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.
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!
One of the biggest issues I have had has been my eyes . Because of extreme dryness I have done damage to my cornea in both eyes. I have also had serious eye infections. So take care of your eyes . Dry eyes is nothing to take lightly.
I use different kinds of natural drops depending on the need. When I wake up and my eyes are super inflamed, I will use (AMAZON) Sovereign Silver drops (used on newborn babies) and it stops the red. I over used over the counter drops after developing allergic reaction to preservatives in eye drops. MSM liquid (health food store) is an alternative and hexane free castor oil (used in prescription eye products) as an eye drop at night. Hope it helps.
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
Likewise. 68. All I learn is online. Came on slow about two years ago then sped up. I can barely taste food. Also find the biotiene mouth rinse consistently give me a little saliva right after and then I wake up totally dried out middle of night. Makes it worse.
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 was diagnosed 8 years ago. Just last year I started getting sickly, I have migraines with body aches, dry eyes, nose, mouth, I lost pretty much all my teeth. I was never followed along with blood work, untill I got ill. My blood work came back up to 300, was put on hydroxy chloroquine, gabapeptin. 18 years ago, I also was diagnosed with hypothyroidism. They blamed that untill I got sick. Now I feel so crummy. But I have not lost faith or hope, I am willing to try out new things to help me feel better.
@@LauraauroraYT Hello there~ I suspect Sjogren'n, would like it ruled out. I'm 65, have been dealing with super scratchy dry eyes mainly in the morning for over at least 20 years with very overactive eye "boogies" and bloodshot eyes, blurry vision worse in morning and improves as day goes on, super sensitive to lights-especially bright or flashing, a very dry mouth and throat, very dry skin in last 10-15 years (very oily before then), fibromyalgia diagnosed in 1995, 3-4 migraines a week on awakening or right before bed, cramping hands/feet, wrists ache, feet burn and tingle but are definitely not numb (not diabetic). Vaginal dryness and burning even without a man in my life for 20+ years (had recent normal pap other dry tissue). Recent diagnosed ventricular tachycardia that occurs at least daily. Have had anxiety in my life so my doctor blames everything on anxiety, doesn't test me for anything unless I request it after seeing videos like this one. What blood work or other test did you have to determine your diagnosis? I would like to have Sjogren's ruled out. Thank you much.
For anyone experiencing these symptoms, I struggled with this syndrome for years with severe dry mouth, dry eyes, dry nose with nose bleeds, brain fog, insomnia, stomach issues, etc and after going on a zero carb carnivore diet it completely cured all symptoms. I realized after introducing foods back in that gluten and wheat where the main culprits but sugar seemed to worsen it as well. I had also gone on a keto diet since then which seemed to help but not as much as a completely zero carb diet.
hi. I also find keto diet helpful. Gluten, lactose and all types of sugar definately make it worse. Another good thing is consuming more fats helps to fight dryness. More things that work for me. I have troubles with lotions and washing liquids: they irritate both skin and respiratory system. So I always wash my skin with quality olive soap. Also please try to get good sleep and eliminate stress from your life. Yoga helps a lot, too.
