually meet the criteria for Lupus. I was terrified of having scleroderma, and while I do not want Lupus, I know it could be much worse. My grandmother had Lupus and died from kidney involvement - but drugs/treatments have came a long way since then. I turned my diet around this year after my joint pain started, and it has resolved my inflammation and joint pain about 95%. I was advised to start hydroxychloroquine, but it honestly terrifies me. I think the scariest part is that I am in my early 30's, is it realistic that I can stay on that medication for the remainder of my life without adverse effects. My eGFR has been slowly declining, getting into the 80's/70's, so I am off to see a kidney specialist soon. I have been down the rabbit hole for alternative medicine. TA1 (peptide) has had a positive effect on my WBC, and I will check to see if it has done anything with the other bloodwork later this month. NAC is something my naturopath doctor had recommended, but it has some true studies behind it in relation to Lupus (showing improvement in all organs and blood work) - so I plan to stay on that long term.
Alternative medicines are so hard to know what’s right or not. I know people who have had luck with their diets and some natural remedies and they end up living king healthy lives! So I hope that works for you. I cannot get my lupus under control. I’ve been on hydroxychloroquine for almost a year and my lupus labs were worse than ever. They moved me up to benlysta recently. But we found I have another very rare and bad condition which is likely complicating all of this for me. Keep us posted on your journey!
I’ve gone down this rabbit hole too, as well as my adult DD who also has AI Dx. Between us we’ve spent thousands $$ on appts, supplements , tests for natural medicine. Overall, these attempts have helped me improve nutrient deficiencies, aided in digestion, helped me identify and refine good/bad foods specific to my body (like another commenter noted we’re all unique), and also clarify food allergies. I learned how to eat, rest, and digest in a way to aid my body. Now a few years since all my “natural” health care endeavors, all other AI Dx symptoms problems still exist, but I do feel better. What I can say, like any industry, there will always be someone willing to take your money if you’re willing to spend it. Not all providers are equal. I got taken advantage of because I was so damned brain impaired until a sweet N.D. saw my situation and gave me straight talk about what I should stop taking and trash. I have no regrets about going this route, as I understand what these methods may or may not help with. I learned a lot and made positive life changes which, while those changes aren’t an AI Dx cure, I will always be better off for having gone down the natural medicine rabbit hole. ❤
Great info, thanks for sharing! Yeah I’ve found some natural stuff that has helped. My biggest problem is that everyone promises the world and 95% of them have snake oil (at least to me). It’s like I find things I want to try and then just stall out and don’t do it because I’ve been burnt SO many times and I don’t know what to believe. I don’t know which way to turn or go. Now my last set of labs have slightly improved so they now changed their minds and don’t want to treat me with benlysta and want me to just stay on hydroxychloroquine. That’s all fine and good except, like usual, I don’t feel any better. I don’t feel slightly better at all. I can’t work, I can hardly hold it together and they’re just like “you’re doing good”. I don’t understand what to do. This is what always happens to me. The doctors say “well you’re better” and I don’t feel better at all. And then I’m left with nothing. No solution. Sick as hell almost every day. It’s like how am I going to live the rest of my life like this? It all feels so darn hopeless and like no doctor is ever going to help me. Im glad my numbers came down a bit but I was a very slight improvement in only a couple areas. My dsDNA is still up at 360. It’s like what the hell am I gonna do? Ugh. I know one thing. Im gonna keep building this channel up because I’m really liking this new community of people we are staging to build!
Best thing for lupus that does work is keep stress low, sleep well and stay out of the hot sun. Whenever you feel stress creeping up you have to just walk away from it. If you don’t sleep well call in sick at work don’t try to push through. These will definitely not cure lupus but will make your flares less severe and less often than what would have been. Of course also follow whatever medicines your dr prescribed also.
Yes I agree. And I also notice that it’s a cycle. So not sleeping causes more pain and that causes me to be cranky. Then when I try to sleep next I’m worked up and in pain and can’t sleep again. It’s all a very difficult struggle.
@@manwithlupus HI RYAN, HOW ARE YOU DOING I HAVE A LOT ON. JUST WANTED TO CHECK IN. I'M GONA B, MONTHS BEFORE I SEE ANYONE AT HOSPITAL. I HAD ENOUGH, MY G.P. IS NOT FIGHTING FOR ME. MY MOUTH IS A TOTAL MESS. THE SORES ARE HORRENDOUS. I CAN'T EAT ANYMORE. I CAN'T GET OUT OF BED. I'LL LET YOU KNOW WHY THE HOSPITAL, ARE MAKING ME WAIT. DID YOU LOOK INTO, MCTD, CAUSE OF YOUR HAND'S ✋ CHEERS J
I had this exact conversation with a new friend last night. Come to think of it I have this conversation with someone at least once a month. For me the only "homeopathic" treatment that has done any significant good was switching to an all plant based diet. I find that the high fiber and high plant based protein does help with inflammation and joint swelling. I also do intermittent fasting and I've been able to maintain a 6/18 schedule for more then a year. I've gone from 360 pounds to 215 and have been stable at that weight for a few months now. I'm not claiming that I'm only doing these things and it's working for my condition because I'm also on a boat load of pharmaceuticals too. The main thing I've learned is when a homeopathic treatment is found to be effective they start calling it medicine and someone patents it. I mean there is a reason that autoimmune disease smells like menthol and Voltaren and it's because it works but I'll still use some sandalwood oil because it smells better. Crunchy granola is great on yogurt but doesn't make a good platform for medicine unless it's part of a sensible diet. What I have learned is that regardless of meds the cornerstones of health are a good diet, restful sleep, and movement. as always though, I love the content and I'm so glad you're making videos. I think you have a good message and people need to hear it. I know how hard it can be to just get through the day and I'm glad you have chosen to spend your good spoons on sharing your story.
Congrats on the weight loss that is huge! I was once 250 lbs and I’m now down to 180 and have held my weight for years. I achieved that with strict diet and exercise only. The only diet I have found that has helped me has been the lion diet. It’s controversial but I was on it for a while and I felt a difference. But my family started saying it wasn’t healthy and so I stopped it. But now that I’m off of it, I feel crappier again. I agree. Good sleep, good diet. Good exercise is the cornerstone. But it sure is hard to do when your hands and feet barely work and you’re throwing up all the time! Thanks for watching. Glad you’re here.
Good for you, but homepathic is not food. It's just eating natural food source. UNTIL I couldn't eat, that's all I ate. Didn't help me at all ❤ glad helping you
@@jasanders5877 you're right, I used the wrong term. I should have framed it as a "Home remedy". I hope I did get across the message that homeopathy doesn't work as treatment for autoimmune disease in my opinion. Although I do strongly feel that a meat free diet does reduce inflammation based completely on my own experience. I know that there are a lot of people who are gluten sensitive so going meat free can be difficult without wheat but luckily I do just fine with it. what stopped you from eating if you don't mind me asking?
HI DO YOU KNOW WHAT'S GOING ON? IS RYAN SICK!? I SENT MESSAGE FEW WEEKS AGO, DIDN'T HEAR BAÇK. JUST SENT A MESSAGE, IT SAID CURRENTLY OUT OF SERVICE. HOW ARE YOU DOING
Hey, hope you well. Do you know what's wrong with Ryan? I'm totally alone, WITH no SUPPORT. Otherside of the World 🌎. I messaged Ryan, while ago, and said site unavailable. CAN you let me know if he's ok ❤j❤
Totally agree! I can’t even get my insurance to cover 5 pills for pain after knee surgery. I do take high dose Omega 3. But it is expensive. It’s very helpful with the pain in my joints, but not covered.
My insurance did not cover my pain medications for two years. I kept getting looks like I’m trying to be sneaky and get meds. I hate this disease. I hate that we look normal but are very sick. Hard to even use my handicap plate out of fear of judgement and also feeling like I don’t deserve that spot when so many other lupus patients are fine and there are such worse handicaps than my severe fatigue and joint pain EVERYWHERE!! Hang in there. Keep us posted on your journey.
Just want to know if you are feeling ok. Wish your life is easier with less pain. I watch your video again, home made raw green smoothie is a life changer for me, just go to grocery to buy veggies and fruits and chia seed and a blender , my medication has been reduced from 4 medicines to only 1, and no pain but fatigue still is there but much much less than before. I wish my message can help, even a little bit . Best wishes.
It’s been a rough couple months. Bad lupus flare followed by Covid and then I found I have a very rare and serious genetic condition and so I’ve been going to like 4 doctor appts per week and I’ve just been scrambling to get this all in order so I can try to get back and make some more videos. I have some good ideas!
@@manwithlupusI am sorry you have been going through more challenges, no worries about updates on RUclips, your health is way more important than videos, did you consider reaching out to lupus foundation of America? Hopefully they can be a littered bit help.
Hey Ryan, how are you? I start Methotrexate and folate RX tomorrow. I was so looking forward to treatment due to serious suffering in pain especially from the heat. But now im just scared to take it. I have to try it right? Idk 🤷♀️ why im so scared. Anyway, hope you are ok.
Yeah you have to!! I am wishing I could. My doctors said the numbers on my last labs looked slightly better so they don’t want me to take it now. But I don’t feel better. I’ve been sick as a dog for two weeks. My pain is insane. I’ve had fevers and chest pains so bad I almost went to the hospital. It’s like wtf?! And maybe it won’t work for you, but you’ll figure that out and make antique move. It’ll be ok! I promise.
