Learn about Common Lupus Symptoms
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- Опубликовано: 17 май 2021
- Lupus symptoms are varied and complex and everyone is unique. However there are some common symptoms everyone should know. Learn all about it here.
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⏱Time Stamps:
2:14 - Malar Rash
3:20 - Photosensitivity
4:04 - Alopecia
5:20 - Oral Ulcers
5:50 - Joint Pain
7:25 - Pleuritis/Pericarditis
9:20 - Nephritis
*13:07 - Symptoms of Kidney failure
14:20 - Nervous System
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5 Things you need to know about your + ANA: • 5 Things You Need To K...
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Top 10 things to know about Lupus pt1: • Top 10 Things to Know ...
Top 10 things to know about lupus pt2: • Top 10 things to know ...
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👩🏻⚕️ About me:
Hello! I am Dr. Elizabeth Ortiz and I'd like to thank you for stopping by Connected Rheumatology. I am a board certified Internist and Rheumatologist with over 12 years experience practicing Rheumatology and am passionate about teaching & empowering patients to step up and partner with their doctor. Connected Rheumatology is based in Dallas, Texas and provides state-of-the-art, personalized rheumatology consults for anyone with confirmed or suspected rheumatic, autoimmune or musculoskeletal conditions.
We discuss all things Rheumatology, Immunology, Diet & Movement & Mental Health & Wellness because we believe IT IS ALL CONNECTED!
* The information in this video is not intended nor implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images, and information, contained in this video is for general information purposes only and does not replace a consultation with your own doctor/health professional. Any comments and/or recommendations made in the comment section by anyone other than Connected Rheumatology does not reflect the opinion or recommendation of Connected Rheumatology.*
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I was diagnosed by a dermatologist in 1982, I was 22 years old. I have experienced a lot of the Systemic Lupus reactions/ symptoms including, Kidney Nephritis, End Stage Renal Disease, Congestive Heart Failure, Arthritic pains, rashes of all kinds, and ALL the symptoms you mentioned. I became Diabetic from the post- transplant medicines and am on insulin. I am now 63 years old and am recently having trouble with my transplanted kidney and everything that goes with that. I have recently started having fluid in my lungs and need Thoracentesis almost every month. I just want to say that even though I have been very ill most of my life I still had an incredible life and times.
God bless you
Lifting you in prayer Rosa.
Thank God. But pls how do you live all these years sustaining the illness. My friend was just told by the Dr she’s 5years to live cause of this same lupus. Can you be of help me pls?
in jesus name be heal from head to toe may the blood ove jesus cover you from head to toe amen
Search for Jesus He will give you peace
I was having beginning signs of lupus. The numbers weren’t quite high enough for medication. The rheumatologist told me to wait for it to get worse and then I could get medication. 😮 I was not a fan of that idea. I started researching and found out that dairy and grains cause inflammation. I cut those out of my diet. Cut out all processed foods and additives. I eat grass fed beef, wild caught salmon, and lots of fruits and veggies. Ive been doing that for over a year. All symptoms of lupus are gone. ❤
Good for you! I truely believe we can heal our bodies through prayer fasting and diet, specifically to decrease bad carbs
Gluten, high FODMAP foods are inflammatory.
@jessicabrown6943 That’s amazing! Do you still eat beans and legumes like lentils?
Excellent overview of all things LUPUS.
There are so many different ideas of what to eat😢
1) Skin rash, butterfly rash on face.
2) hair loss
3) ulcers in the mouth (mainly painless)
4) arthritis (joints of hands, feet, ankles). Need a solid hour to get moving better. Swelling of those joint. Redness, morning stiffness
5) pleura inflammation (thin tissue around organs) become inflamed. Pain in chest with deep breath or laying in bed. Shortness of breath
6) Kidney disease due to inflammation of the kidneys. Tissue of kidneys start to stop working. Dialysis, kidney transplant. Most have no symptoms to of bad kidneys.
7) swelling, fatigue
8) seizures, headaches, brain fog, numbness
Thank you 😊
Thanks so much!
Thank You❤
After 15 years with lupus and fibromyalgia this is the very best video 🙏🌺have lost my colon 10 years ago it’s crazy 🙏now kidney but I fight and God is with me🙏🤲🤲🤲👼🏻👼🏻👼🏻
like me, i spent money on several pills that don't even work and not until I figured out the 100% natural, quick and undoubted solution.. I kept asking why it took me so long to discover Doctor Ani John HerbalHome on RUclips channel Shingle battle that almost crush my relationship.. I was able to get rid of this virus completely my result turns negative in just 7days. I was cured with the herbal medicine I bought from Dr.Ani John on RUclips channel contact him now for any kind of health challenge he cured me permanently.
When I was 37, I had a stroke I almost died the dr told my mother that he was not sure I was going to recuperate, I went to a hospital thru the er and for a week they were saying I was having a migraine, after another week in my house with severe headaches desired to go to another hospital and it was there when they diagnosed me with lupus, I started with the headaches six months prior and my doctor only gave me some pills. The sad part is that since I was 18 I started having all the symptoms and not even one dr did anything about it, even a dermatologist when I saw him for the butterfly rash that I had. Worse yet, I was called lazy by my family, that hurt more that all the symptoms put together.
I'm so sorry you had to go through that to finally get a diagnosis. I hope you are doing better now!
María Reyes, bless your sweet heart!!! How could your family be so cruel?!? Tell them Lupus is genetic and if they’re lucky, they or their children may get it. Then they can show you how not to be “lazy”. They deserve a good scare!