I was diagnosed with Sjogrens 5 years along with SLE a form of Lupus. It's super tough, my son will be turning 3 soon and I can barely keep up with the little guy. Thank you sweetheart for doing this video, hope you have more good days than bad. Xoxo
Mrs_Paprika please what is the pest for dry mouth???..! .I don't find in my country. .do u now any product from Amazon or herbal. GNC?????please answer I am sufuriiiiing🙇
Few more tips ~ my wife keeps one of those big syringes by the bed full of fresh water (it is one of those turkey basting syringes from the dollar store ~ not a dropper type turkey baster, but the one that you can inject the butter into ~ just remove the needle part (ouch) ~ at night she can squirt some water in her mouth instead of having to sit up every time she wakes up with a dry mouth/ throat ~ also great using this, as she is a nasal CPAP user which the syringe works great getting right to her mouth. As for Ketchup we only use one type and my wife was the one who asked Heinz years ago to make and is now on the market ~ Heinz has a No Added Sugar Ketchup out there ~ Sold at Walmart, Loblaws, some health food stores, and carb free stores. As for Plaquenil (Generic name: Hydroxycholoroquine) it is a suppressant drug that is normally used for Malaria to suppress the immune system. It has a ton of side effects and my wife can not tolerate it. The side effects were worse than having the symptoms. It takes 3 months for Hydroxychloroquine to work and another 3 months for it to come out of your system. Great Video and surprised to see my wife uses the same Bausch & Lomb "Soothe" eye drops and the gel (she uses at night time). Keep the sugar out of your mouth. Water is best and she carries some toilet paper in her purse as some public rest rooms tend to run out of this. Thanks for the video and as you get older, people are more understanding on the whole usually. Brush your teeth a lot as well. Your saliva is less so it leaves your mouth dry which causes the cavities to form. Thanks and hi from Canada!
You are awesome. I haven’t been diagnosed with sojourns but I have it big time. I cannot begin to tell you how happy I am to have come across your site. I’m so miserably dry, everywhere even my eyes pain me greatly .
Tips for treating externally is helpful but don't ignore internal treatments too, such as Omega oils, antioxidants, organic castor oil eye packs &/or eye drops & more.
Eat oranges for dry mouth It really works my mouth is so much better not have to drink water every five minutes it makes my tongue feel like normal again.
My doctor did not give me any information regarding SS and I have had to do trial and error for almost 10 years. This is a great video; she knows her stuff and this is worth the time to watch it. Something I found on Amazon is a product XyliMelts for dry mouth. These little pellets let. you stick one on the roof of your mouth and you can speak in public or read to a child or loved one. Xylitol is the ingredient that makes this so easy to use and it can last for up to 1 hour. Great for times when you don't want to chew gum.
I'm so sick of waking up multiple times in the night! I don't get a deep sleep nowadays. I'm watching this at 4:22 and am wide awake. This makes my symptoms worse. Thanks for all the tips!!
I have visual snow syndrome that started at the same time as sjogrens symptoms. I am getting tested for sjogrens monday, but visual snow on top of it is brutal...I love having incurable illnesses! Lol
Thanks for this video. You have made me realize some things that have bothered me for years were probably the Sjogren's.. it all make sense now. The bright headlights, not being able to keep on eye makeup bc eyes feel like sand is in there and you keep rubbing them, the fact that no lotion is the best bc the dry skin is not going to get better, only temporarily relieved with lotion, etc. Thanks again!
Have you tried using coconut oil? Organic, cold pressed. You can either cook with it or just swallow a few teaspoons a day. You can also use it as a moisturizer for skin AND in or on eyes.
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. 💕💜💕😋🌹✌🏻🙏🏻
That dentist seems poorly educated, because if he actually had a proper education he would be well aware of that diseases severely impact teeth. I am so sorry :(
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.
I’m glad for the people who have been able to get diagnosed correctly. My situation is rare, but was able to do a self diagnosis correctly. But I had to wait for 2 years before my doctor believed me, and agreed to do the tests which came back positive. And that’s why I suggest that you do your research on your own. I still have the terrible dry eyes, and joint pains, and is researching natural products to use as I will mot take any biological meds; it will alleviate some problems, but cause more to my overall body..
I use vaseline and the original jergens lotion. It works for me. I use it all over my body and it is moisturized all day. now for my hands I have started using vaseline advanced repair. A little goes a long way. It works. I also use vaseline for my lips....I wish I could put it in my eyes....down my throat, lol. I am finally getting tested this week for sjogren's. Hopefully the eye doctor will recommend to my doctor that I need a rheumatologist to take care of this.
These doctors don't give enough information about all the symptoms of sjogrens. They give you the brochure version. I had to do my own research and talk to people who've had it for a while. I started loosing my hair and didn't know that is also a symptom.