@@manwithlupus That’s crazy about the numbers compared to how to you feel. Well, let me tell you, this f’n Methotrexate made me sicker. And I’m not even kidding. I have a Gastro appt next week because after taking it on Monday, I couldn’t even move the pain was so bad, it put me into the worst flare and now all of a sudden my lower right side of tummy is swollen and can’t wear anything close to my body. I won’t go to ER or call my Rheumatologist because I’m pissed!! If there’s more damage to my liver or kidneys I’m done! I read that they are supposed to do a mri or ultrasound of your liver and do a kidney function testBEFORE the treatment!!?? I want to hear what the Gastro says before I jump to any conclusions but somethings def wrong! I just want a cure or at least some relief for ALL of us suffering with this horrible disease. Thank you for always commenting back, it does help a little, you are appreciated. ✌️
Oh jeez! Well that’s not good. Sorry I didn’t get back sooner, I’ve been really sick for a couple months. It’s been terrible. They did start me on benlysta which I started on Friday. We will see! I’ll keep you all posted on how it goes for me. My oncologist did say she felt benlysta was better than methotrexate since benlysta is lupus specific.
I am sorry it didn’t help you, raw green smoothie helped me tremendously. My chronic diarrhea and muscle joint ache have been gone from the 1st month I started green smoothie in Jan 2021. So for me, food and diet truly helped me to heal. But I totally understand your point of no insurance and no access.
For sure! I’ve been finding that diet plays a huge role. I’ve been struggling to keep anything down for the last year. I can’t gain weight and I’ve had to supplement a lot with smoothies to get my vitamins and minerals. I think natural remedies work and a lot of them at least help. They’re just so expensive. I wish we had more access to stuff like that covered by insurance. Even a box of meal replacements each month would do me sooooo much good. But it’s gotta come out of pocket and I only have so much left. Struggling to work makes it hard. It’s just a never ending cycle.
@@manwithlupusARE YOU sick, 🤢? I messaged quite sometime ago, and it said site unavailable. BUT I'm seeing people have messaged in recent weeks. Hope all good. J
@@manwithlupus on this, let me know if you get this SORRY 😔 to hear you have not been well.its HARD, I get it . I'm really bad, I'm in bed now most of the time. I'm SCARED and alone. Take CARE j
I’m sorry it’s been so hard. And loneliness is the worst. I just made a man with lupus Fb group if you wanna go check that out! I thought it would be a great place for us all to connect and chat.
Hello. I have Lupus. Everything you are dealing with so am I. Besides being sick all the time, my back pain is so painful It's crippling. I can't take my dog for walk. I fall down all the time. Your symptoms are exactly the same as mine. I am curious if those injections help you. If so maybe it's something I should mention to my doctor.
Well I didn’t get a very good run at them. By the time I got approved and started taking them for about 2 months I got Covid and they pulled me off of them so my immune system could fight off the sickness. Then my labs looked really good a few months later so they wanted to see if being off the medication if I stay stable or if I get worse. My recent labs started to look worse so I have to assume they’ll put me back on it and maybe I can take it long enough to experience some change. I just have not felt any better from the start. Nothing seems to help. But I do have a bone and bone marrow condition that we can’t get diagnosed and that could be complicating my symptoms.
I’ve been really sick for a few months and struggling financially so my time has been dedicated to working whenever I can. Trying to sell out home to get some financial stability back. Also fighting a disability case which just got denied and now we’re appealing. My family going through some really hard times so it’s just had to go on the back burner for little bit. I hope to start back up soon though.
@manwithlupus glad to hear it but I hope you feel better soon. Battling through things myself. Keep your spirits up okay! Maybe the YT can be of help to you! (((Hugs)))
Medical costs in the US are crazy. And if you're self-employed with a pre-existing condition, good luck getting a company to cover you. No one asked to have a pre-existing condition -- not lupus, that's for sure. I suppose life isn't fair so some people might say (using a non-lupus example) it sucks that you have xxxx disease, but that's not my problem. Good luck with that. But in other countries, everyone chips in to a big health insurance program and those who need care get it, and those who don't need care get peace of mind that if they ever do need care, they can get it. Personally I think a lot of those pushing supplements or herbs or homeopathy, etc. are not completely honest. But I also don't think the medical establishment just has patients' best interests in mind. Everyone is trying to make a buck, and patients are trying to live their best lives -- or in some cases, simply to survive. The comment I made on your other video -- about a doctor curing her own lupus by going on a raw vegan diet (permanently). As I watch videos of people following that diet -- the vitamix blender is $500 or more, and the fresh kale and fruit and flaxseeds etc. must cost a fortune every day. Not to mention the amount of time it takes. It is very tempting to try but ironically, where I live and with my insurance, getting lupus drugs and being treated by a doctor are cheaper than what it would cost me to go on a diet like that. But if that works and my doctors can't fix me, it seems worth a shot. But lupus and other diseases rob us of so much time and money -- they rob us of our lives. BTW -- the national healthcare where I live is great. I've heard that it's bad in other countries, so I'm not denying that. But especially when I had RA in the US and I was self-employed, it was literally impossible to get health insurance.
Yeah you’re spot on with all of that! I’m with you in that I think there are too many people just trying to make money. And I’ve been sold snake oil too many times and now I don’t know who to trust or believe so I don’t trust any of them. I get that I’m suffering but they’ve taken advantage of that and now I’m suffering more. So who’s the real one at fault? Me? Or the liars? Where are you from?
@@manwithlupus I'm from the Midwest in the US but have been living in Japan for a long time. There are some things that might be better about US healthcare -- for example, the doctors might spend more time with you at an appointment, and you might have to spend hours waiting to see the doctor, but in general, I figure medical expenses in the US are 10-100x higher (not a typo) than in Japan. The dollar/yen exchange rate is really favorable for the dollar right now (so prices in Japan converted to dollars are 30% lower than they were a couple of years ago) but for example, the pre-insurance price of Benlysta is $700/month, and since everyone in Japan must have insurance -- and all insurance covers the cost at the same 30% copay rate, that means that people can get Benlysta for $210/month, without having to jump through hoops or fight with the insurance company or argue about pre-existing conditions, etc. Oh, an in particular, lupus is considered a "rare incurable disease" (well, I knew that, but it has special status for insurance) so that the copay drops to 20% and there's a few hundred dollar per month cap on out of pocket expenses, so I expect I won't have more than about $500 a month out of pocket. On the other hand, if for some reason I wanted to do homeopathy or try a raw vegan diet with green smoothies or even get my vitamin D levels checked (which is not standard procedure for RA/SLE patients in Japan), none of that is covered by insurance, so I'd have to pay for that stuff myself. Doctors aren't nearly as rich in Japan as they are in the US, but for the majority of patients, I think the Japanese system provides descent coverage at reasonable rates for almost everybody. Not perfect, but it feels like much more of a "safety net" here than in the US.
Yeah I mean you’ve about said it all here lol! It’s just such a shame because there are so many of us out here seriously struggling and just in need of help.
@@manwithlupus I appreciate your channel, and I hope we both find something that works -- medically and financially. And while doctors and hospitals and drugs are the biggest part of the solution, I'm still looking for other insights and perspectives and (affordable) things I can do. That's how I found your channel!
Yeah my eyes fluctuate and always tell the story. Sometimes they look ok when I’m feeling a little better than usual but most of the time I have bags and sometimes they get red and look very, very strange.
JUST, A BIT CONFUSED 🤔 ARE PEOPLE NOT COMMUNICATING, OR DO I NOT GET NOTIFICATIONS. ACTUALLY I HAVEN'T HEARD FROM ANYONE EXCEPT YOU. MY eGRF HAS QUICKLY GONE FROM 100, TO 69, HMM, IT DID SAY, IT COULD BE CLASSED AS NORMAL, BUT NOT IF THE PATIENT HAS HYPOTENSION WOW IT'S BAD. SO I NOT SURE WHY MY DOCTOR HAS CHOSEN TO IGNORE IT ALSO HAVE HYPOKALEMIA. ANYWAY, A COUPLE OF SUGGESTIONS, (YOU MENTIONED A WHILE BACK, IF ANYONE WANTED YOU TO LOOK INTO. 1, HOW MANY PEOPLE HAVE LUPUS MOUTH!?? I HAVE IT REALLY BAD, ANOTHER THING MY DOCTOR HAS CHOSEN TO IGNORE. 2, THYROID, IM ONE OF THOSE, IT SEEMS, THAT THERE CAN BE UP TO 80% OF LUPUS PATIENTS WITH AUTOIMMUNE THYROIDITIS. OR OTHER THYROID PROBLEMS. HOPE THIS SOMETHING THAT INTEREST YOU, TO LOOK INTO, IF YOU'RE UP TO IT. TAKE CARE RYAN.. J
I’m still a pretty small channel so I’m sure it’s a little bit of both! We will grow and get there. What is lupus mouth? I have a lot of dry mouth issues and super sensitive teeth. I’ve also never head about the thyroiditis!! Please go on, I’d like to hear more. (Hopefully I get the notification of your reply).