I was diagnosed with systemic lupus more than 20 years. Tremendous damage to organs but still here plugging along. So grateful to see this video. Most look at you when you tell them what you are dealing with so I keep it simplified. Bless you all.😉🙏
I went to college for 7 years to become a veterinarian, and lupus has taken that away. Like everyone else it seems, I have had many of the symptoms you speak of. Diagnosed at 19 (30 years ago) I have had many joints affected with hands and knees being the worst, extreme sun sensitivity, extreme hair loss, butterfly rash and other rashes, pleuritis, pancreatitis secondary to meds and then diabetes secondary to Pancreatitis, lupus nephritis, dialysis for 5 years and then a live donor kidney transplant, basal cell carcinoma (probably secondary to transplant medications), Avascular Necrosis and then two hip replacements and a knee replacement so far. When I was struggling to survive the pancreatitis I got a fungal lung infection that led to most of a lung being removed surgically and then anti-fungal therapy for 5 years, Sjogrens Syndrome, Hashimoto’s disease, protracted Seizures, Severe Migraines. The lupus made it hard to hold surgical instruments, stay on my feet for 18 hour days, handle animals, handle the environment that brought on migraines. It finally became impossible for me to do what I am, by far, the most passionate about. I gave up having children, and doing pretty much anything else in my life so I could focus on doing my job. I was either resting or working and now I have lost my job too. I can not figure out what I am still doing here and what to do with myself. I hate this disease. I am so tired of the pain.
I’m sorry, I pray in the Name of Jesus Christ that he puts his hand on you right now and heals you completely in his holy name. Acts 2:38.
@@jacquelineduque8025 i will pray for you.Jacqueline
I know these feelings only too well. You work your guts out and by the time you hit the peak of your career your body doesn’t work anymore. Same here, I feel like the pain and shell of a body are all that’s left of me at the moment.
@@jacquelineduque8025 I do not mean this disrespectfully but if there was a god he would never allow this disease to exist. If there is a god and he allows this, he is not a god I would worship.
@@missyoreilly4815 I am so sorry you are going through this too. I am not sure what else to say other than that. It seems like anything else I say just sounds hollow. I do hope what we are going through now will be something that does not exist in the future. A cure might be an ambitious thought but real medical management might be possible. Anything is better than what we have now.
My good friend was diagnosed several years ago with 'mixed connective tissue disease.' She also has graves disease, fibromyalgia, sjogrens, ulcers in her mouth, a bluish nose & rash across cheeks -seriously she has more than I can remember - every symptom that is named. When I met her i asked about Lupus & she said No, I don't have lupus. I just think it strange!
Thank you for explaining so well, I subscribed
You are right on point. Each of us is very different in our symptoms and disease manifestation. My lungs and heart have been affected “when I wasn’t looking”! I thought I was doing well until I wasn’t. I was 68 when finally diagnosed but thinking back, I have had symptoms here and there for 30 years. Now I’m 72 and feeling every year of it as fatigue. We do need a cure for this disease. The young women who develop it in their 20’s have such a long road to travel. Overall I was lucky 🍀
Lupus sucks... I don't think there is going to be a cure, look how many disease in this world and I never heard of any cure for not one of them.. these scientists not interesting on finding a cure all they wants to do is make drugs to get richer.. and what these pills dose is cause other problem in our body.. l
@@cassthompson6168 Maybe, but I really hope you are wrong.
You're Blessed indeed!
That is so my story as well
This is by far the most helpful video I have watched on this topic
Very nice overview. Best in long time I have seen. Nice job and thank you.
Great information ❤ I just ran 🏃♂️ across your page and I'm so glad I did! Subbed and bell hit!!! Thanks for the great information!❤
You’re a great speaker and your video is very informative. Thank you.
thank you, there are so many explanations to all the little random things i thought were disconnected through decades if my life!
Wonderful presentation! Thank you!
Your information is well appreciated and well understood. Thank you 😊
OMG! Dr. Ortiz I saw you at USC a few years back! You were so helpful and kind.
I appreciate you and thank you so much for all the information
Thanks for all that helpful information
Hearing you explain these Lupus symptoms brought tears to my heart. I am not crazy!
You are definitely not crazy! Hang in there!
Yu're not crazy believe me.🤗💗
Me too crying.
I was diagnosed with systemic lupus when I was only 15 back in 1974. I was so sick for 2 year prior to my diagnosis and had all these crazy symptoms going on in my body. Constant fevers. Anemia. Nephritis. Convulsions. Severe fatigue. Horrible joint pain. Hair loss. Swollen lymph nodes in neck, armpits & groin. But what finally helped finally get me diagnosed is I developed the classic butterfly rash. My doctor couldn't figure out what was going on with me until that butterfly rash erupted & that's when my doctor finally said he thought I had SLE. And blood tests confirmed lupus. I was just glad to finally know why I was so sick. Since being diagnosed with lupus I have had to have 8 total hip replacements & 5 wrist replacements due to side effects of high doses of steroids which caused joint deterioration. I also have stage 3 kidney disease from lupus nephritis & HBP & other complications from lupus and medication side effects.
Thank you for wonderful information.
i was finally diagnosed with Lupus in 2011, then in 2018 i was diagnosed with Lychen Sclerosis, the flairs go hand in hand, my hair does the thinning thing and the rash likes to shine brightest on my neck, but crazy enough its not on the bottom part of my chin area lol, i do my best dealing with Lupus and i do have a strong support team, my family knows if i’m not talking about Lupus then im fine, if i feel something coming on or something is different they know i’ll let them know and we’ll talk about it and they’re all willing to go to dr appts with me IF i want, thank you for your support, you sure gave me some peace, thank you
I'm 56 and was just diagnosed today. My sister has lupus too. She's had for about 3 years
First of all I want to say thank you for your studies my grandfather passed away with lupus I had I was diagnosed with Raynaud's when I was 16 listening to you I think I may have Lupus I have all the signs and symptoms I pray to the Lord that I don't thank you once again for your studies and I pray that you can find more and something for the pain sometimes sometimes the pain is unbearable and I want to thank you once again God bless you
Appeeciate this video and all the people in the comments offering information. I am about to go see my doctor to talk about the many symptoms I am experiencing that are Lupus like and I have ignored for to long.
