Sjogren's Syndrome | Common Symptoms
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- Опубліковано 9 бер 2023
- Oftentimes with autoimmune diseases, many of them overlap. Sjogren’s Syndrome is the second autoimmune disease that I was diagnosed with.
Since I was diagnosed with Sjogren’s secondary to lupus, it is classified as secondary Sjogren’s.
Do you have primary or secondary Sjogren’s?
I have Sjogren's Syndrome and it causes autonomic dysfunction, it affects my lungs, my heart and GI and the ones that you mentioned. ❤❤
I have all of the above with dry nasal passages and I have to add gravy, sauce or some something to add moisture to my food otherwise I cannot swallow the food. I appreciate your posts.
Also, I HAVE MEDITERRANEAN THALASSEMIA ANEMIA TRAIT WHICK IS THE TEASON MY BLOOD CELL ARE ABNORMAL IN SUZE AND SHAPE AND I TEND TO BE ANEMIC. ALONG WITH THAT I LAVE RESTLESS LEGS SYNDROME. I WENT ON GLUTEN FREE DIET ABOUT A YEAr ago and that condition has become more bearable. Is it all linked, I don’t know!
Same! My symptoms overlap with Lupus
Dry ice and dry mouth are just the tip of the iceberg when you are going into a severe flare. Just ask my health insurance. LOL
I am getting my lip biopsy on the 2nd! I have all of that and abnormal blood test results. I'm pretty nervous about the procedure, but I'm excited to figure it out!
I have suffered from Shojrans Syndrome since I was 12 years old. It effects my body every day. Like my body is fighting a disease that no one understands! Some Doctor's don't understand the effects of this horrible disease!
Bathing with baby oil added to my bath every time. Lot's of lotions on my skin everyday. It effects all my organs as well! Dry lungs causing coughing. Joint pain especially in my hands, shoulders, hips and feet. Get a rapid red rash around my eyes causing a butterfly effect around my face. My eye glasses are tinted dark. Constantly drinking fluids all day long. Water 💧 with ice. Also causes the rash area to be hot to the touch. Sunburn feeling on my face all the time!
Showering 🚿
Hurts. Taking baths with baby oil every time.
Dry lady area between my legs. My wonderful husband is so supportive and understanding of my limitations on a daily basis for the rest of my life! No alcohol allowed for drinking. Alcohol makes it worse! Simple glass of wine 🍷 can lead to pain.
Joint swelling and tenderness.
Eye drops every day 4 times a day. Normally no one understands this disease and it's effect on my body every single day of my life! Sun Shine leads to blistering after only 30 minutes of direct sun exposure!
My husband and I love to ride Harley Davidson Motercyles but times I can't because of too much exposure to the sunshine.
Prayers and Love ❤️ keep me going every day! 🙏
Thank You for an excellent video that explains this Autoimmune disease!
My symptoms have thankfully been fairly mild compared to everything else. I mainly have issues with dry eyes, dry mouth and difficulty swallowing from time to time. The eyes have been the worst honestly and had to be put on three different eye drops to offer relief.
what type of eye drop. please my eyes is in painmmm
I am using
cyclosporine
Lotenate
Talimus Ls
Panthegel
Lubricants
@@karthikeyan774are those all prescriptions?
Nobody put things together when I was 23 and they said my teeth were just rotting from the inside out even though I don't do drugs, drink or anything like that. But I always have to have something to drink. If I don't within 20 minutes if not sooner my mouth gets so dry I can't talk right. Eventually the dryness went to my eyes and they told me I have Chronic Dry eye. I can't even wear contacts. They will stick to my eyeballs. Then my skin. It is always severely dry. When I put on lotion my skin just sucks up that moisture and this is coming from someone who drinks nothing but water daily. And large amounts for that matter. My bod is plenty hydrated. But then back in 2015 I started to get this prickly feeling in my feet. Pins and needles. I went to the Doctor and he was clueless. I did research and came across neuropathy. And it made sense so when it got worse I went back to the doctor who finally referred me to a neurologist. Had blood work done that came back ok and let the neurologist hook me up. The test showed nothing. Well that prickly feeling got worse and worse. More and more painful. It started to burn really bad and it hurt to walk. It seriously felt like my feet were covered in glass. I went back to the Doctor crying so many times. Finally I convinced him to send me back to the neurologist in 2020. This time the test showed peripheral neuropathy but they have no idea why I have it. I am not diabetic. I also started to show symptoms of MS during all this. Twitching, Jerking, brain fog. It's been miserable and nobody seems to know what is wrong with me. What I had noticed is my Aunt has the same issues. They can't tell her if she 100% has ms or not. And seem just as confused with her. Well then my cousin turned 34 and she started to get the prickly feeling in her feet. Same symptoms as my Aunt and I. I had already told my Doctor that I think it is genetic but he won't run any other tests. He bluntly refuses to. I'm not stupid. I know this stuff comes from somewhere. I saw the eye doctor last week and he stressed to me that I need to use eyedrops 4 times a day if not more because of how bad my dry eye is. It is impacting my vision. I talked to my cousin after and she started to talk about Pots syndrome and how she has some possible symptoms so I looked into it to see what it was. Bam saw Sjogren's with it and was like what is this. Looked at it and was like whoa. Every single symptom. My cousin also has these symptoms as well as my Aunt. After further research I saw the havoc this can actually cause. One of which is peripheral neuropathy. Someone please correct me if I am wrong. I am basing stuff right now off what I have read. And any advice anyone can give me would be wonderful. I know you shouldn't look up symptoms on the internet but I really don't believe this is just a coincidence either. So now I told my eye doctor and he is going to put a letter to my doctor to try to convince him to run some more tests for this. I saw blood work can come back normal even if you have this. All mine keeps coming back fine but I keep getting sicker. I just want answers so we can see about a treatment plan. I want to try to take my life back somewhat and it has been rather difficult with a Doctor who doesn't want to look into things further. But I was wondering from other people who have this have they had these kind of experiences? Does anything I say sound familiar? I have managed to find quite a bit on this but I figure hearing from people who actually have been diagnosed might give me some insight that I may be missing.