@@manwithlupus HEY RYAN. YOU DON'T TO. HAVE LUPUS MOUTH. ASK GOOGLE FOR PHOTOS OF LUPUS MOUTH. IT IS APPARENTLY A COMMON SYMPTOM. GOING ON 4 YEARS AGO, I WAS, AWAY FROM MY HOME FOR A YEAR. LIVING IN A LIKE TROPICAL PARADISE, (SADLY, THE PLACE I WAS AT WASN'T). ANYWAY I KEPT GETTING SICK, AND THE PEOPLE I WAS WITH WERE GETTING SICK OF ME . I WAS ASSIGNED A DOCTOR THERE, SMALL PRACTICE, BUT BECAUSE IT WAS IN THE COUNTRY SIDE, THEY HAD A VERY SMALL DAY HOSPITAL. (HAD, MANY TIMES BEFORE, OVER THE YEAR'S ORAL CANADIA (THRUSH).. BUT, ALL OF A SUDDEN I KEPT GETTING IT, FROM JULY 2019, IN FOUR MONTHS I HAD IT FOUR TIMES. I SAW, A DIFFERENT DOCTOR, A YOUNGISH GUY, HE SAID "HELL, IF YOU GET THIS AGAIN THERE IS SOMETHING SERIOUSLY WRONG WITH YOU. EVERYONE IGNORED IT😳, I HAD IT IN MOUTH, OESOPHAGUS, AND GUT. MY GASTRO PROFESSOR DIDN'T CARE. WHEN I CAME BACK HOME, I WENT BACK TO MY OLD DOC. HE WOULDN'T EVEN LOOK IN MY MOUTH, JUST GIVE ME GEL TREATMENT. NOV, LAST YEAR ON MY B/DAY, I WENT FOR COFFEE WITH THE ONLY FRIEND I HAVE, (ONLY SEE HER ON MY B/DAY AS TO SICK). I COULDN'T EAT, SO WE WENT TO THE CHEMIST, I SHOWED HIM MY MOUTH, HE LITERALLY JUMP, GOOD GOD HE SAID, I MEAN IT'S NOT HIS FAULT. IT WAS THRUSH, BUT HE WAS ACTUALLY LOOKING AT MASSIVE SORES, USUALLY WHITE WITH RED RING AROUND THEM. MY MOUTH IS FILL OF THEM, IT'S SHOCKING, WHEN I TAKE AS MANY PHOTOS AS I CAN, I SHOW THEM TO PEOPLE AND THEY CRINGE. EVEN MY MOTHER WAS HORRIFIED 😨. TWO MONTHS AGO, I TRIED TO SHOW MY DOCTOR, SHE WOULDN'T EVEN LOOK. I WAS HURT AND DISAPPOINTED. LUPUS MOUTH IS QUITE COMMON. BUT, AS YOU WELL KNOW, EVERYONE IS DIFFERENT. RIGHT NOW 😂 I DON'T KNOW WETHER TO LAUGH OR CRY. I'M SO TIRED, I CANNOT GET OUT OF BED. WHEN I SAW DOCTOR TWO MONTHS AGO, SHE SAID SHE'D BE IN TOUCH IN TWO WEEK'S. IT'S 2 MONTHS AND NOTHING, I HAVE APPOINTMENT TOMORROW WITH HER, I AM GOING TO HAVE TO REFUSE TO LEAVE, UNTIL SHE DOES SOMETHING. SHE HASN'T EVEN EXAMINED ME. GOSH, SORRY 😔 THIS IS LONG. HOPE YOU'RE DOING WELL. J
@@manwithlupus RYAN, YOU REMEMBER I MENTIONED I WAS POSITIVE FOR MCTD AS WELL AS LUPUS, YOU MAYBE INTERESTED TO KNOW THAT Besides THE MYOSITIS TYPES, WITH YOUR ✋ HAND I THOUGHT IT COULD HELP YOU TO ASK YOU DOCTOR OR SPECIALIST, ABOUT BODY INCLUSION MYOSITIS, BECAUSE OF YOUR TERRIBLE TIME WITH YOUR HANDS. THIS IS JUST A THOUGHT TOO, ANOTHER MCTD, IS SOMETHING CALLED SCLERODERMA, IT CAUSES VERY DRY MOUTH, EYES ETC. I FELT WEIRD STARTING ABOUT, 2014 OR SO. AGAIN MY DOCTOR FAILED TO MENTION THAT MY TSH? LEVELS WERE HIGH, THIS WENT ON FOR TWO BLOODY YEARS🤐, FINALLY, (DIFFERENT DOCTOR AGAIN, MENTIONED IT,). I GOT UPSET, AND SHE ACTUALLY DEFENDED THERE POOR BEHAVIOUR, BY SAYING WHEN I ASKED, "IS THERE ANOTHER TEST YOU CAN DO!!???" YES, CAN TEST YOU FOR THE ANTIBODIES FOR AUTOIMMUNE THYROIDITIS, (BUT YOU WILL BE NEGATIVE). WELL IT CAME BACK POSITIVE, SERIOUSLY JERKS, I AM ON THYROXINE FOR REST OF MY LIFE. THE RATE, FOR THOSE WITH LUPUS AND A.T. IS UP TO 80%. THAT'S WHY I WANTED TO SEE IF OTHERS HAVE THESE PROBLEMS I ASKED ABOUT. ALSO ANEMIC DEFICIENCY (SPELLING ). WHATEVER YOU BELIEVE IN, PLEASE BEG FOR HELP FOR ME TOMORROW, J
Wow. I’m sorry for the delayed response. Been real sick for a couple months. Just dying with exhaustion and fatigue and a lot of pain and throwing up. I’ll defibrillator talk to the doctor about that!! Hope you’re doing alright.
Lol the fuck they aren't. Ivebeen managing and improving my health for 15 years now. It requires intelligence and a lot of studying,so not everyone is able. You have to be able to look at things holistically and searching for a true root cause. It can be very difficult, bc it's hard enough to find a good functional/ naturopathic doctor to work with and sick people can't usually afford it. That being said, you could spend your whole life trying remedies that might not be the right thing for you, but you're actually better off doing extensive research first. Lastly,I would never tell anyonenotyo take the conventional meds- atleast to start off
that's fair, however I've spent nearly 20 years of my life trying natural remedies, cures, supplements, IV therapies, IR therapy, cold plunges, saunas, everything under the sun to the tune of nearly $25,000 out of pocket with an absolute 0 result. Now I can't get the treatments I need because I've been robbed by snake oil companies selling crap. I do think some of these natural remedies could aid in treatment of some of the symptoms and you're correct that research is important. But what do you say to someone like me who has spent 20+ years with no results? Viable?
@@manwithlupus I think point was missed tho. Without finding the root and treating that, one would be lucky to even have endless time and money for therapies and even herbs. But at the same time, it's worth grasping at straws on your own, doing extensive research, and coming up with your own game plan to try something as conventional treatment can only give some relief while keeping your body in a state of disease. That being said, lm not at 100% and have severe celiac, mast cell, and have to travel sometimes for family so I'm not always in control of my environment and do have crappy autoimmune reactions that I suffer with at those times, but the most recent keys I found allowed me to make my life very livable and I've gained a lot of strength and kidney function back. In my case, I had undiagnosed mold sickness and vaccine reactions as a kid which were suppressed by steroids,which eventually trashed my kidneys. There aree several gene mutations that allowed metals to accumulate and cause iron, copper to be very low but built up in my tissues. Then heavy metals can often accumulate from there, after that fungus and parasites can overgrow. However, onething I have found that even conventional medicine acknowledges, is that negative emotions like fear and anger can destroy health (and organs like kidneys, liver, heart). I could blab on for a long time, but the point I am making is that it's worth it for each individual to keep trying especially with diet. I personally had to restrict a great deal bc myc celiac is so severe. I am eating mostly cruciferous veggies, chicken, eggs, calf liver, asparagus, occasional olive oil. Have you tried fasting at all? It's a great free therapy. I wouldn't think cold plunges would be good as it is a shock to the body
@@manwithlupus I heard it recommended once 2-3 days every 2-3 months for people with lupus. My MD from years back recommended it also. Noon to 8 is still a decent eating window, but for all I know you may need that. I would recommend keeping insulin down as much as possible tho
Hey Ryan Im a bit weary of admitting that I'm a homeopath, and natural health therapist. BUT I DO AGREE WITH YOU, ACTUALLY, I STOPPED ABOUT 20YRS AGO, WHEN I COULD NO LONGER HELP PEOPLE, ESPECIALLY MASSAGE, I DO STILL BELIEVE DEEPLY IN MASSAGE.THE ONLY REAL TIME I HAD FAITH IN HOMEOPATH, WAS WHEN MY KIDS WERE LITTLE, AND SO SICK WITH FEVER, THEY DIDN'T NO WHO THEIR MUM WAS I GAVE THEM BELLADONNA, (DEADLY NIGHTSHADE IT WAS LIKE A MIRACLE. BUT, ABSOLUTELY I AGREE, IT'S NOT SOMETHING THAT WOULD HELP WITH LUPUS. I'M SORRY PEOPLE MADE YOU FEEL BAD ACTUALLY, THIS SOCIALISATION, IS THAT WHAT I HAVE, BECAUSE IT'S NOT WORKING. WE ARE IN ABSOLUTE CRISIS. I AM VERY VERY FRIGHTENED. I'VE WAITED SIX WEEKS FOR MY DOCTOR TO GET BACK TO ME, ON WHAT IS HAPPENING WITH THE HOSPITAL 😮. LAST NIGHT NURSE LEFT MESSAGE ON MY FONE, FOR ME TO GO TO THE HOSPITAL. I CANNOT GET AN APPOINTMENT, WITH MY DOCTOR. I CAN'T EAT, I CAN'T WALK, MY BACK HURTS SO BAD, SEEMS TO BE MY KIDNEYS 😢. I AM NOT GOING TO HOSPITAL, UNLESS (NEARLY THERE) IT GETS UNTENABLE. Last TIME I WENT, I ALMOST DIED, SO IM VERY SCARED, THEY'LL JUST IGNORE ME AGAIN.