I find my energy is quite low and after one chore I have to stop and rest. Also, I have shortness of breath every time I bend or walk fast. Unfortunately, it has affected my lungs but Im trying as hard as I can to maintain my health as much as possible. You have very good tips and I agree with all of them, especially about the sun. I went to a street fair and two hours later, even with long pants, my legs burned to high hell for s few days. Not fun but I’m fighting it every inch of the way. I always say “I’ll keep doing til I can’t.” Thank you for a good video.
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.
Thanks for this. I am 74 and probably had Sjogrens for decades before being diagnosed. I appreciate your suggestions about the sun. The hydroxychloriquin (plaquinol) super charges sun sensitivity. But it helps with the other symptoms so much, I keep taking it. I have a So found that a modified Keto Diet makes a big difference in how I feel, and the unrefined hemp oil has been a miracle worker.
3 years ago I was diagnosed with Sjogrens, my doctor was quick to add that I also have symptoms of Lupus (tho the test was negative). My rheumy also did nothing for me, except want to give me a cortizone shot for my knee every few months. The exhaustion is the worst.
Aw, well I would def ask for a prescription for Plaquenil, and the AMPK you can order on Amazon. My first rhuematologist didn't put me on anything either so I really recommend finding one that will (or bug your current one). I hope you're able to find some relief!
I was on Ritalin for a while because I couldn't stay awake during day because of how bad the fatigue was, then rheum prescribed me Cymbalta for fibro pain and after taking just once it lifted the fatigue that I was struggling with for so long. Haven't had a problem with that debilitating fatigue since I started the Cymbalta. I'm on plaquenil too and struggling with other symptoms but am so happy to be relieved of that awful fatigue. Maybe it could help you. Also something else that has actually worked for me is a vitamin "Tear support with Maquibright", my dry eye has improved so much.. And it's just a supplement. Good Luck!
I have Sjogrens. It's often linked to thyroid disease and gluten intolerance. When I get a flare ups, I use (Amazon) Sovereign silver drops (used on newborns) to prevent invection and stop the redness. I use natural castor oil at night and liquid MSM (natural sulfur) Gold Standard brand during the day. *Years ago, I started with the better quality/more costly over the counter eye products until I became allergic to preservatives contained in the products. Make sure your castor oil has not gone racid. If you are in a warm area, it probably has. Try additional natural products and see it it helps. It might surprise you ....be well.
I follow all of your tips. Thank you! However, my eye doctor did prescribe albumin eye drops along with restasis and over the counter eye drops, and believe it or not I was able to produce tears. I still can't cry but my eyes get moist. To me the albumin made the biggest difference.
Thank you so much, girly! I know you mentioned coconut oil as a lube, but I just want to advise people to NEVER use an oil-based lube with latex condoms. It gives them a much higher chance of breaking. Awesome video!
I am wondering if this is what I have. All the symptoms fit my life to a tee. I am going to ask my Dr about it. Thanks for the video It's very informative.
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.
Thank you for the great video! It took me years to get a diagnosis, coz all the GP and even the 1st rheumatologist I went to thought I was thinking too much. Thankfully, now I'm with an excellent rheumatologist. Just wanna add one product to your list, if you don't mind. Xylimelts, it is a tablet which has the same active ingredient as Biotene. But it lasts longer than Biotene. My rheumatologist recommended it. One thing I should probably mention is that do read the Direction for Use, coz we should put the tablet between the molar and the cheek. (I certainly didn't read the direction at first, which made me sounded like an idiot when I told my rheumatologist that it was not working for me, especially he knew that I have a degree in pharmacy...)
@@rreddy4640 Hi Reddy, I use eye drops 1st thing every morning when wake up. I've tried 3 eye drops: Systane Ultra, Refresh Tears, Systane Complete. I love Systane Ultra. The other 2 are not good choice for dry eyes due to Sjogren's (in my humble opinion). There is 1 eye gel recommended by the resident of my rheumatologist: Liposic eye gel. I bought one box but keep forgetting trying it. So I'm not sure if it's good or not at this moment.
