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Thank you for your channel. I agree, my Rheumy didn't really warn me either. I have Primary Multi-Organ Sjogren's... so far, lungs, liver, kidneys, digestive system, pancreas, skin, brain, dental (have lost all my teeth at the gumline), thyroid, etc...

Thank you so much!! you have really help me with this video!!

Just found you. Had my first visit to a rheumatologist this morning. She knows a lot about fibromyalgia. We’re trying to figure out if I have sjogrens along with fibromyalgia. The fatigue, depression and guilt are the worst. I feel like I’m being lazy or my family thinks I’m making this up. I’m hoping to learn more ways of coping with the symptoms. I think the fact you can put out videos and do all the other things for yourself is awesome! You should be proud of yourself 😻🙏🏻

Enjoyed your presentation, it helped a lot. God bless you,

My mouth is raw and sores. I cannot eat anything with ketchup BBQ, marinades,spices. My teeth are rotting.i use Biotine spray and with that I can eat pudding and soft banana,a smoothie And I suck on gummies

I have a lot of these symptoms but I also have dizziness and trouble thinking. Has anyone experienced these.

Thank you! I just got diagnosed. This is helpful. ❤

What about diet foods? I was just recently diagnosed and are still trying to learn about it :)

Really useful to hear these practical tips. This was seven years ago now, could you give us an update please?

The fibro or pain , you need to have a monthly Swedish massage or Thai massage and stretching to get rid of pain and it really helps a lot and more on fruits and green smoothies to get rid of inflammation and stop carbs and sweets . God bless to all !

You are inspiration to anybody with Sjogren's, you are so matter of fact about it, whereas me I started these symptoms over a year ago and it has sent me into depression. Many thanks for the tips, I feel better after watching your video.

Your gloves are amazing.

You look so healthy. You are glowing, dear.

Thank you 🙏

For the vaginal dryness I've had really good results with the Good Clean Love products. Some of the products are in drug stores with the lubes, and a lot more of them are available online. They aren't full of chemicals which was important to me

I have had limited scleroderma for decades now and the dry mouth goes right along with it. I can personally vouch for the Biotene Mouth Rinse. The Walmart Equate brand dry mouth rinse works equally well. I started using it about five or more years ago. I use it right before I go to bed at night. I can truthfully say that I haven't had dry mouth since I started using it. It works - a life saver. As far as dry eyes go, I definitely have that problem too. My regimine is Restasis Eye Drops twice a day and Relieva Eye Drops as needed during the day. The dry and tight skin is tough to tackle. I love "Working Hands" and Aquapor. Wish I could find a solution or remedy for the skin cracks I get around the edges of my fingernails. The pain is just awful and the cracks eventually heal up, but the crack is more or less always there and they will crack back open very easily.

What impact if any does Sjogrens have on dental implants? I have not been diagnosed as yet but my dentist is discussing with my Primary Doctor due to the speed my teeth are decaying and that my mother had Sjogrens.

You talking about being a burden, hit me hard.

I am in the process of getting diagnosed right now and I appreciate your tips!

Thank you, I’m a male with rumitoid arthritis and Sjogrens and the dry mouth is absolutely horrible, I hate it way more than my dry eyes. I’m 65 and it pretty much makes life miserable but I thank God I am able to manage. I definitely have compassion for all who have this because most people simply do not understand

I love your glasses.

I am praying for all of us.

Thank you for doing this video.

Thank you for this, I always feel so alone in this.

I had to get really dark, specially made sun glasses and I had to stop driving.

I have just been diagnosed with sjogrins and have fibromyalgia as well. I get where you are coming from. Because I don’t look sick people think it’s in my head. At the moment fatigue is ruling my life. I find you very incouraging. ❤

Instead of explaining to people about trying to help me with Sjogren's syndrome. From now on I'll just send them your video...sigh

none of that stuff worked for me either. i went to the pain clinic, what a joke. dr. told me He knows about fibromyalgia. go to water therapy. I could barely make it to appt. with him. I started getting this in 97. if he doesn't have it then he does not know. I tell them I do not have a life and need something to help me be able to walk a couple days a week. get dismissed. thankyou for sharing what you do.

Hi my dentist gave me prescription toothpaste to prevent cavities Hope this helps everyone

Remember, 10% of all Sjogren’s patients are men. It sucks for us too!

I’m a guy currently being tested for Sjogrens. Vaginal dryness is the least of my problems, for obvious reasons. But man you nailed the rest of them! Sensitivity to light has been a real bear. I live in the desert southwest.

Thanks You did a great 👍 👌 👏 video about expressing the situations you have been experiencing. Please share next updates, how are you doing . Connections are Needed either it's whatsapp or any other for sharing better solutions. I have been experiencing severe Dry eyes for more than 18 years. I haven't found good solutions for eyes. Hoping if this one eye condition had a solution it would have been super wherein other symptoms could be manageable.

I love Aquaphor for lips and Aveeno baby eczema nighttime balm for around the mouth/nose/wherever else you need it. I use Premarin cream (prescription) for dryness down there.. it has saved my life, and makes it easier to distinguish dryness/cracking/painful Sjögren's cuts from YI symptoms.