Oh my goodness I would love to be able to see you! I have been dealing with so much of this for the last year and have found other things! Seen so many doctors that are at a loss of what to do. Ovarian cysts, hashimoto’s antibodies, body pain, GI issues, headaches and so so so much more. The hard thing is, it isn’t just one thing to tell the doctors. It’s so many things.
i most ove my life when to doctor told them i have paine everywhere the symptomes are what she said muscle fog brain ovary ....etc....its horrible diseses cause its multiple facette may jesus heal me you and all by his blood prescious amen
I think the positive sle lupus fits way better than RA, and fibro. Thank you for educating us.
I found this very informative and finding answers or good doctors are not easy. I wish you were in my area, I'd give anything to see you and get answers!
That was the best video on lupus I watched that you so much doctor for empowering the layman 👌👍
Very detailed info about pain thanks for sharing
My pleasure
My matron of honor has SLE. I moved out of state and she never told me she became so sick. When i finally found out she was awaiting a heart transplant. I was given a gift of being by her side 3x's before i got the call from her husband. I wish she had confided in me sooner.
I am saying this so anyone who is holding back from telling friends or lived ones... we are here for support. Please do not be embarrased or feel strange in telling us.
Excellent! Thank you 💜
I was diagnosed in 1997 with lupus I just found out recently I have kidney involvement now in which I’m on Benlysta now including hydroxocloroquine and prednisone I really enjoyed this video thank you 🦋💜💜💜💜
Your speach is very clear and bold
The word Lupus was just brought to my attention after my ER visit the other day. Thank you for your video. It is very helpful and now I see why they are saying it.
You must have had an amazing er doctor
I cannot believe his videos are like watching me hearing everything I have been going through. I was diagnosed at 19 and again at 29 and again in my 40s. No treatment was given to me till three years ago they kept miss diagnosing me and giving me stuff from the dermatologist Saying I just needed to improve my nutrition and exercise which I do all the time even in excruciating pain. I have always been an active person in a tiny person when I started breaking out with these weird butterfly, rashes and lesions and hives on my back, and my chest and my neck and the side of my face being told I had ongoing shingles and being treated wrongly for years. It increasingly got worse till I was on disability, no one understands lupus that’s around me they think you just take a pill and you’re OK. I thought that too in the beginning along with proper nutrition and building your immune system, which is a really good thing to do, I would walk 2 miles in agony just to make my body move I am at the point where I am 51 and feel very helpless after watching these videos, I realize the book I’m reading about. Hope it’s truly going to be an inspiration to someone else lupus is not just itchy. It is extremely painful and light sunlight is torture. Heat is torture to the lesions that I get that are so bad that all I do is lay there and cry so much that there’s no more tears to cry, I can’t sync people enough for reaching out to share their stories. I know no I am not alone and I am a snowflake. It’s hard enough to deal with lupus let alone try to explain it now that I have these videos if people really care to watch them and understand a little better, I get severe migraines every day. If I go in the sunlight never knew till today and I’m actually allergic to the sun. Thank you again for sharing your story.❤
I have fibromyalgia and arthritis and these symptoms sound almost the same as what I go through. One can mimic so many chronic diseases. Thanks and be blessed.
Me too
I am wondering about Lupos myself..Is it Really. Fibromyalgia. Or. Lupus??My. Bones hurt worse than before not. Just the muscle part of the. Fibro
It has gotten so bad I can't reach to scratch itch between my Shoulder blades...Had to get a back scratcher to reach my shoulder blades
My arms hurt sobad between my Shoulder and elbows
@@anitakirby2964 what meds do you take for fibromyalgia. I am diagnosed with lupus and have fibromyalgia kind of symptoms and none of the others she described . I am taking hydroxychloroquine and aspirin
They are ALL AUTOIMMUNE & can “overlap” which a rheumatologist in McKinney, TX (DFW AREA) said is what I have? When I initially had an attack was my Thyroid yet I told them several months after diagnosis & treatment that I STILL didn’t feel well? They drew blood (actually LOTS of little vials) to check laboratory testing? They were not able to find anything out from that testing?!?! They simply said “we have been told that autoimmune diseases can stack.” Then I asked for future reference “so what does THAT mean?” So I can know what to look for? They said “We are not sure...” 😡😲 THEN 10yrs later I just had a FULL BLOWN ATTACK w/PAIN as my #1 VERY DEBILITATING symptom?!?! I didn’t know U can live & STILL hurt that bad? Now 20+yrs after the initial attack I have a WORLD CLASS ENDOCRINOLOGIST & a WORLD CLASS IMMUNOLOGIST! The immunologist is basically where ALL MY MEDS COME FROM EXCEPT THYROID MEDS! The immunologist has practiced for over 40yrs & also worked overseas to see multiple patients & not just an isolated selection of patients that he chooses?? Medical School Professors can share from “textbooks”,however, I am SO FAR removed from a textbook case... I HAVE EMBRACED THE LABEL “UNICORN” even tho I hate it?!? I AM UNIQUE❣️I am Female... many medical professionals label “my type” as hysterical or heavily questioned if I take my MEDS according to Dr directions?? All bcoz I am SO UNIQUE❣️2009 I tested positive for RA & Systemic Lupus along w/a list of other autoimmune diseases that minimally showed up in Labs? Thankfully today I deal mostly with intermittent FLARES & residual PAIN from Initial onset... Take Care of yourself is my best word of advice?!?! Advocate for Urself❣️🙏God’s Blessings on YOU🌟
Sounds like herpes, cold sores, shingles, chichen los, conditions. HIV/AIDS, CANCER CONDITIONS, CANKER SORES, ETC.
My nan had Lupus ( passed from complications )
I knew I shared many traits with her . However autoimmune was not something I though we had in common .
I’ve always been sensitive to illness like common colds . Had GI issues when I was a kid and had other minor symptoms .