I use restasis and eye drops and sad at night for my eyes, pilocarpine pills for my mouth, but I only use half of a 5mg tablet at time so my mouth is not overwhelmed with saliva, but I use glycerin, jojoba oil, coconut oil, shea butter, lanolin, and beeswax in various recipes and I make my own chapstick, lotions, and butters. I used very little dove in the shower instead I use coconut oil which is an antibacterial. I make sure that I use cool water to seal it and then when I get out and pat dry I put castor oil on and let it absorb.on many areas I use the light oils and then use the heavy royals to hold it in and I've had to use less lotion that way! And always use gloves. I tried coconut oil in the vaginal area but that hurt as did lube's. But the horrific thing is to skin splits. Now the most aggravating thing is not being able to see very well. Now that I am 60 it seems to be much much worse. I am going to see if my doctor will put me on plaquenil and see how that helps. It is terrible to be have so much pain.
I am 74 yrs old and have Sjorgrens since I was 39. Water dDoesn't help the dryness. You need to try watered fruit juice. I carry waterd down apple juice every where I go. know the sugar is not good for your teeth.
I use organic hexane free castor oil for my dry eyes. Take rositas cod liver oil. My eyes hurt a lot and the nodes hurt a lot too. When using computer gunnars glasses and i use an app on my phone which reduces the blue light.
I too use hexane free castor oil - mostly at night. During the day, I use Gold Standard MSM (natural sulfur) because its a quick fix, not as dense and easy to use.
I have been diagnosed sjogren's syndrome years ago from my tests reports(ANA+ & ENA+) by the rhymaetologist. Further I have been all such problems which have been narrated by you. What is immediate cure for me? Plaquin HCQ or any other?
Have you tried low-dose naltrexone? I was going to ask the doctor about about plaquenil but then I saw LDN and investigated it. Long story short I hope to get my Rx in a day or so.
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.
Hi Thank you so much for your ideas. I have secondary Sjogren's with neuropathy in my hands and feet ( I have virtually no feeling in my feet now ) Love the gloves going to buy some. Cheers Penny Owen ( I am on Facebook too.. )
I think I have this. Share most of your symptoms but curious about one you didn’t mention. For about a month now my tongue and lips feel sunburned!! It’s crazy annoying. Drinking lots of water and also the Biotine helps but the burning never goes away. Have you experienced this or head of it? I also have Hashimotos disease I think it’s time to see a rheumatologist. 🥺
I haven't been diagnosed but have been suspicious I might have this for some time now and the sensation of a burning tongue has been going for quite awhile so I'm curious to see if this is a symptom as well. My doctor ignores me when I ask her to explain why I have this strange symptom.
thank you . this is very helpful. I am in a flare up just now and was so fed up. I am 56 so cant imagine having it so young. awful. i am just about to upload a video on spiritual awakening and the increase in auto immune diseases in sensitive people. I would welcome your thoughts if you have the time? no real answers just posing the questions and hoping for conversation on my channel. I tried Biotene gel today for first time and threw up. good old water for me lol. hate texture xx thank you for this great channel xx
I have it viewers. 1. Have your Eye docs complete the following 3 tests: A. The "TEAR FILM factor." B. The " 5 minute proper Eye Duct test." C. Worst case, " The LIP BIOPSY." 2. Go to an Immunological Doc & have the RO & LA blood tests completed. 3. Rheumatologist will be the place to complete SJOGREN'S diagnose. Best of luck to us all. It more than sucks!!!! Haha P.S. You may( more than likely you will if your docs suck) visit the following before uts diagnosed or have 51 surgeries such as myself: Pain Management, Gastro, Dentistry, Psychologists, ENT, Neurological docs, Cardiovascular(5 heart attacks/Bypass here as well) and more. Other TRUE issues like Type 1 Diabetes, Blood Pressure problems, your entire Heat/Cool sensations will occur, bodily numbness, your entire COGNITIVE will have instability & more & more & more & more. You WILL feel PSYCHOLOGICAL NUTS & they will Diagnose us on the DSM criteria. * I just LIVE this disease. LIVE IT FOLKS.... It will be N my DEMISE! Tammy💙💙💙
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.🛌😴😴🙏💓
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
So before Sjogren's, you could drive at night without headlights bothering you? I haven't been diagnosed or anything yet, but I've had Sjogren's symptoms since I was about 5 or 6. I'm so used to living this way, I don't have anything else to compare to, so I'm having a hard time figuring out what is normal, and what is not.