No worries about being homeopath! I actually really like the idea of it all. I just moreso struggle with people suggesting things and just believing that’s gonna be the fix. It also feels dismissive. Like I haven’t thought of that… years of misery and I just didn’t look into it.. yeah right. But I think a lot of it could and would help. The bigger issue for me is being able to afford it! And dang I’m sorry you’re in so much pain. I know that all too well. I’ve been dealing with so much nausea the last couple weeks I’m just burnt out and exhausted. I’m so sick and tired of being sick. I hope your docs can get you in. Sometimes going to the ER will get your docs attention. I hate that it has to come to playing games to get them to see you… but welcome to rheumatology and lupus I guess. It’s been hell getting anyone to treat me and then when they do it all feels so surface level and dismissive. It’s like I’m not able to stand up. I’m 40. This should be a pressing issue… but I guess I’ll just come see you again in 6 weeks with no solution. It’s exhausting.
@@manwithlupus SORRY 😔 TO HEAR ABOUT THE EXHAUSTION I BLOODY CRUEL MY FRIEND, NO ONE GETS IT, THAT I CAN RELATE TO YOU ABOUT. IT'S LIKE BEING HIT BY NOT ONE BUT TWO BUSES, DRAGGED THRU THE BUSHES A FEW TIMES, AND THAT'S ONLY TO START. I THINK I OWE YOU A BELATED HAPPY BIRTHDAY 🥳, FIRST RUclips I SAW YOU WERE 39YRS. I FEEL SAD FOR YOU, I CAN SEE YOUR STRENGTH OF WILL. I FEEL DOCTOR DON'T REALLY TAKE STOMACH ISSUES VERY SERIOUSLY. I HOPE YOU REMEMBER WHO I AM, I FIRST MESSAGED YOU FROM MY TABLET, UNDER LYTTELTONUSER, BUT IT WON'T WORK. HAVE YOU ASKED YOUR SPECIALIST, ABOUT MCTD, ( MIXED CONNECTIVE TISSUE DISEASE? ) I'D ASK, AS IF YOU'RE STRUGGLING TO STAND, IT COULD BE THE LUPUS. I HAVE A CRUTCH, TO HELP WITH MY BALANCE. LONG STORY, BUT HAVE HAD THE CRUTCH A LONG TIME. BE SAFE. AND THANKS FOR THE SUPPORT J
Thanks on the birthday wish. It’s actually this week. I’m so close it’s just easier to say forty haha. And yeah we looked into APLS and MCTD. I do show some clotting issue signs so APLS is a maybe but they did not think MCTD. I’ve asked repeatedly and they keep saying they don’t think that’s it’s. I know it’s more than Lupus. I have clear signs and symptoms of other disease. And yeah “hit by a truck” has never been so accurate. I cant even text by hand to write this because I’ve only been up for an hour and a half and my hands and fingers still won’t bend without severe pain. My issues standing aren’t all day, they are just the first 2-4 hours of my day. I have a literal routine I go through to just stretch and work my hands and feet out and then I stand up and kind of hobble around until I’m looser and then I stretch kinda yoga style, it’s actually a modified Jujitsu warm up. It takes me nearly until noon before I can actually stand and use my hands and not be in complete excruciating pain. Once I get through that if I stop moving for even 15-20 min all of it starts to stiffen up again and I have to stretch back out. The wild part is that the pain is not in my muscles though. The pain is in my joints almost exclusively. I don’t even know what to think anymore. I’m so sick of doctors I want to fight one. I’m an impatient man and I don’t like playing games or jumping through hoops for what I should naturally just have the freedom to peruse, healthcare. But it’s like I’m sick, I’m mentally exhausted, I’m physically a mess and I’m just at my wits end. The pharmacy couldn’t fill my hydroxychlorquine so I’ve been out for a couple days. That finally got filled today so I need to get up there, may be why my hands and feet are so overly excruciating today. I don’t know. My brain fog has been horrible like I lose time and get kinda confused what I’m doing. The whole process feels like it’s just too much and too hard.
@@manwithlupusHEY RYAN. HMM, I'VE BEEN THINKING ABOUT YOUR PROBLEM. I'M GUESSING THEY TESTED FOR Rheumatoid ARTHRITIS?. THAT CAN GO WITH LUPUS!. I DO WONDER, STILL IF IT COULD BE A MCTD, ONE OF THE FOUR? MYOSITIS. YOURS COULD BE BODY INCLUSION MYOSITIS. IT AFFECTS THE HANDS AND WRISTS, VERY BADLY. SERVER PAIN IN HANDS, NOT BEING ABLE TO USE THEM INCLUDING WRISTS MAKES IT WORSE, STOPPING U FROM, DOING NORMAL BASIC THINGS. DO YOU GET NUMBNESS, PINS AND NEEDLES. I'M HAVING THAT RIGHT NOW, PENNING THIS TO YOU. WHAT ABOUT, TRYING TO GET LIKE MEDS, OUT OF THOSE STUPID LITTLE PACKETS 😮. FROM MEMORY, AFFECTS FRONT OF LEGS, SHOULDERS, NECK, ARMS ETC WHAT ARE YOU LIKE AT GETTING UP A EVEN SLIGHT HILL OR STAIRS!? I CANNOT DO THAT. WITH THE MCDT, I DON'T THINK IT SHOWS, B.I.M. THEY, DON'T KNOW WHICH ONE I HAVE YET, BUT MINE CAME UP ON MY ANA TEST. AS I'M AN ARMCHAIR EXPERT ON DERMATOMYOSITIS (FROM MY CHILD 😢, BEING SERIOUSLY I'LL WITH IT, WHEN SHE WAS 14 YEARS OLD. IT BROKE MY HEART WATCHING THIS BRAVE CHILD OF MINE SUFFERING SO BADLY. (I HAD TO LOOK AFTER, FOR A YEAR, SHE WAS TO I'LL TO GO TO SKOOL. I FOUGHT SO HARD FOR HER, AND EVEN THOUGH SHE WAS DIAGNOSED, WITHOUT A DOUBT. HER SPECIALIST WOULDN'T TREAT HER, PROPERLY, WHY ( BECAUSE SHE WAS CHUBBY, WOW, HE SAID KIDS ARE USUALLY THIN, WITH WHAT SHE HAS). I HATE DOCTORS. ANYWAY, I WOULD ASK FOR AN EMG, TO TEST FOR MUSCLE ACTIVITY, AND MRI WILL SHOW UP A MYOSITIS OR R A . DAM, I CAN'T GET INTO BED OR OUT I'M IN PAIN PRETTY MUCH 24/7. OH I CAN SO RELATE TO BRAIN FOG, 😂 DID I JUST TAKE MY MEDS? UMM, I'M SURE I BOILED THE ELECTRIC KETTLE, IT IS A WORRY. HOPE THIS WASN'T TO LONG, AND SOME HELPFUL STUFF. TAKE CARE CHEERS J
That does sound about right. I have tons of issues with pins and needles and hand, wrist and finger pain. I’ve been asking about mctd but they say they don’t think so. Something that isn’t right though because I’m not getting better, only worse and I have weird symptoms like a lot of throwing up and nausea, seizure like things with my eyes. Sorry to hear about your kiddo too. That’s gotta be harder than being sick yourself.
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HI RYAN ARE YOU SICK.
SENT MESSAGE OVER TWO WEEKS AGO.
I HOPE YOU ARE WELL
ME, TOTALLY ON MY OWN, VERY ILL.
DON'T KNOW WHAT TO DO, I CAN'T WAKE UP 10, 12, 15 HOURS, NOT NORMAL.
HOPE TO HEAR FROM YOU J
BANG!!! You hit the nail right on the head. All of that stuff is so expensive and none of them are the silver bullet! It just causes more stress to think of buying them.
Yeah I think there are some remedies that likely help and work a bit. But there’s too many people selling snake oil or over exaggerating things.
THANK YOU. I get so tired of hearing and seeing about homeopathic and natural remedies. I see ads and people post about "curing" lupus and it's like, hah if your lupus is "cured" then you didn't have lupus to begin with. I agree with literally everything you said in this video. Thank you for making these videos, I truly hope that your situation improves health wise and financially, and I'll keep watching your videos. In fact next time one of my friends mentions natural remedies I might just have to show them this.
Thanks! I wish I had endless money so I could try it all sadly that’s not the case.
People also need to understand that lupus & autoimmune conditions affect different people in different ways, what may ease symptoms for 1 person might not work for others.
Very true. I find it wild how different lupus can effect different people.
@@manwithlupus People refer to lupus as the condition with a thousand symptoms.
Those of us with chronic serious conditions are fortunate to have simply the necessities in life Those people who have no idea what all areas in our lives are impacted by lupus should try even for one day to imagine walking in our foot shoes. Yes everything you say is right on !
Well I’m glad you’re here!