37 now and things got way worse , hair thinning , vascular damage , mouth sores that actually caused a tori growth to decay ( mouth ) and a host of other symptoms.
My pancreas was discovered to have massive damage as well as lung damage . ( I’m a non drinker or drug taker )
Being tested for Lupus but also for a second condition called Ehlers Danlos Syndrome ( EDS )
Possibility of both conditions and being sent to rheumatologist and neurologist to find out the answers .
All I can say is I went from 175lbs to 108lbs in less than a year . ( chronic Illness hit about 3 years ago ) but I’ve been sick or weaker than most all my life .
I wouldn’t wish this on anyone .
💜💜💜
❤
Prayers in hopes of healing ❤. There's a minister by the name of Elder Murray that will pray for you. Blessings
I have EDS (along with small fiber neuropathy, erythromelalgia and 50 other diseases and syndromes) and I’m being evaluated for lupus. Or rather, I’m absolutely convinced I have lupus and now I’m trying to convince my rheum. My ANA is negative tho, so I get dismissed before I can even give my symptoms. Hope you’re getting the care you deserve. This just sucks all the way around. Hugs.
@@rrmother3748 no care - just BS and am tired of fighting for care .
💜🦋💜
Just got my kidney transplant 3 years ago! I haven’t had joint pain since and Ive had less rashes too. I get so scared and have anxiety when my back hurts tho. I had a uti that out me i ICU because it got to the bad kidneys in my back. It was the worst pain ever. Well not ever because I’ve had some rough times with this lupus of mine. I’ve had lupus for 21 years and I say the worst pain meds as the chest pain. I have Pericarditis and in 2017 had a mitral valve replacement. My 2 year anniversary appointment for my transplant is March 31st and I am so scared. So scared that the stress of it is giving me chest pain and constipation. All my Lupies I wish you nothing but the best on your journey 💜💜💜💜💜💜💜💜💜
Yup.🤷♀️☝️& I'm praying for all with different levels of symptoms.from mild to severe& everywhere inbetween.👍😎💖
Don’t give up my friend there’s a permanent solution to your problem visit Doctor Ani John on RUclips channel he cured mine completely with his natural herbal remedies
like me, i spent money on several pills that don't even work and not until I figured out the 100% natural, quick and undoubted solution.. I kept asking why it took me so long to discover Doctor Ani John HerbalHome on RUclips channel Shingle battle that almost crush my relationship.. I was able to get rid of this virus completely my result turns negative in just 7days. I was cured with the herbal medicine I bought from Dr.Ani John on RUclips channel contact him now for any kind of health challenge he cured me permanently
I love you so much and awesome your explanation..!!
I have been dealing with health issues for the last 4 years. Gut issues, sibo, migranes, seizures , and Mix Connective Tissue disease. I get flare-ups really bad. It takes time and a good doctor to diagnose you. I finally found a good rheumatologist who listened to me and did the proper blood orders. I have been to 2 different neurologists and epiloptologist. No one seems to find the reason for my seizures. I have done all the tests possible. But i was recently diagnosed with lupus. I have done so much research myself, and sometimes i feel like people dont believe the pain and weakness i feel. I finally had blood work during a horrible flare-up i had. They took lots of blood work. The result came back positive for lupus. Never give up. Find help and get second opinions. The rheumatologist i found was my second opinion and the one that actually listened. Seek help and know that you are not alone. Best wishes to everyone. 💜
I’m grateful for your videos!! You have helped me to see that my Rhuematologist isn’t helping me like I thought he was. He’s not doing hardly anything he should be doing. My appointments have been a total waste of money for myself and a lot of gains for himself 😅at my expense!!! I’m so glad I decided to try another Rhuematologist. I have an appointment soon with a new one. It should be a lot better 😊 I now know what to look for in a good Rhuematologist thx to you!
I Was told 20 years ago I have Lupus. I don't have the butterfly rash. My neck, gets very red. I lost all the hair from my legs & under arms. I have a few bald spots on top my head and down to my ears Is very thin. I have kidney failure . I didn't know until a dr. told me , i had kidney failure. Both kidneys. Now i'm in stage 3. I get so tired , it's impossible to make plans. The pain I have is constant just different levels. My left hand gets so cold and a numb pain. I have brain fog more often now. I needed to tell someone, I picked you, The dr. I have now never speaks of Lupus & me. Thanks for letting me bend your ear,
* get a dermatologist to do a skin biopsy. My dermatologist did this I only had 2 stitches as she took biopsy from my chest rash. The dermatologist explained why she did not just scrape the skin surface to biopsy, she said lupus shows up in the deeper layers of skin. Mine was + for lupus
I am positive you could go on and on! I have a “rare” form of lupus and have been under a rheumatologists care for 20 years. I try to simplify my explanations to friends. It’s almost impossible. Thanks for this informative video. Hopefully it helps others who have this “snowflake” disease…no two sufferers are alike! 😊
I hope that you don't mind me asking, but which lupus do you have?
Snowflake disease. I like that description!
Same here!!
Thank goodness for your explanations,now i can share your video with them !!Thanks
Dr. Brooke Goldner, MD, Goodbye Lupus.
@@smc130gh
Thank you 💕
Thank you very very very much....
It is precious a doctor having a channel to talk about auto immune disease I was diagnosed with lupus a year ago. Sooooooo many questions and so confusion, thank you sooooooo much
Glad to help!
I really appreciate I found your channel and this information really helpful thank you I subscribed
I have been trying to figure out if I have lupus for the last 20 years there have been issues with getting in to a rheumatologist for me for the last few years coinciding with the pandemic and my husband,s battle with cancer after a 6 months to live diagnosis I hope I can rule it in or out one of these days
EXCELLENT VIDEO!!!
Thank you for your very thorough and detailed videos. Please keep them coming if you are able to so. Your videos have helped me tremendously to better understand autoimmune diseases.