I was diagnosed with chronic fatigue syndrome and fibromyalgia caused by covid 19 however since the end of the last month i woke up one morning and have felt a hell of a lot better since then i wonder if im just getting a weeks or a month of not much symptoms is that possible?

It's the xylotol in Orbit gum that helps your mouth produce saliva to alleviate dry mouth. My dentist also recommends this, as I have dry mouth, due to the migraine medication I take. It was hard to find a good dentist who didn't blame me for not caring for my gums and teeth. I do. It's just a horrible side effect of my medication. Funnily enough the more water I drink the drier my mouth feels. It's weird.

A tip for everyone. I used to always have terrible dentist visits from decay. I got tired of the abrasive toothpaste and sensitivity so I switched to brushing and swishing with hydrogen peroxide ( don't swallow). I have had no cavities, no decay and no gum issues for over a year now. Tell everyone!!! Finally one Sjogrens symptom I can fix!

Thank you.. It feels like I’m a vampire.. my glasses are tinted with light reflective.. very expensive but they work

I fully relate to your thoughts. I am tired of all the "I have to fix myself before I can get better. " I have been on this crazy train trip for nearing 40 years. I just keep praying and refusing to give up.

I was told a few months ago that I have all the antibodies and markers for Sjogrens. The doc asked if I had dry mouth or eyes and I said no. She said she just doesn't think it's manifested yet. Well the past few weeks I have really bad dry mouth and I have the worst taste in my mouth all the time. Think it's starting to manifest itself? She said she could put me on medication for it if I start to notice things.

Thank you So much for the honest approach to these 2 “invisible” diseases. Yes I have both of them and am just now recovering from COVID. Of course the doctors have told me that with the 2 autoimmune diseases it is taking much longer to recover. I’m also a cancer survivor so at my age, 85, my health isn’t the best. Keep hanging on and I shall do the same. We just need to try to stay positive.

I also have Sjogrens and Fibromyalgia and Hashimotoes autoimmune thyroid disease. No fun.

This is may be common sense, but it's very helpful all in a linear presentation. It's also reassuring to have someone talk about exactly what I experience.

I’m 60 years old and was diagnosed with Lupus during my first pregnancy. Over the years I’ve added, fibromyalgia, arthritis,and today ( or this past month) with Sjögren’s syndrome……. So now I’m wondering what else can I add to my list. Thank you for your video. I understand what you mean about “advice “ . I have taken the drugs you talked about, but felt that they did more harm for me. I’m glad you can take them. I pray you have better days in the future.

Great job explaining I have this too

Hello dear, I am Brazilian and here...IS THE SAME!! I am really tired (lol) to explain my "problem" , because sounds that "everybody has the same". Dry eyes?? Everybody has. Dry mouth?? Everybody has! O discover that everybody has the same issues and THE CURE!!!! Big hugs from my Brazilian heart for your heart!!

Great info thanks I needed this vid!

Thank you for this video. I have been shamed and blamed for years every time I go to the dentist for example. The dentist always accuses me of not property taking care of my oral care because I get many cavities and suffer from gum disease because of the Sjogrens Syndrome. I recently had a very bad accident and broke 25 of my 28 teeth which my health insurance refused to pay for then because of my broken teeth and not being able to afford to pay for the work to fix them and months of trying to get my health insurance to cover the cost and dental work to be done I got cavities many cavities and so I finally called my home owners insurance to request they pay for my broken teeth to be fixed. Which I still have to come up with the money before the insurance will say if they will or won't reimburse me. It's very stressful, overwhelming and I have been forced to suffer in pain because of this. I am so frustrated yet the worst is being judged and not believed how badly the Sjogrens Syndrome affects me. I also have Fibromyalgia and many other autoimmune illnesses. Thank you for your video. I am sorry you suffer as well as anybody that suffers with SS or any illness. 💕💜💕😋🌹✌🏻🙏🏻

Thanks for the information.

Thanks for your video. It's well explained. Please do follow up videos and updates about Sjogrens issues and Solutions. It impacts highly. Thanks🙏

THANK you FOR all your good ADVICE ...ive got it TO it sucks YES it DOES I AGREE WITH YOU ON ALL ASPECTS.I ALSO HAVE FIBRMIALGIA AND ARTHRITIS AS WILL AND REYNAULDS PHENOMENON YEP. ITS ALL BAD ITS VERY DEPRESSING AND SAD AND PAINFUL. AND PEOPLE WHO DONT BELIEVE I HAVE THIS BUT THE DOCTORS DID BLOOD WORK AND IVE GOT THESE THINGS ALL OF THEM ITS AWFUL AND I WISH YOU THE BEST WE HAVE TO COPE THE BEST WE CAN IRS NOT EASY BEING SICK ALL THE TIME .GOD BLESS YOU GIRL I HOPE YOU FEEL BETTER BUT FLARES GET IN THE WAY OF LIFE.🛌😴😴🙏💓