Thanks for taking the time to make these videos. I am a male in my 30's, started developing raynauds a couple years ago, and was hit with some serious hand joint pain / swelling late last year. Lead me to my PCP, which lead me to the rheum. High ANA, low wbc, low c3/c4, but no specific antibodies. I was put under UCTD with leaning towards Lupus, but I actually meet the criteria for Lupus. I was terrified of having scleroderma, and while I do not want Lupus, I know it could be much worse. My grandmother had Lupus and died from kidney involvement - but drugs/treatments have came a long way since then.
I turned my diet around this year after my joint pain started, and it has resolved my inflammation and joint pain about 95%. I was advised to start hydroxychloroquine, but it honestly terrifies me. I think the scariest part is that I am in my early 30's, is it realistic that I can stay on that medication for the remainder of my life without adverse effects. My eGFR has been slowly declining, getting into the 80's/70's, so I am off to see a kidney specialist soon.
I have been down the rabbit hole for alternative medicine. TA1 (peptide) has had a positive effect on my WBC, and I will check to see if it has done anything with the other bloodwork later this month. NAC is something my naturopath doctor had recommended, but it has some true studies behind it in relation to Lupus (showing improvement in all organs and blood work) - so I plan to stay on that long term.
Alternative medicines are so hard to know what’s right or not. I know people who have had luck with their diets and some natural remedies and they end up living king healthy lives! So I hope that works for you. I cannot get my lupus under control. I’ve been on hydroxychloroquine for almost a year and my lupus labs were worse than ever. They moved me up to benlysta recently. But we found I have another very rare and bad condition which is likely complicating all of this for me. Keep us posted on your journey!
I’ve gone down this rabbit hole too, as well as my adult DD who also has AI Dx. Between us we’ve spent thousands $$ on appts, supplements , tests for natural medicine. Overall, these attempts have helped me improve nutrient deficiencies, aided in digestion, helped me identify and refine good/bad foods specific to my body (like another commenter noted we’re all unique), and also clarify food allergies. I learned how to eat, rest, and digest in a way to aid my body. Now a few years since all my “natural” health care endeavors, all other AI Dx symptoms problems still exist, but I do feel better. What I can say, like any industry, there will always be someone willing to take your money if you’re willing to spend it. Not all providers are equal. I got taken advantage of because I was so damned brain impaired until a sweet N.D. saw my situation and gave me straight talk about what I should stop taking and trash. I have no regrets about going this route, as I understand what these methods may or may not help with. I learned a lot and made positive life changes which, while those changes aren’t an AI Dx cure, I will always be better off for having gone down the natural medicine rabbit hole. ❤
Great info, thanks for sharing! Yeah I’ve found some natural stuff that has helped. My biggest problem is that everyone promises the world and 95% of them have snake oil (at least to me). It’s like I find things I want to try and then just stall out and don’t do it because I’ve been burnt SO many times and I don’t know what to believe. I don’t know which way to turn or go. Now my last set of labs have slightly improved so they now changed their minds and don’t want to treat me with benlysta and want me to just stay on hydroxychloroquine. That’s all fine and good except, like usual, I don’t feel any better. I don’t feel slightly better at all. I can’t work, I can hardly hold it together and they’re just like “you’re doing good”. I don’t understand what to do. This is what always happens to me. The doctors say “well you’re better” and I don’t feel better at all. And then I’m left with nothing. No solution. Sick as hell almost every day. It’s like how am I going to live the rest of my life like this? It all feels so darn hopeless and like no doctor is ever going to help me. Im glad my numbers came down a bit but I was a very slight improvement in only a couple areas. My dsDNA is still up at 360. It’s like what the hell am I gonna do? Ugh. I know one thing. Im gonna keep building this channel up because I’m really liking this new community of people we are staging to build!
Best thing for lupus that does work is keep stress low, sleep well and stay out of the hot sun. Whenever you feel stress creeping up you have to just walk away from it. If you don’t sleep well call in sick at work don’t try to push through. These will definitely not cure lupus but will make your flares less severe and less often than what would have been. Of course also follow whatever medicines your dr prescribed also.
Yes I agree. And I also notice that it’s a cycle. So not sleeping causes more pain and that causes me to be cranky. Then when I try to sleep next I’m worked up and in pain and can’t sleep again. It’s all a very difficult struggle.
❤🥄❤🥄❤🥄❤ a few extras if anyone needs 'em! 😊
❤️❤️
🙏🙏🙏❣
@@manwithlupus HI RYAN, HOW ARE YOU DOING
I HAVE A LOT ON.
JUST WANTED TO CHECK IN.
I'M GONA B, MONTHS BEFORE I SEE ANYONE AT HOSPITAL.
I HAD ENOUGH, MY G.P. IS NOT FIGHTING FOR ME.
MY MOUTH IS A TOTAL MESS.
THE SORES ARE HORRENDOUS.
I CAN'T EAT ANYMORE.
I CAN'T GET OUT OF BED.
I'LL LET YOU KNOW WHY THE HOSPITAL, ARE MAKING ME WAIT.
DID YOU LOOK INTO, MCTD, CAUSE OF YOUR HAND'S ✋
CHEERS J
I had this exact conversation with a new friend last night. Come to think of it I have this conversation with someone at least once a month. For me the only "homeopathic" treatment that has done any significant good was switching to an all plant based diet. I find that the high fiber and high plant based protein does help with inflammation and joint swelling. I also do intermittent fasting and I've been able to maintain a 6/18 schedule for more then a year. I've gone from 360 pounds to 215 and have been stable at that weight for a few months now. I'm not claiming that I'm only doing these things and it's working for my condition because I'm also on a boat load of pharmaceuticals too. The main thing I've learned is when a homeopathic treatment is found to be effective they start calling it medicine and someone patents it. I mean there is a reason that autoimmune disease smells like menthol and Voltaren and it's because it works but I'll still use some sandalwood oil because it smells better. Crunchy granola is great on yogurt but doesn't make a good platform for medicine unless it's part of a sensible diet. What I have learned is that regardless of meds the cornerstones of health are a good diet, restful sleep, and movement.
as always though, I love the content and I'm so glad you're making videos. I think you have a good message and people need to hear it. I know how hard it can be to just get through the day and I'm glad you have chosen to spend your good spoons on sharing your story.
Congrats on the weight loss that is huge! I was once 250 lbs and I’m now down to 180 and have held my weight for years. I achieved that with strict diet and exercise only. The only diet I have found that has helped me has been the lion diet. It’s controversial but I was on it for a while and I felt a difference. But my family started saying it wasn’t healthy and so I stopped it. But now that I’m off of it, I feel crappier again. I agree. Good sleep, good diet. Good exercise is the cornerstone. But it sure is hard to do when your hands and feet barely work and you’re throwing up all the time! Thanks for watching. Glad you’re here.
Good for you, but homepathic is not food. It's just eating natural food source.
UNTIL I couldn't eat, that's all I ate.
Didn't help me at all
❤ glad helping you
@@jasanders5877 you're right, I used the wrong term. I should have framed it as a "Home remedy". I hope I did get across the message that homeopathy doesn't work as treatment for autoimmune disease in my opinion. Although I do strongly feel that a meat free diet does reduce inflammation based completely on my own experience. I know that there are a lot of people who are gluten sensitive so going meat free can be difficult without wheat but luckily I do just fine with it. what stopped you from eating if you don't mind me asking?
HI DO YOU KNOW WHAT'S GOING ON?
IS RYAN SICK!?
I SENT MESSAGE FEW WEEKS AGO, DIDN'T HEAR BAÇK.
JUST SENT A MESSAGE, IT SAID CURRENTLY OUT OF SERVICE.
HOW ARE YOU DOING
Thank you for taking the time to do these videos, as a fellow lupus warrior. 💜
You are so welcome! I’m glad you appreciate them. Hope to get a good little community going here.
Hey, hope you well.
Do you know what's wrong with Ryan?
I'm totally alone, WITH no SUPPORT.
Otherside of the World 🌎.
I messaged Ryan, while ago, and said site unavailable.
CAN you let me know if he's ok ❤j❤
I’m ok, just been flaring and unable to get to the channel. I’ll be back soon. Did you contact me via email?
@@manwithlupus didn't no you had an email.
Manwithlupus@gmail.com I don’t check it every day (I’m going to start to try) but that’s the best way to contact me!
Totally agree! I can’t even get my insurance to cover 5 pills for pain after knee surgery. I do take high dose Omega 3. But it is expensive. It’s very helpful with the pain in my joints, but not covered.
My insurance did not cover my pain medications for two years. I kept getting looks like I’m trying to be sneaky and get meds. I hate this disease. I hate that we look normal but are very sick. Hard to even use my handicap plate out of fear of judgement and also feeling like I don’t deserve that spot when so many other lupus patients are fine and there are such worse handicaps than my severe fatigue and joint pain EVERYWHERE!! Hang in there. Keep us posted on your journey.
Just want to know if you are feeling ok. Wish your life is easier with less pain. I watch your video again, home made raw green smoothie is a life changer for me, just go to grocery to buy veggies and fruits and chia seed and a blender , my medication has been reduced from 4 medicines to only 1, and no pain but fatigue still is there but much much less than before. I wish my message can help, even a little bit . Best wishes.
It’s been a rough couple months. Bad lupus flare followed by Covid and then I found I have a very rare and serious genetic condition and so I’ve been going to like 4 doctor appts per week and I’ve just been scrambling to get this all in order so I can try to get back and make some more videos. I have some good ideas!
@@manwithlupusI am sorry you have been going through more challenges, no worries about updates on RUclips, your health is way more important than videos, did you consider reaching out to lupus foundation of America? Hopefully they can be a littered bit help.