I like so many others out there suffer from several debilitating autoimmune diseases…some of which you mentioned.
I cannot believe that it is possible, to have not just one, but in my case I suffer from 6. I’m sure this has made it more difficult for my Dr. to actually pin point what I have going on because many of the blood tests come back positive for different diseases, and the symptoms often “ overlap” with one another. I am so thankful that after many years that I have finally found a great rheumatologist at the Mayo Clinic in Rochester, MN. I have learned that I unfortunately if you have an autoimmune disease you are much more likely to develop others as well. Aren’t we lucky 👎😢
Pain, pain and more pain, debilitating fatigue and organ involvement. 😢 and I know that there are others out there that are faced with these same circumstances. UGH!! I feel for each and every one of you.
What is frustrating for me is that the people that are closest to me and the most important people in my life cannot understand the profound impact theses diseases have on our bodies and lives.… family, friends, previous employers in particular believe I am lazy, intentionally cancel plans at the last minute, introverted and exaggerate how I am feeling. I truly hope that others have the support and understanding they desperately need. I often hear, “ she is on disability because she is lazy and doesn’t want to work”…. which is the furthest thing from the truth.
I realize because we look “ normal “ on the outside ( whatever “normal “ is, haha). I get it”, but that doesn’t negate the fact that we have a serious illness/ illnesses, and we need support and empathy.
It is easier for others to understand cancer, etc., but because autoimmune diseases are somewhat less prevalent than cancer, sometimes the seriousness of these diseases are often misunderstood/overlooked by others.
I have been told that I am “ just making excuses for myself to either avoid responsibility or that I am looking for attention”.
We look “ normal “ on the outside and I can understand that unless you are dealing with these disorders yourself it is difficult to understand the effects these diseases have on relationships and life in general.
I don’t think anyone of us want to be known as the sick person.
I personally try to conceal the fact that I NEVER feel well because honestly, in my case nobody is interested in listening to my health issues…in other words, it gets old”.
I totally understand why they may feel this way, but that doesn’t mean it isn’t hurtful.
When people ask for an explanation I feel I need to be honest.
I do not want anyone in my life to assume I don’t enjoy their company. I try to convey to them that I wish for nothing more than to spend time with them, but my body is preventing me from doing so.
Does anyone else feel this way?
On another note,
Your videos have helped me better communicate with my rheumatologist.
I have learned through your videos to mention all of my symptoms, even though I may not think they are important or related often times they are.
In my case, I have suffered so long with all of these strange symptoms that they start to become normal.
By listing all of my symptoms, this has helped my new rheumatologist fit all the pieces of the puzzle together and along with different diagnostic tests come up with my diagnoses’ much quicker.
It is also very important that if you have a Dr. that is “ medically gaslighting” you that you find another Dr.
I wasted so many years with my previous rheumatologist dismissing my symptoms, even after pleading with him to “dig deeper”.
After all, we know our bodies better than anybody else and we know when something isn’t “right”.
So if you feel like you are not being taken seriously, it is in your best interest to find a Dr. that will listen and take you seriously.
I started to doubt myself, thinking I was crazy.
In my case it wasn’t until I developed organ failure I realized I needed to search for help elsewhere.
My organ failure could have been prevented or at least delayed if I was put on the appropriate medications to treat my conditions.
I hope I am not sharing too much of my personal journey, but my point being, whatever you have going on, if you feel as though you are not being taken seriously by your Dr. it is so important to be heard and taken seriously.
Delaying a diagnosis could be detrimental to your health.
I don’t want anybody else to have to go through what I went through.
It is so important that you advocate for yourself, and that you find a rheumatologist that will take the time to help you figure out what and why this is happening to your body.
Fortunately, ( haha ) the medications I am prescribed are used to treat many of the same conditions. I worry though because these medications are powerful and don’t come without side effects.
Even though dealing with the side effects are not pleasant, I have learned very quickly I need these medications in order for me to improve the quality of my life and prevent further damage to my body.
We all know autoimmune diseases are very tricky to diagnose, but your videos have made me more in tune to my body and have helped educate me, and better understand my conditions.
I truly appreciate what you are doing, and I hope you continue to put out these awesome videos.
Well wishes to all my fellow “snowflakes “
Thank you for sharing! You just described how I feel! 😢
A good friend of mine has been ill for 14 years firstly with autoimmune diseases. She was finally diagnosed with Lupus and stage 3 kidney failure only 6 months ago. Wasn’t even told she had it. Absolute neglect !
Thankyou so much .🙏💚
Diagnosed with AS years ago. Severe facial pain neck pain infections as well as multiple other symptoms. They assumed TMJ. I have been miserable. Finally realised all the salivary glands are inflamed and chronic infection possible stone. Now wondering is I have something else. I am in a public health system and it has been horrible. I also have ptsd and trying to regulate nervous system for 3 years. I did experience psychosis during a severe auto immune attack 3 years ago. I couldn't access medical care. That's what made the ptsd 10x worse.
Thank you for making these videos.