+lordasaki Oh absolutely, I used to drive at night all the time, I loved it!. Some days I'm actually pretty okay with it, but a lot of the time it can be painful so I wear tinted glasses. When my sjogrens first started up I wore sunglasses in doors some times, so it does seem to fluctuate. I will say that my husband hates night driving and he doesn't have sjogrens, so I think it can really vary from person to person.
+Mrs_Paprika That's so weird, I'm just used to everything being bright and painful. I almost always have my rear-view mirror in the tinted position, but I have to cover the side mirror with my hand...especially with all these newer, brighter headlights (or maybe they just have their brights on?). I guess that might explain why I go outside on a sunny day, and have to "acclimate" with one eye cracked just a little, while everyone else is wide-eyed. I wonder, has Sjogren's affected your eyeglass prescription?
When I was 18 i was diagnose with sjogrens syndrome I was pregnant with my daughter and it caused my daughter to have total heart block, she was also born with 2 holes in her heart, at 3 she was fitted with her first pacemaker, and also had a hole closed up by surgery. I'm 46 now and I'm going through a problem I will explain later. after the birth I noticed a rash on my legs and over time I notice it moved up my body, this rash I found was very sore when touched, or knocked and would cover the whole area it was on, I did worry that I would end up with it on my face. I also have fatigue and need a good 10 hours sleep at night and up to 3 hours sleep during the day, I also have dry eyes and mouth and found sex very uncomfortable. As time went on I had so many problems with my mouth becoming very sore, also had infections and decay in my mouth, lots of tooth ache, it was a real struggle, and over time lost most of my teeth and needed dentures but they don't stay in place with no Saliva, and using a fixadent don't work for long, I struggle for a long time, and in the end only had 2 teeth that met, I found it very hard to eat and swallow, my throat is always sore, and horse and when talking I would spur and my tongue would stick to my mouth. I also noticed I had a lump near my collar bone, and I had it removed and tested, luckily it was not cancer, but it was a worrying time, and it came back, I also found a lump in my cheek (saliva glands) and it was tested and clear of cancer, I also suffers from blocked saliva glands (under my ears) and believe me it is very painful. my eyes became ulcerated were my eyes became so dry, and l struggle with bright lights. I developed arthritis in all my joints and the medication I was prescribed gave me a stomach ulcer I tried so many different medication and I only got worse, until I was put on arcoxia and it was like a miracle the day after I started taking it I had no pain, that was about 15 years ago, my extra stomach acid continued and I was put on different medications, but it was still a problem like some I was not told much, but what I was told was not to have any more children, as the sjogrens syndrome could fight my organs and I could die and the baby could have the same problems as my daughter or worse. I was signed off from my specialist about 13 years ago as he didn't feel he could do anything else for me. To sort the problems with my teeth I have had 12 implants fitted with 7 crowns and bridges, I still have sores in my mouth and gum infections, from time to time , but I would say to anybody to keep your teeth if you can save them. Even with my new teeth I will choke when eating and drinking I still have problems eating talking, swallowing, my throat is always sore also my mouth. I also have sinence problems, and had surgery on my right side and are taking medication for this. But now I'm having problems I noticed my joints started hurting again, my hips ankles, knees, shoulders elbow and hands, so I went to see my GP and had my arcoxia increased but it didnt help, I am also having headaches where my eyes are dry and no pain medication helps , also I am prone to eye infection, my acid has also been worse and am on new medication, I've been back and forwards to my GP and was given steroids and more amitriptyline each time, I'm having problems walking, standing and sitting, as the amitriptyline has been increased my other joints improved but my hips got worse , but now I'm having problems with my breathing so more steroids and antibiotics, but my breathing was getting worse when I finished the course until I was unable to work and was admitted to hospital with an oxygen level of 77. I now have been diagnose with ILD Interstitial lung disease. ILD is an illness that i have to learn to live with. It will get worse and I will need oxygen to breath. This is still early days and I need to find out more about ILD.