I seriously feel your pain
I’m 34 and have been searching for answers since 2009
I wish I knew how to help
All I know is something ain’t right and we both need answers
I dont think i have this, but i have another rare autoimmune disease and i can say fuck doctors, they mainly know basic stuff like flu etc. Googling my simptoms was one of the best things ive ever done. At least i could ask for specific tests instead of hearing the doctors bs on how it has to be stress or in my head. If doctor rejects to do the tests, then switch doctors untill you ll find one that will listen and then sooner or later something will come back positive and then you ll have your answers.
Im not a doctor so i cannot give you a diagnosis ofc, but i do highly recommend to research symptoms on google and to test for the diseases you suspect, only then you can be more sure. Its your life, dont trust a stranger to be good at his job
My family doctor told me it was all psychological. I asked for the sjogrens panel to be run and it came back positive.I quit her practice, but now I see a Rheumatologist who did more extensive blood work and it came back positive again. He prescribes pilocarbine 4 x a day. It releases saliva into your mouth and other dry areas like your eyes. There is an eye test called the Schermer’s litmus test to test how many tears you produce if any. If not treated you can end up with really bad eye problems! Try to get into a Rheumatologist to as soon as you can to get some help! It can lead to Lupus and Lymphoma. I hope this helps!
Make an appointment with a rheumatologist, they are the doctor that specializes in auto immune disease, any doctor that doesn't take your concerns seriously should be fired. Find a new one!
@@havegrace9111 I asked my doctor to refer me to one already and he dismissed me and basically said that isn't what I need and refuses to do it. And I can't get a new doctor. Where I am in Canada they don't have enough doctors so getting a new one for me is next to impossible sadly. So when he refuses to run scans or blood work I am screwed. Currently he is telling me I am at the max dose of Lyrica. I am taking 100mg twice a day. I could of sworn I can do it 3 times a day but can't argue with him.
Hi, I’m looking for information about this mostly unknown disease My Reumatology Dr said I might have Sjogren’s syndrome which is an auto immune condition! My symptoms are very much similar to the one described above in other cases: very dry skin, eyes, mouth and hair. A lot of inflammation on my joints, hands, fingers, and under my ear area or jawline. I am a little scare about it because I have never heard anything about this disease before and it seems that I have been with it for years now but I just was diagnosed with it. I am waiting for the results as new blood test was done to me last week! Hopefully we can get something done soon because I was told that there is no medication for this disease.
Yes, dry eyes, dry skin, dry mouth, joint and muscle pain, chronic fatigue, gastrointestinal issues, and brain fog. This is not the whole list.
Does it cause itching???? I just started itching like crazy a week ago. Ofcourse, it was just a week after I saw my rheumatologist and can’t ask if this is a symptom of my lupus or sjogrens, or just completely unrelated.
You haven’t even mentioned skin, Kidneys , lung and more prone for heart attacks and stroke
Who told you about heart attacks etc?
I think I have it, can it be diagnosed by blood work?
I have it and only in the last couple of years was I diagnosed. It was dry mouth that made me wonder if I had some health issue.
I think I have Sjogrens but my ANA keeps showing positive. My Rheumatologist just placed me in Hydroxychloroquine which is the only thing the would help with the Arthritis pain.
I have been diagnosed with hyperparathyroidism and my numbers for this is normal however the pain, fatigue, brain fog, anxiety and dryness is still persistent.