Well, just gotta say this vids got me seriously thinking about my own long-term issues & if its possible there's more of a connection between the several different conditions I've been diagnosed with. Those include 3 seprate diagnosed conditions that are specifically Auto-immune Diseases &/or Auto-immune Related Diseases! The several plus other diagnosed conditions/diseases I have been dealing with for many years (from aged 19 to aged 49, I'm 50 next month), some symptoms & the diagnosed conditions themselves fit easily into a lot of those covered in this video. It's been informative & eye opening! Actually it's quite scary now, come to think of it........! I'm not sure I can take much more & then there's the uncertainty, the diagnoses bit's fine, it's the uncertainty of if/when a flare up could add to pain, suffering & depression I already live with! Then there's unknown element of what/how many other issues/organs may be impacted & to what extent? It's a lot, don't get me wrong I'm pretty certain Lupus could be the thing that connects the proverbial 'Dots! Things fit, symptoms are familiar & it makes a lot of sense there'd be something that may possibly tie everything together, I've just put most of it down to everything & anything else, things like a predisposition due to family history/hereditary conditions & genetics, even the good 'ole 'It's My Age, My Hormones, I even said 'It's just 'My Luck or The Lack Of Good Or Better Luck!!! Yep silly, I know! Well I think I need to do a bit more research & gather a lot more information b4 I go demanding 'Test Me 4 This & That or I Think I've Got Lupus, Blah, Blah Urgh, Really? Another thing to start considering! Oh well, better luck never is what it feels more like! So Thank You for the information, it helps knowing 'I'm not Goin Mad or Hypercondriac either, I've been accused numerous times from my early teens into adulthood! Also if I am or do get a diagnoses of Lupus, there's help & treatments available, ways to manage, plan & live better to navigate flare ups if or when they happen. There's also the possibility instead of the current 5/6+ different prescribed pain relief medications & treatments, 2 of which provides very little, if any benefit anymore as it's been unchanged for nearly 31yrs, only increased once throughout! The more I type the more I realise it may not be a bad thing if it leads to better, greater or extra help in managing my declining health! A diagnoses could open access to 2, 3, 4 & upwards of more specific treatments, medications & other help & advice for more long-term management plans! Well, at least I can say 'I'm actually way less scared at the end of what become a rambling, rather than when I started with what was just supposed to be a comment! Haha!
I've a more 'Hopeful Feeling that whatever the outcome it could lead to much better help & guidance to everything that's available & if that is where I end up, then so be it I'll keep doin what I've been doin & get on with it & deal with it like usual.
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Very informative. I’m waiting on a diagnosis for myself and my daughter after 3 years of suffering.
Sending strength and best wishes!
How’d the results turn out? I tested my daughter today. Might test myself later if she come out positive. I’m nervous that I’m just being paranoid but I’m standing my ground.
That's me with the problems in the morning.
Thank you for the information. Question: what facials can be performed on Luous patients with flares controlled or under medication?
I found your video on PMR, thank you 😊
I was diagnosed with shorten syndrome and defiantly it was feom my bad diet and lack of movement. I was continuously eating whereas bread and Asian food chapattis and parattha. Everyone should know that the structure of wheat has changed. Diabetes and auto immune is from our gut. Drop the wheat eat only gill a third of your stomach, fast, drink green tea and cinnamon tea but fasting is key. Raw garlic with honey, olive oil salad and some salmon. All organic. I appreciate its expensive but if we are not going to protest against food companies removing any good and filling us with chemicals we have to make the change ourselves
Thank you
This has also caused Raynaud's in my hands especially when I'm cold. Fingers turn. Completely. White
The catch 22 when talking about bringing down inflammation from Lupus. The NSAIDS cause high blood pressure which also harms the kidney! My Rhumetologist put me on high doses of NSAIDS for my joints. But, within 90 days my blood pressure sky rocketed where it had always been prefect before that therapy/use of anti inflammatory drugs!!
Great thanks for your nice videos ،I'm very zealous to see all. ♥
Thank you.
I was diagnosed in Jan,with lupus I am 65 I also have Hashimoto's for years.can you have a talk about late onset lupus. But I think this is been going on for some years.this is my 3 Rheumatologist. But I guess it was just the right time and I went to a co op rheumatologist. And she's the one who diagnosed me.
Super informative and helpful video about Lupus. I enjoyed watching it and I like your calm relaxed presence. If i needed a rheumatologist, I would want to see you!Thank you!
I'm waiting to see a Rheumatologist. This is really helpful. Thank you for sharing.
Glad it was helpful!
I am very familiar with Lupus and Discoid Lupus. I believe the rash is caused by fungal infection in the eustachain tube sinus and lacrimal glands. Hair thinning is a fungal infection as well, you can thicken the appearance of thin hair by rinsing the roots with Epson salt. Progressive disseminated histoplasmosis, dimorphic fungus, also causes gum disease and sores in the mouth. The immune system looks for the pathogen and causes arthritis inflammation response in the joints of your body. I had this for years and it is 95% gone from diet. The WHO just published a paper on emerging fungal infections. I am not a doctor but a person who suffered terribly without hope of a cure, even if you don't believe me, it won't hurt to look into treating fungal infections and see if it helps someone suffering. There are countless papers written by researchers on this subject.
I believe you. We become what we eat. The fleshy, bloody, high sugars, starchy diet is diseasing our bodies. Even our shoes made of animal-body-parts - leather. it leeches out
Fungus. Our homes with parts from foreign countries 🇨🇳 have fungus too. And wHo makes money off all of US through the high price health insurance system.
Petri dish customers
Hey my sister is Digonosed by this disease... Plz tell me about this what should we do
@@nahida5895 autoimmune. Google it and read it in details.
My grandson was diagnosed with discoid lupus. He is 25 years old and have alopecia areata specially at the back of his head. Will be seen a rheumatologist soon. I have Sjogren and RA and lots of lupus’ symptoms
Thank you,
Thank you 💙
Thank you for your very informative video. I have been diagnosed with systemic lupus and lupus nephritis for 31 years. After many ups and downs, I am in a good place with my lupus and my kidneys are under control due to immunosuppressive drugs (Cellcept). I just wanted to mention another symptom I had early on - enlarged lymph nodes. A positive attitude, though often very difficult, has been helpful to me. Listen to your body and know when to rest. Best wishes to everyone with this disease.
Thank you for sharing!
Did you take the vaccine?
I’ve had the worst swollen lymph nodes for 6 years now, extreme fatigue, joint pain, the worst psoriasis of my life, headaches, small purple dotty rashes, the list goes on and on. I actually think I have lupus but recently my Dr referred me for CBT as he thinks im a hypochondriac. Very very disheartening.