M doing natural healing ...i always drink warm water,,, and I always use turmeric powder and black pepper together mix it well in a warm water and take it... It relieves me,,, I take natural antioxidants and eat fermented food I m improving continuously,,, fermented food reduces my food sensitivities and natural antioxidants improves my inflammation,, I always use apple cider vinegar and m getting better and better... Hope you will fight well and recover
I actually haven't noticed any side effects thankfully. Armpit swelling could be swollen lymph nodes, thats certainly common with autoimmune diseases. Normally when mine swell its because my body is trying to fight off a virus. I just make sure to drink a lot of tea with echinacea and dandelion root:)
Alma Hernandez oh man, to be honest it's hard to remember but I don't think it was much worse. I actually made vlogs during my pregnancy so it might be helpful to check those out! The worse part is definitely after they're born, but I'm sure lack of sleep didn't help either.
I had to give up my entire career and independence when I was diagnosed at 29 with primary sjogrens syndrome with extra glandular activities (basically it also attacks my internal organs. I was a theatrical carpenter on tour with Feld Entertainment's Disney on Ice. It hit me very suddenly when we were on a month long gig in Mexico. Four days into the gig my feet, ankles, and legs swelled up to the point I couldn't walk. After Mexico, I had a month off before starting the west coast tour. Went to my Rhuem and she did some blood tests. My sjogrens levels were off the chart, literally. The measurement goes from 0 to 100 and I'm 100+. I was extremely fortunate that it was discovered so quickly and my rhuem put me on plaquinel a day before I left for West Coast tour. First day I started throwing up every 10-15minutes non-stop,making work impossible. Came to realize I am extremely allergic to the med that helps so many people in our condition.
The reason I'm saying this is because I'm sure there are others out there who have found for one reason or another that plaqunil doesn't work for them. Instead, my rhuem put me on Methotrexate (which you can take my shot [which I do because it's easier on the stomach] or 8 pills once a week). It is a chemo, all be a light one, but it can cause some of your hair fall out. I was also put on Enbrel, another once a week shot. Those took the place of plaquinil for me and are my main two meds although I take a number of others. I'm lucky to not have to deal with dry eyes not so much, but dry mouth, yes. I dislike drinking regular water so I drink Propel like a women marooned in the desert everyday. There's several different flavors and it's just regular water with flavoring, electrolytes, and vitamins. You can get it at your local store. I get it in Wal-Mart in the water isle and get it by the case full. Along with Biotene mouthwash, there's also toothpaste and other products. Use them!!
+Skull Kitty Thank you so much for sharing that!! That's the first I've heard of someone being allergic to it, I can't imagine how frustrating that must have been. I'm so glad you've got a system that helps now and that definitely gives hope to others who might not respond well to plaquenil:)
They help with dry mouth SO much! Plus you have to keep up with your dental hygiene because dry mouth can cause your teeth to rot and crumble. Despite my best efforts, I've had to have 4 teeth removed and still have to get a 5th. I'm only 32. Gum can also help, as Paprika says. I also carry suger-free candy or lozenges to suck on if I forgot my water. This tip is for women: Keep up with your OBG/YN check-ups plus some. Also request a blood test to go over your hormone levels after every 6 months. Sjogrens is a chronic disease that can also wick away moisture from around your internal organs. With me, my brain decided to take matters into it's own hands to keep me from potentially killing myself - it's shut down my reproductive system. I stopped getting my period a little over a year ago (which, I'll admit, is kind of awesome not having) but only recently decided to try and figure out why.