Would love an update! 🙏@@manwithlupus
Hey Ryan, how are you? I start Methotrexate and folate RX tomorrow. I was so looking forward to treatment due to serious suffering in pain especially from the heat. But now im just scared to take it. I have to try it right? Idk 🤷♀️ why im so scared. Anyway, hope you are ok.
Yeah you have to!! I am wishing I could. My doctors said the numbers on my last labs looked slightly better so they don’t want me to take it now. But I don’t feel better. I’ve been sick as a dog for two weeks. My pain is insane. I’ve had fevers and chest pains so bad I almost went to the hospital. It’s like wtf?! And maybe it won’t work for you, but you’ll figure that out and make antique move. It’ll be ok! I promise.
@@manwithlupus That’s crazy about the numbers compared to how to you feel. Well, let me tell you, this f’n Methotrexate made me sicker. And I’m not even kidding. I have a Gastro appt next week because after taking it on Monday, I couldn’t even move the pain was so bad, it put me into the worst flare and now all of a sudden my lower right side of tummy is swollen and can’t wear anything close to my body. I won’t go to ER or call my Rheumatologist because I’m pissed!! If there’s more damage to my liver or kidneys I’m done! I read that they are supposed to do a mri or ultrasound of your liver and do a kidney function testBEFORE the treatment!!?? I want to hear what the Gastro says before I jump to any conclusions but somethings def wrong! I just want a cure or at least some relief for ALL of us suffering with this horrible disease. Thank you for always commenting back, it does help a little, you are appreciated. ✌️
Oh jeez! Well that’s not good. Sorry I didn’t get back sooner, I’ve been really sick for a couple months. It’s been terrible. They did start me on benlysta which I started on Friday. We will see! I’ll keep you all posted on how it goes for me. My oncologist did say she felt benlysta was better than methotrexate since benlysta is lupus specific.
I am sorry it didn’t help you, raw green smoothie helped me tremendously. My chronic diarrhea and muscle joint ache have been gone from the 1st month I started green smoothie in Jan 2021. So for me, food and diet truly helped me to heal. But I totally understand your point of no insurance and no access.
For sure! I’ve been finding that diet plays a huge role. I’ve been struggling to keep anything down for the last year. I can’t gain weight and I’ve had to supplement a lot with smoothies to get my vitamins and minerals. I think natural remedies work and a lot of them at least help. They’re just so expensive. I wish we had more access to stuff like that covered by insurance. Even a box of meal replacements each month would do me sooooo much good. But it’s gotta come out of pocket and I only have so much left. Struggling to work makes it hard. It’s just a never ending cycle.
@@manwithlupusARE YOU sick, 🤢?
I messaged quite sometime ago, and it said site unavailable.
BUT I'm seeing people have messaged in recent weeks.
Hope all good. J
I have been sick for the last couple months. Where were you trying to contact me?
@@manwithlupus on this, let me know if you get this
SORRY 😔 to hear you have not been well.its HARD, I get it .
I'm really bad, I'm in bed now most of the time.
I'm SCARED and alone.
Take CARE j
I’m sorry it’s been so hard. And loneliness is the worst. I just made a man with lupus Fb group if you wanna go check that out! I thought it would be a great place for us all to connect and chat.
Hello. I have Lupus. Everything you are dealing with so am I. Besides being sick all the time, my back pain is so painful It's crippling. I can't take my dog for walk. I fall down all the time. Your symptoms are exactly the same as mine. I am curious if those injections help you. If so maybe it's something I should mention to my doctor.
Well I didn’t get a very good run at them. By the time I got approved and started taking them for about 2 months I got Covid and they pulled me off of them so my immune system could fight off the sickness. Then my labs looked really good a few months later so they wanted to see if being off the medication if I stay stable or if I get worse. My recent labs started to look worse so I have to assume they’ll put me back on it and maybe I can take it long enough to experience some change. I just have not felt any better from the start. Nothing seems to help. But I do have a bone and bone marrow condition that we can’t get diagnosed and that could be complicating my symptoms.
I am really sick by reading all comments from lupus patient...😢@@manwithlupus
Why did you stop making videos?
I’ve been really sick for a few months and struggling financially so my time has been dedicated to working whenever I can. Trying to sell out home to get some financial stability back. Also fighting a disability case which just got denied and now we’re appealing. My family going through some really hard times so it’s just had to go on the back burner for little bit. I hope to start back up soon though.
@manwithlupus glad to hear it but I hope you feel better soon. Battling through things myself. Keep your spirits up okay! Maybe the YT can be of help to you! (((Hugs)))
Have you ever experience any organ damage or been compromise in this 20 yrs from your diagnose ?
No, I fortunately have not had major organ involvement. My big problem is my joints. Between that pain and my fatigue I am just done.
@@manwithlupus Keep up brother , you have to stay in this battle , cheers from southern California
@@manwithlupusdo you have any recurrent fever and headache?
Medical costs in the US are crazy. And if you're self-employed with a pre-existing condition, good luck getting a company to cover you. No one asked to have a pre-existing condition -- not lupus, that's for sure. I suppose life isn't fair so some people might say (using a non-lupus example) it sucks that you have xxxx disease, but that's not my problem. Good luck with that. But in other countries, everyone chips in to a big health insurance program and those who need care get it, and those who don't need care get peace of mind that if they ever do need care, they can get it.
Personally I think a lot of those pushing supplements or herbs or homeopathy, etc. are not completely honest. But I also don't think the medical establishment just has patients' best interests in mind. Everyone is trying to make a buck, and patients are trying to live their best lives -- or in some cases, simply to survive.
The comment I made on your other video -- about a doctor curing her own lupus by going on a raw vegan diet (permanently). As I watch videos of people following that diet -- the vitamix blender is $500 or more, and the fresh kale and fruit and flaxseeds etc. must cost a fortune every day. Not to mention the amount of time it takes. It is very tempting to try but ironically, where I live and with my insurance, getting lupus drugs and being treated by a doctor are cheaper than what it would cost me to go on a diet like that. But if that works and my doctors can't fix me, it seems worth a shot. But lupus and other diseases rob us of so much time and money -- they rob us of our lives.
BTW -- the national healthcare where I live is great. I've heard that it's bad in other countries, so I'm not denying that. But especially when I had RA in the US and I was self-employed, it was literally impossible to get health insurance.
Yeah you’re spot on with all of that! I’m with you in that I think there are too many people just trying to make money. And I’ve been sold snake oil too many times and now I don’t know who to trust or believe so I don’t trust any of them. I get that I’m suffering but they’ve taken advantage of that and now I’m suffering more. So who’s the real one at fault? Me? Or the liars?
Where are you from?
@@manwithlupus I'm from the Midwest in the US but have been living in Japan for a long time. There are some things that might be better about US healthcare -- for example, the doctors might spend more time with you at an appointment, and you might have to spend hours waiting to see the doctor, but in general, I figure medical expenses in the US are 10-100x higher (not a typo) than in Japan. The dollar/yen exchange rate is really favorable for the dollar right now (so prices in Japan converted to dollars are 30% lower than they were a couple of years ago) but for example, the pre-insurance price of Benlysta is $700/month, and since everyone in Japan must have insurance -- and all insurance covers the cost at the same 30% copay rate, that means that people can get Benlysta for $210/month, without having to jump through hoops or fight with the insurance company or argue about pre-existing conditions, etc. Oh, an in particular, lupus is considered a "rare incurable disease" (well, I knew that, but it has special status for insurance) so that the copay drops to 20% and there's a few hundred dollar per month cap on out of pocket expenses, so I expect I won't have more than about $500 a month out of pocket.
On the other hand, if for some reason I wanted to do homeopathy or try a raw vegan diet with green smoothies or even get my vitamin D levels checked (which is not standard procedure for RA/SLE patients in Japan), none of that is covered by insurance, so I'd have to pay for that stuff myself. Doctors aren't nearly as rich in Japan as they are in the US, but for the majority of patients, I think the Japanese system provides descent coverage at reasonable rates for almost everybody. Not perfect, but it feels like much more of a "safety net" here than in the US.
Yeah I mean you’ve about said it all here lol! It’s just such a shame because there are so many of us out here seriously struggling and just in need of help.
@@manwithlupus I appreciate your channel, and I hope we both find something that works -- medically and financially. And while doctors and hospitals and drugs are the biggest part of the solution, I'm still looking for other insights and perspectives and (affordable) things I can do. That's how I found your channel!
Your eyes look weak and tired like mine horrible illness… my mother had this…. Need support
Yeah my eyes fluctuate and always tell the story. Sometimes they look ok when I’m feeling a little better than usual but most of the time I have bags and sometimes they get red and look very, very strange.
JUST, A BIT CONFUSED 🤔 ARE PEOPLE NOT COMMUNICATING, OR DO I NOT GET NOTIFICATIONS.
ACTUALLY I HAVEN'T HEARD FROM ANYONE EXCEPT YOU.
MY eGRF HAS QUICKLY GONE FROM 100, TO 69, HMM, IT DID SAY, IT COULD BE CLASSED AS NORMAL, BUT NOT IF THE PATIENT HAS HYPOTENSION WOW IT'S BAD.
SO I NOT SURE WHY MY DOCTOR HAS CHOSEN TO IGNORE IT
ALSO HAVE HYPOKALEMIA.