I always have a positive ANA and I have sjogrens. I was always told that a positive ANA could be Lupus and/or Sjogrens. What did your physician say?
My eye Dr recommended systane brand eye drops, either the ultra formula or the complete it's really helped also i take codliver oil tablets
The muscle and joint pain are indescribably horrible. I can’t even think of anything that compares to this
I have symptoms of dry mouth mild and some swallowing but not to bad.. thank God . Joint pain on and off on my left side only which is called jumping pain. Learning about it as it’s new for me.
Mam pls do video play about antipholiped antibody syndrome
I too suffer from sj with itching all over the body,dry mouth,eyes and skin
It could be Fibromyalgia, I have all these symptoms except twitching or jerking. The joint pain, burning hands and feet 🦶 is the worst. But I must say I dont have say eyes.
Also thought it was POTS, but I dont randomly faint. But my heart rate is mostly on 120, when I just sit still.
Could I ask you do get any burning pain in kidney or liver 🤔 thank you ❤
Do you have lupus?😮 It may affect your kidneys
The eye dryness drives me insane
I was never diagnosed when symptoms first started in my 20's. Now looking like a dried up paper bag at 55 I'm suffering with multiple organs starting to fail me and i can't take the Hydroxychloroquine. I sit home alone with no help. It's worse than cancer!
I have every symptom 15 years of this with no help or answers …
My joints are hurting now more and more
Before this it was constant dryness
Cold hands and feet and red rashes on face
All started after accutane
So I have no clue if it’s accutane mystery
Sjorgens or something I’m doing :(
I stopped my psych meds and no relief
Now I’m depressed even more
Can’t stand this
Speckled ana and igg4 elevated only things shown
Besides low d and high cholesterol
I was told I have Sjogren’s however, I doubt it.
A couple years ago I had a knee replacement done, and it appears I’m allergic to the heavy metals and possibly even the poly-resin used to secure or cement the implant to my bone.
Heavy metal implant oh allergy sensitivity or poisoning can happen with dental implants breast augmentation enjoy implants.
I think anyone and everyone who’s ever had dental implants don’t replacement, or even a rod and screws put in to stabilize a broken bone needs to get tested for heavy-metal impacts.
Dermatology testing will not work. You need to get the MELISA test and the PEEK test.
Mini orthopedic surgeons will tell you that there’s no such thing as a heavy metal allergy and yet if you go watch the documentary the bleeding edge, you’ll see that not only does it exist. It can be devastating.
What did you do my mom was allergic to heavy metal she couldn't hold change in her hand the middle buttons on pants would bother her have had both knees replaced and now having problems having lip biopsy for sjogrens
Yes i have an extremly dry mouth and dry lips all the time even worden than dry eyes i can never stop using lip balm and i have a huge Moon face because of the swelling ..
hate the swollen salivary glands causing that swollen face ..
@@jaspuar2493 Same i even thought about botox or something to get abit rid of my huge swolen face
Yup and then some 🙃
My eyes are so terribly dry I'm trying to do the fatty fish diet that dr berry talkes about. I wish I knew someone else with dry eye like me
I have discoid lupus and I'm pretty sure sjogren's, my eye dr recommended systane brand eye drops, they have different varieties but the ultra and the complete have worked best for me i hope this helps i also take codliver tablets
❤❤❤
I have salivary gland swelling but I got tested but neg idk
Same here. All the symptoms but negative Ana.
Same with my wife,all the symptoms show of syndrome but results r negetive including biopsy
All doctors are not knowledgeable about SJOGRENS Disease.
Does the glands swell so that it hurts to lay on face to go to sleep.
Yep, same here
For me.. dry eyes, dry mouth and esophageal spasms from no saliva are the least of my problems.
Sjögren’s attacks the entire lymphatic system… so wherever there’s a moisture producing gland.. there’s a risk of damage during a Sjögren’s flare.
I have systemic symptoms, and have had them since I was a child.
Recently I started Otezla for the psoriatic arthritis/psoriasis…. And my dry eyes and dry mouth have cleared up. Huh….
I am very sorry...My case is the same as your. Plese consider natural treatment. Good luck 🤍
How do they test for it?
To add onto Misty’s comment…. You have to be in active flare to have the SSA or SSB antibodies show up on bloodwork.
My advice for anyone … ask for the written lab work.. and wait til you reach your pinnacle of symptoms.
For me… it’s upper respiratory/bronchitis…. That’s when I tested positive for one of the 2 antibodies.
I have tested negative since… but that’s because I was not in a flare.
@Misty Jo With Primeaux RV I have all the symptoms and all my blood work comes back normal. I read that can happen. Is either that or my doctor isn't running the right tests.
@@katebanfield7229 wonder if this is why I can’t get answers
But I’m constantly dry and tired
Now joints kill
They never did until last 2 years :(
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Dry mouth and eyes
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