@@homegirl4155 are you doing better? Did you find a decent doctor to diagnose you? I have so many symptoms, too. I don’t know what is worse, the illness or convincing the doctors you have actual symptoms. Women are so underserved medically it is unbelievable. This is where our country needs to be woke. Okay people.?! Most women are birthing, working, cleaning, cooking, you name it when symptoms hit. You wait several years to go in until you can’t take it anymore and instantly you combat hypochondria!?! Men never encounter this. At best a first attempt at uncovering a slowly emerging autoimmune disease results in “oh, you are just a stressed out female. There’s nothing wrong with you.” Then like these other women here have stated you move through life like that for 30 YEARS before the correct diagnosis is made!!!!! My grandmother died from this! She never complained and when she finally did it was too late. Ugh. Anyway, rant over and hope you have found help.
💜🦋💜
Has anyone experienced this issue:
I was diagnosed with lupus in 2010 after being sick for 8 weeks, my doctor thought it was the flu, but labs came back high positive ANA and high white cell count.
I started at a rheumatologist, they did lab and she started me on meds. I was ok for about a year and then got very sick requiring hospitalizations from sepsis and kidney infections, I could barely get out of bed. Rheumy started me on chemo and I got better, and stayed better with occasional Prednisone and daily quinine.
Fast forward to 2017 my rheumy retired and I got assigned a new Dr, she did bloodwork and I had a negative ANA, she had me come back in and told me I do NOT have lupus and pulled my meds. She says that I have fibromyalgia. Since 2017 I have had 3 positive ANAs and 3 negative. I am stuck in bed most days with pain and swollen joints, depression has me to where I just don't care much about anything.
When I try and tell my Dr that I felt better on lupus meds (Plaquenil) she gets frustrated with me and says "you do not have lupus!" She occasionally asks me if my primary care doc has had me checked for multiple sclerosis, Sjogren's or scleroderma? I tell her no, as she still fully believes that I have lupus. They have argued back and forth on the matter.
If I don't have lupus, that's amazing! But If I do have lupus and I'm not getting the meds I need for lupus I'm scared that my health will continue to deteriorate. My youngest sister died from lupus complications last yr at a young age and my grandmother died from lupus in 2019. Ive seen first hand how bad it can get.
Has anyone shared this kind of experience, Being told you have lupus and being treated for it and then being told you don't have it?
It's very frustrating and confusing. Sometimes Im made to feel like I'm a hypochondriac, she makes me feel like I have nothing to be worried about but at the same time she referred me to a kidney Dr because my kidney function is decreasing!
Lupus can be genetical (sister/you) + some of the sickness that you have listed can be caused by lupus + did ana came back - when you were on meds ?
Go have a third opinion by another praticiens so you can be sure, you are not hypochondriac. Good luck 🍀✨
I read another commentor who said she's had 2 positive and 3 negative. Find another doctor.
Thank you so much I’m under rheumatologist who keeps telling me my headaches are not due to the lupus. I’m going to start seeing a Rheumatologist who specializes in lupus
Same
I have adult onset stills disease. I got sick when I was 27 and spent 6 weeks at a local hospital before getting sent to UW Madison and they finally diagnosed me. That really took the wind out of my sail! I got limes disease when I was a child and can’t help but wonder if they’re somehow related and caused/triggered the stills. Good times, good times… 😒
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I just came across this video, I have a lot of the symptoms you mentioned I have had for years positive ana panel but all the doctors I have had say that they would need to see more and I’m always told I don’t have it. But my friend does and she says that all my symptoms are like hers which is so frustrating. I have kidney pains, chest pain, muscle stiffness and swelling hair loss, fatigue and more I pray 🙏🏼 I find a good doctor to take me seriously 😞 and I also have nerve problems I was diagnosed with neuropathy and migraines 😩
Research and try keto and Intermittent fasting which greatly help with inflammation. See what happens within a few weeks. 👍
@@aliciacowen5543 I went straight to carnivore(no egg white and restricted dairy) 1 migraine in 15 months, instead of 1 a week and I now bound up the stairs at work 2 at a time. I'm also an artist and it got to the point that I couldn't hold a paint brush half the time. I will never change my diet again if it means being sick.
Still get butterfly kisses on my face when I go in the sunshine, it's never hurt and it's only a little bit, my fracles help to disguise it.
❤️🥩❤️🥓❤️🥩❤️
Hi Dr, what is the best medication for Lupus with less side effects.
Stress triggers both my hair loss and my skin rashes.
I do not have Lupus, however, I've had all of the symptoms you have mentioned, minus seizures. My sed rate and CRP labs outside of the norm and have been going up the past three years. My doctor's are still trying to help and figure out what is going on. It's highly frustrating and painful at times. Thank you so much for this info. It appears you are very much informed. God bless!
A flare finally got me diagnosed. Symptoms got worse & worse over years.
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So why don’t they think you have lupus? Many in my have tested negative at least 2-3 times before testing positive years later as it got worse.
It's probably Lupus because the symptoms comes and goes. Get a panel Auto test. Test for Fibromyalgia as well. Go to quest and pay out of pocket if you don't have insurance.
@Jame Gumb oh yes he is ...very much alive!
I'm 68 years but was diagnosed 15 years it must stop now i need peace for what time I have left 🙏🇿🇦I have a good medical aid what about people in south Africa 💜so I'm grateful 💫💜💜💜
I have been suffering from Lupus disease for some year without having a solution to it until i done a research on RUclips i come and cross Dr.Auchi on RUclips channel. That was were i find effective herbal medicine to cure my Lupus disease permanently without having side effect from the herbal product.. i recommend Dr.Auchi herbal medicine for Lupus disease cure...🌹🌹
Thank you so much. You are greatly appreciated.
My Rhuemotologist didn't explain a whole lot to me about Lupus.
I learned to read my own lab results & did a lot of research.
I remember wanting to cry because I couldn't find a professional to help with all the questions I had at the time.