ANYWAY, A COUPLE OF SUGGESTIONS, (YOU MENTIONED A WHILE BACK, IF ANYONE WANTED YOU TO LOOK INTO.
1, HOW MANY PEOPLE HAVE LUPUS MOUTH!?? I HAVE IT REALLY BAD, ANOTHER THING MY DOCTOR HAS CHOSEN TO IGNORE.
2, THYROID, IM ONE OF THOSE, IT SEEMS, THAT THERE CAN BE UP TO 80% OF LUPUS PATIENTS WITH AUTOIMMUNE THYROIDITIS.
OR OTHER THYROID PROBLEMS.
HOPE THIS SOMETHING THAT INTEREST YOU, TO LOOK INTO, IF YOU'RE UP TO IT.
TAKE CARE RYAN..
J
I’m still a pretty small channel so I’m sure it’s a little bit of both! We will grow and get there. What is lupus mouth? I have a lot of dry mouth issues and super sensitive teeth. I’ve also never head about the thyroiditis!! Please go on, I’d like to hear more. (Hopefully I get the notification of your reply).
@@manwithlupus HEY RYAN.
YOU DON'T TO. HAVE LUPUS MOUTH.
ASK GOOGLE FOR PHOTOS OF LUPUS MOUTH.
IT IS APPARENTLY A COMMON SYMPTOM.
GOING ON 4 YEARS AGO, I WAS, AWAY FROM MY HOME FOR A YEAR.
LIVING IN A LIKE TROPICAL PARADISE, (SADLY, THE PLACE I WAS AT WASN'T).
ANYWAY I KEPT GETTING SICK, AND THE PEOPLE I WAS WITH WERE GETTING SICK OF ME .
I WAS ASSIGNED A DOCTOR THERE, SMALL PRACTICE, BUT BECAUSE IT WAS IN THE COUNTRY SIDE, THEY HAD A VERY SMALL DAY HOSPITAL.
(HAD, MANY TIMES BEFORE, OVER THE YEAR'S ORAL CANADIA (THRUSH)..
BUT, ALL OF A SUDDEN I KEPT GETTING IT, FROM JULY 2019, IN FOUR MONTHS I HAD IT FOUR TIMES.
I SAW, A DIFFERENT DOCTOR, A YOUNGISH GUY, HE SAID "HELL, IF YOU GET THIS AGAIN THERE IS SOMETHING SERIOUSLY WRONG WITH YOU.
EVERYONE IGNORED IT😳, I HAD IT IN MOUTH, OESOPHAGUS, AND GUT.
MY GASTRO PROFESSOR DIDN'T CARE.
WHEN I CAME BACK HOME, I WENT BACK TO MY OLD DOC.
HE WOULDN'T EVEN LOOK IN MY MOUTH, JUST GIVE ME GEL TREATMENT.
NOV, LAST YEAR ON MY B/DAY, I WENT FOR COFFEE WITH THE ONLY FRIEND I HAVE, (ONLY SEE HER ON MY B/DAY AS TO SICK).
I COULDN'T EAT, SO WE WENT TO THE CHEMIST, I SHOWED HIM MY MOUTH, HE LITERALLY JUMP, GOOD GOD HE SAID, I MEAN IT'S NOT HIS FAULT.
IT WAS THRUSH, BUT HE WAS ACTUALLY LOOKING AT MASSIVE SORES, USUALLY WHITE WITH RED RING AROUND THEM.
MY MOUTH IS FILL OF THEM, IT'S SHOCKING, WHEN I TAKE AS MANY PHOTOS AS I CAN, I SHOW THEM TO PEOPLE AND THEY CRINGE.
EVEN MY MOTHER WAS HORRIFIED 😨.
TWO MONTHS AGO, I TRIED TO SHOW MY DOCTOR, SHE WOULDN'T EVEN LOOK.
I WAS HURT AND DISAPPOINTED.
LUPUS MOUTH IS QUITE COMMON.
BUT, AS YOU WELL KNOW, EVERYONE IS DIFFERENT.
RIGHT NOW 😂 I DON'T KNOW WETHER TO LAUGH OR CRY.
I'M SO TIRED, I CANNOT GET OUT OF BED.
WHEN I SAW DOCTOR TWO MONTHS AGO, SHE SAID SHE'D BE IN TOUCH IN TWO WEEK'S.
IT'S 2 MONTHS AND NOTHING, I HAVE APPOINTMENT TOMORROW WITH HER, I AM GOING TO HAVE TO REFUSE TO LEAVE, UNTIL SHE DOES SOMETHING.
SHE HASN'T EVEN EXAMINED ME.
GOSH, SORRY 😔 THIS IS LONG.
HOPE YOU'RE DOING WELL. J
@@manwithlupus RYAN, YOU REMEMBER I MENTIONED I WAS POSITIVE FOR MCTD AS WELL AS LUPUS, YOU MAYBE INTERESTED TO KNOW THAT Besides THE MYOSITIS TYPES, WITH YOUR ✋ HAND I THOUGHT IT COULD HELP YOU TO ASK YOU DOCTOR OR SPECIALIST, ABOUT BODY INCLUSION MYOSITIS, BECAUSE OF YOUR TERRIBLE TIME WITH YOUR HANDS.
THIS IS JUST A THOUGHT TOO, ANOTHER MCTD, IS SOMETHING CALLED SCLERODERMA, IT CAUSES VERY DRY MOUTH, EYES ETC.
I FELT WEIRD STARTING ABOUT, 2014 OR SO.
AGAIN MY DOCTOR FAILED TO MENTION THAT MY TSH? LEVELS WERE HIGH, THIS WENT ON FOR TWO BLOODY YEARS🤐, FINALLY, (DIFFERENT DOCTOR AGAIN, MENTIONED IT,).
I GOT UPSET, AND SHE ACTUALLY DEFENDED THERE POOR BEHAVIOUR, BY SAYING WHEN I ASKED, "IS THERE ANOTHER TEST YOU CAN DO!!???"
YES, CAN TEST YOU FOR THE ANTIBODIES FOR AUTOIMMUNE THYROIDITIS, (BUT YOU WILL BE NEGATIVE).
WELL IT CAME BACK POSITIVE, SERIOUSLY JERKS, I AM ON THYROXINE FOR REST OF MY LIFE.
THE RATE, FOR THOSE WITH LUPUS AND A.T. IS UP TO 80%.
THAT'S WHY I WANTED TO SEE IF OTHERS HAVE THESE PROBLEMS I ASKED ABOUT.
ALSO ANEMIC DEFICIENCY (SPELLING ).
WHATEVER YOU BELIEVE IN, PLEASE BEG FOR HELP FOR ME TOMORROW, J
Wow. I’m sorry for the delayed response. Been real sick for a couple months. Just dying with exhaustion and fatigue and a lot of pain and throwing up. I’ll defibrillator talk to the doctor about that!! Hope you’re doing alright.
Lol the fuck they aren't. Ivebeen managing and improving my health for 15 years now. It requires intelligence and a lot of studying,so not everyone is able. You have to be able to look at things holistically and searching for a true root cause. It can be very difficult, bc it's hard enough to find a good functional/ naturopathic doctor to work with and sick people can't usually afford it. That being said, you could spend your whole life trying remedies that might not be the right thing for you, but you're actually better off doing extensive research first. Lastly,I would never tell anyonenotyo take the conventional meds- atleast to start off
that's fair, however I've spent nearly 20 years of my life trying natural remedies, cures, supplements, IV therapies, IR therapy, cold plunges, saunas, everything under the sun to the tune of nearly $25,000 out of pocket with an absolute 0 result. Now I can't get the treatments I need because I've been robbed by snake oil companies selling crap. I do think some of these natural remedies could aid in treatment of some of the symptoms and you're correct that research is important. But what do you say to someone like me who has spent 20+ years with no results? Viable?
@@manwithlupus I think point was missed tho. Without finding the root and treating that, one would be lucky to even have endless time and money for therapies and even herbs. But at the same time, it's worth grasping at straws on your own, doing extensive research, and coming up with your own game plan to try something as conventional treatment can only give some relief while keeping your body in a state of disease. That being said, lm not at 100% and have severe celiac, mast cell, and have to travel sometimes for family so I'm not always in control of my environment and do have crappy autoimmune reactions that I suffer with at those times, but the most recent keys I found allowed me to make my life very livable and I've gained a lot of strength and kidney function back. In my case, I had undiagnosed mold sickness and vaccine reactions as a kid which were suppressed by steroids,which eventually trashed my kidneys. There aree several gene mutations that allowed metals to accumulate and cause iron, copper to be very low but built up in my tissues. Then heavy metals can often accumulate from there, after that fungus and parasites can overgrow. However, onething I have found that even conventional medicine acknowledges, is that negative emotions like fear and anger can destroy health (and organs like kidneys, liver, heart). I could blab on for a long time, but the point I am making is that it's worth it for each individual to keep trying especially with diet. I personally had to restrict a great deal bc myc celiac is so severe. I am eating mostly cruciferous veggies, chicken, eggs, calf liver, asparagus, occasional olive oil. Have you tried fasting at all? It's a great free therapy. I wouldn't think cold plunges would be good as it is a shock to the body
@@manwithlupus forgot to mention sun,sweating, feet in the dirt daily even when it's cold. It's hard in the winter, but I split firewood to sweat
I do intermittent fast daily. I eat from noon to 8pm.