It's good to see someone like you sharing your knowledge on it.
You're a Treasure, thanks again!
God f****** bless you! Thank you for explaining this stuff to me. I'm going through one hell of a time I'm not diagnosed yet. only low-level lupus showed up on my blood test, which is why they're not diagnosing me there he's don't know what it is just yet, I'm 27 and I fell with exhaustion and pain in the last year-and-a-half oh, I have been bedridden too many times this year((💜))
Ugh! So sorry to hear this! Hang in there and don’t give up!
Never ending mouth ulcers, headaches & feeling vague, barely able to walk on some days, weight gain & oedema, extreme sun sensitivity, visual problems. Never ending some days
Thanks
Life is always beautiful when you have good health, for almost 4 years I was diagnosed with HPV, and I was lonely and sad, luckily for me I was addressed to a kind and great herbal doctor who helped me to restore my health back to me, he sent me the herbs that cured my Shingles virus 🦠 completely and the test results proves I'm now negative of the virus, all thanks to Doctor Ani John for the cure remedy for restoring my health, I will always be grateful to you for your kind gestures.
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Thank you ....wish you were my doctor ! 😭
I so wish you could recomend a dr in utah, I just want to cry
What do you think about palmitoylethanolamide for the nervous system issues? Would that help?
🤍☮️ GREAT VIDEO, FULL OF INVALUABLE INFO..💯📚👍🏼 MANY THANX FROM BONNIE SCOTLAND..UK…☀️🕉❣️
Plant based diet. 12 cups raw Greens everyday for 6 weeks. Also sulfur rich veggies. No met no dairy AT ALL. Thank me lter
Twelve cups of raw greens. That’s a lot of greens.
@@zee7130 yes in a smoothie its not even 16oz. thats why this way of consuming them is ideal
@@meraribenlevi6245 Thanks
@@zee7130 welcome! dont forget to add some fruit and flax seeds and drink slowly throughout the day.
Don’t give up my friend there’s a permanent solution to your problem visit Doctor Ani John on RUclips channel he cured mine completely with his natural herbal remedies
Thanks for sharing your knowledge, straight and simple.
I am a 60 years old male and yet not diagnose with lupus but I have many of the symptoms described by you and in the comments on this forum and others. What I have noticed is that most if not all comments come from women. Is lupus most common in women?
I'm in the same boat as you. Not diagnosed but 99% certain I have lupus and in the midst of several pending appointments.
From what I've read, yes, lupus seems to be much more common in women than men. I believe 9 out of 10 cases of lupus are women, or something like that, and this even extends to autoimmune diseases in general. From what I understand, the reasons for this aren't entirely well known but certain studies have found some leads as to what possible causes might be, like hormones or certain chromosome patterns. It's interesting stuff!
All I can say is everything you've mentioned, and I mean everything. For the past 7 plus years, I've been experiencing. I had one doctor mention lupus to me years ago, and soon after, she was gone. The doctor I have now just says it's age and weight, and I need to do better in life. I swear Black women's pain is so downplayed in medicine that it's disgusting. I've left names and notes for my family in case something happens to me. I need a Black woman doctor or woman of color doctor who understands. I'm so fed up with feeling depleted and overlooked by a$$holes who couldn't care less about my health. You can only speak up so much before they try to declare you crazy for wanting an actual doctor who takes their job seriously. So frustrating.
I keep getting recurring itchy red hand rashes and eye problems like redness and bumps under eyebrows. Could this be Lupus? Diagnosed with Fibromyalgia and CFS.
I have Factor V Leiden, Sorgensen, mitro valve prolapse, and Raynauds Phenomenon but I haven’t been diagnosed with lupus
Can you do a video on PMR? I enjoyed your video on Lupus
I had back pain for over a year and assumed I needed a new mattress. 🤦🏼♀️ My reumy is more of a specialist in Scleroderma (which I also have), so he didn’t check my kidneys. Thankfully (?) my bladder had stopped working and had to be removed and that’s how a doctor figured out my kidneys are in Stage 3 failure. I also had increasingly bad head aches, to the point of crying and talking and moaning in my sleep, and hospitalization. I started having stroke symptoms and the hospital checked my spinal fluid and said it was Lupus of the Cervical System. Not exactly a surprise as I was diagnosed with MCTD at 9 years old. I’m 47 now.
Hello! I was just told by my neurologist that my ANA antibodies are positive with Homeogeneous Pattern 1:320. A lot of my protein levels ( Beta Golbulin, Globuin and Total protein)are flagged as high with C3 serum flagged as high also. My Neurologist tested me for antobodies such as Anti-Jo-1, DS DNA, CCP, Centromere B, Chromatin, SSA and SSB, Smith, SLC 70, RNP, M2, Actin antibody, and Antiparietal cell antibody. They are all within range. The ones she did not test for are CCP, Rheumatoid factor, Cardiolopin and Ribosomal P. I have a lot of symptoms like hair thinning/ loss, joint pain, muscle weakness in arms and legs, itching with no rash, electric shock down my neck when I move my neck, cog fog, cramps and spasms all over my body with tingling and twitching, tremors after I lift something, fatigue, body aches, burning sensations in my joints like they feel warm too the touch sometimes, and last month I had some difficulty walking and with balance issues. I told my neurologist that I believed my symptoms where related to Multiple Sclerosis but after my blood results she referred me to a Rheumatologist. I have an appointment with them on July 11 and I'm nervous because there is lupus in my family ( my aunt and my cousin on my mom's side have lupus). I don't know about my dad's side. Is it possible to have more than one autoimmune condition or are my symptoms pointing toward Lupus? I just can't wait for my appointment . Any advice would be greatly appreciated 😅
I was diagnosed with encephalopathy due to lupus SLE, I was having short term memory loss, trouble spelling words I was sent for special testing and that’s how they came out with the diagnosis.
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So glad you got answers and hopefully you are feeling better now!