@@manwithlupus I heard it recommended once 2-3 days every 2-3 months for people with lupus. My MD from years back recommended it also. Noon to 8 is still a decent eating window, but for all I know you may need that. I would recommend keeping insulin down as much as possible tho
Hey Ryan Im a bit weary of admitting that I'm a homeopath, and natural health therapist.
BUT I DO AGREE WITH YOU, ACTUALLY, I STOPPED ABOUT 20YRS AGO, WHEN I COULD NO LONGER HELP PEOPLE, ESPECIALLY MASSAGE, I DO STILL BELIEVE DEEPLY IN MASSAGE.THE ONLY REAL TIME I HAD FAITH IN HOMEOPATH, WAS WHEN MY KIDS WERE LITTLE, AND SO SICK WITH FEVER, THEY DIDN'T NO WHO THEIR MUM WAS
I GAVE THEM BELLADONNA, (DEADLY NIGHTSHADE
IT WAS LIKE A MIRACLE.
BUT, ABSOLUTELY I AGREE, IT'S NOT SOMETHING THAT WOULD HELP WITH LUPUS.
I'M SORRY PEOPLE MADE YOU FEEL BAD
ACTUALLY, THIS SOCIALISATION, IS THAT WHAT I HAVE, BECAUSE IT'S NOT WORKING.
WE ARE IN ABSOLUTE CRISIS.
I AM VERY VERY FRIGHTENED.
I'VE WAITED SIX WEEKS FOR MY DOCTOR TO GET BACK TO ME, ON WHAT IS HAPPENING WITH THE HOSPITAL 😮.
LAST NIGHT NURSE LEFT MESSAGE ON MY FONE, FOR ME TO GO TO THE HOSPITAL.
I CANNOT GET AN APPOINTMENT, WITH MY DOCTOR.
I CAN'T EAT, I CAN'T WALK, MY BACK HURTS SO BAD, SEEMS TO BE MY KIDNEYS 😢.
I AM NOT GOING TO HOSPITAL, UNLESS (NEARLY THERE) IT GETS UNTENABLE.
Last TIME I WENT, I ALMOST DIED, SO IM VERY SCARED, THEY'LL JUST IGNORE ME AGAIN.
No worries about being homeopath! I actually really like the idea of it all. I just moreso struggle with people suggesting things and just believing that’s gonna be the fix. It also feels dismissive. Like I haven’t thought of that… years of misery and I just didn’t look into it.. yeah right. But I think a lot of it could and would help. The bigger issue for me is being able to afford it!
And dang I’m sorry you’re in so much pain. I know that all too well. I’ve been dealing with so much nausea the last couple weeks I’m just burnt out and exhausted. I’m so sick and tired of being sick. I hope your docs can get you in. Sometimes going to the ER will get your docs attention. I hate that it has to come to playing games to get them to see you… but welcome to rheumatology and lupus I guess. It’s been hell getting anyone to treat me and then when they do it all feels so surface level and dismissive. It’s like I’m not able to stand up. I’m 40. This should be a pressing issue… but I guess I’ll just come see you again in 6 weeks with no solution. It’s exhausting.
@@manwithlupus SORRY 😔 TO HEAR ABOUT THE EXHAUSTION I BLOODY CRUEL MY FRIEND, NO ONE GETS IT, THAT I CAN RELATE TO YOU ABOUT.
IT'S LIKE BEING HIT BY NOT ONE BUT TWO BUSES, DRAGGED THRU THE BUSHES A FEW TIMES, AND THAT'S ONLY TO START.
I THINK I OWE YOU A BELATED HAPPY BIRTHDAY 🥳, FIRST RUclips I SAW YOU WERE 39YRS.
I FEEL SAD FOR YOU, I CAN SEE YOUR STRENGTH OF WILL.
I FEEL DOCTOR DON'T REALLY TAKE STOMACH ISSUES VERY SERIOUSLY.
I HOPE YOU REMEMBER WHO I AM, I FIRST MESSAGED YOU FROM MY TABLET, UNDER LYTTELTONUSER, BUT IT WON'T WORK.
HAVE YOU ASKED YOUR SPECIALIST, ABOUT MCTD, ( MIXED CONNECTIVE TISSUE DISEASE? ) I'D ASK, AS IF YOU'RE STRUGGLING TO STAND, IT COULD BE THE LUPUS. I HAVE A CRUTCH, TO HELP WITH MY BALANCE.
LONG STORY, BUT HAVE HAD THE CRUTCH A LONG TIME.
BE SAFE. AND THANKS FOR THE SUPPORT J
Thanks on the birthday wish. It’s actually this week. I’m so close it’s just easier to say forty haha. And yeah we looked into APLS and MCTD. I do show some clotting issue signs so APLS is a maybe but they did not think MCTD. I’ve asked repeatedly and they keep saying they don’t think that’s it’s. I know it’s more than Lupus. I have clear signs and symptoms of other disease. And yeah “hit by a truck” has never been so accurate. I cant even text by hand to write this because I’ve only been up for an hour and a half and my hands and fingers still won’t bend without severe pain. My issues standing aren’t all day, they are just the first 2-4 hours of my day. I have a literal routine I go through to just stretch and work my hands and feet out and then I stand up and kind of hobble around until I’m looser and then I stretch kinda yoga style, it’s actually a modified Jujitsu warm up. It takes me nearly until noon before I can actually stand and use my hands and not be in complete excruciating pain. Once I get through that if I stop moving for even 15-20 min all of it starts to stiffen up again and I have to stretch back out. The wild part is that the pain is not in my muscles though. The pain is in my joints almost exclusively. I don’t even know what to think anymore. I’m so sick of doctors I want to fight one. I’m an impatient man and I don’t like playing games or jumping through hoops for what I should naturally just have the freedom to peruse, healthcare. But it’s like I’m sick, I’m mentally exhausted, I’m physically a mess and I’m just at my wits end. The pharmacy couldn’t fill my hydroxychlorquine so I’ve been out for a couple days. That finally got filled today so I need to get up there, may be why my hands and feet are so overly excruciating today. I don’t know. My brain fog has been horrible like I lose time and get kinda confused what I’m doing. The whole process feels like it’s just too much and too hard.
@@manwithlupusHEY RYAN.
HMM, I'VE BEEN THINKING ABOUT YOUR PROBLEM.
I'M GUESSING THEY TESTED FOR Rheumatoid ARTHRITIS?.
THAT CAN GO WITH LUPUS!.
I DO WONDER, STILL IF IT COULD BE A MCTD, ONE OF THE FOUR? MYOSITIS.
YOURS COULD BE BODY INCLUSION MYOSITIS.
IT AFFECTS THE HANDS AND WRISTS, VERY BADLY.
SERVER PAIN IN HANDS, NOT BEING ABLE TO USE THEM INCLUDING WRISTS MAKES IT WORSE, STOPPING U FROM, DOING NORMAL BASIC THINGS.
DO YOU GET NUMBNESS, PINS AND NEEDLES.
I'M HAVING THAT RIGHT NOW, PENNING THIS TO YOU.
WHAT ABOUT, TRYING TO GET LIKE MEDS, OUT OF THOSE STUPID LITTLE PACKETS 😮.
FROM MEMORY, AFFECTS FRONT OF LEGS, SHOULDERS, NECK, ARMS ETC
WHAT ARE YOU LIKE AT GETTING UP A EVEN SLIGHT HILL OR STAIRS!? I CANNOT DO THAT.
WITH THE MCDT, I DON'T THINK IT SHOWS, B.I.M.
THEY, DON'T KNOW WHICH ONE I HAVE YET, BUT MINE CAME UP ON MY ANA TEST.
AS I'M AN ARMCHAIR EXPERT ON DERMATOMYOSITIS (FROM MY CHILD 😢, BEING SERIOUSLY I'LL WITH IT, WHEN SHE WAS 14 YEARS OLD.
IT BROKE MY HEART WATCHING THIS BRAVE CHILD OF MINE SUFFERING SO BADLY.
(I HAD TO LOOK AFTER, FOR A YEAR, SHE WAS TO I'LL TO GO TO SKOOL.
I FOUGHT SO HARD FOR HER, AND EVEN THOUGH SHE WAS DIAGNOSED, WITHOUT A DOUBT. HER SPECIALIST WOULDN'T TREAT HER, PROPERLY, WHY ( BECAUSE SHE WAS CHUBBY, WOW, HE SAID KIDS ARE USUALLY THIN, WITH WHAT SHE HAS).
I HATE DOCTORS.
ANYWAY, I WOULD ASK FOR AN EMG, TO TEST FOR MUSCLE ACTIVITY, AND MRI WILL SHOW UP A MYOSITIS OR R A .
DAM, I CAN'T GET INTO BED OR OUT
I'M IN PAIN PRETTY MUCH 24/7.
OH I CAN SO RELATE TO BRAIN FOG, 😂 DID I JUST TAKE MY MEDS? UMM, I'M SURE I BOILED THE ELECTRIC KETTLE, IT IS A WORRY.
HOPE THIS WASN'T TO LONG, AND SOME HELPFUL STUFF.
TAKE CARE CHEERS J
That does sound about right. I have tons of issues with pins and needles and hand, wrist and finger pain. I’ve been asking about mctd but they say they don’t think so. Something that isn’t right though because I’m not getting better, only worse and I have weird symptoms like a lot of throwing up and nausea, seizure like things with my eyes. Sorry to hear about your kiddo too. That’s gotta be harder than being sick yourself.