(I apologize for the lengthy post. I just want others to know what else can help and what they should be aware of.) There's 2 scenerios. 1) Your brain's telling you to reproduce but your ovaries are giving it the middle finger. This is dangerous and can cause uterine cancer. There is a medication that your doc can give you that you take for 10 days and about 7-10days after you finish it, you get your period. This prevents the cancer because you shed the wall of your uterus and therefore it doesn't build up. 2) Like in my case, your brain realizes that getting pregnant would be very dangerous and in some cases, deadly to both you and the baby. Yes, the thought of not even having the option of having kids is depressing as all get out, but your health needs to come first. I have a bunch more tips but I'll end it there. Also, these are extreme cases. Like I said, I have Primary Sjogrens disease (and secondary Fibro & RA) and am disabled b/c of it. Stay healthy, sane, and safe.
+Mrs_Paprika Thank YOU for sharing your experiences with Sjogrens and educating people about it. Every time I have to go to the hosp for a flare, I constantly have to explain what it is. Thought about making fliers it happens so often. But I'm happy to try and educate others. I don't have the balls to make sjogrens awareness videos (even if I knew how to use TH-cam) plus I've kept my condition very much on the down low. I applaud you lady! Thx so much for these vids. Keep 'em comin'. It also nice to know that there are other women around my age that has it too. I always feel very much alone b/c I know no one IRL that has it. Thanks again!!
I have a question: When I wake up in the morning I have a dry throat and mouth, my hands are swollen and sweaty, I’m not rested at all and my joints hurt as hell and I’m extremely stiff. Also my eyes are dry and hurt. However the dryness goes away over the day when I drink something, only the swollen hands and joint pain stays and fluctuates. I’m tired all day every day! No energy at all! I do have dental problems and had candida infection. My skin is definitely on the dry side and peels and cracks, especially in my face...What do you guys think? I’m so clueless and I hate going to sleep... help
+Pixidust Wind My husbands family is from WV! Small world:) Yeah Sjogrens and Fibro seem to often go hand in hand, and it can be hard to tell sometimes if I'm having a flare up from one or the other. Let me know how your test goes!
I feel way better in the sun as long as I also do sunscreen. Without sunscreen it feels like my skin is too close to a big fire. I have seasonal affective disorder and I notice a huge improvement when the sun shines in early spring, despite me taking vitamin d religiously in winter.
@@Call-me-Al I always wear sunscreen too. It's just good for your skin. I get so depressed in the winter. I have SAD for sure. I can take vitamin D, and I do, but it isn't doing what natural sunlight does. If it did, my nails would be growing in the winter with the vitamin D, however, they don't. But once it's summer, they begin to grow just like all living things. I am now trying LDN (low dose naltrexone) for Sjogren's. Check it out. It brings down the high SED rate and inflammation, and some people have reported getting saliva back although it is not tauted for doing that. It's just much less side effects then let's say steroids or Plaquenil or heavier drugs. No side effects but vivid dreaming, and some other mild ones.
Thanks. A real person talking about what matters to us SS sufferers. Thanks again.
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.
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!
Are you using the standard hydrogen peroxide in the brown bottle straight? Or are you watering it down? Or another type altogether. Thanks!
@@NB-Philly yes. I do not dilute, just brush, swish and rinse. Do not swallow.
@@JG-ph3xg thank you so much! I’m going to give it a try!
Thank you 🙏
Thank you. I was just recently diagnosed and frankly your video was more helpful than any of my doctors or anything I have found online!
One of the biggest issues I have had has been my eyes . Because of extreme dryness I have done damage to my cornea in both eyes. I have also had serious eye infections. So take care of your eyes . Dry eyes is nothing to take lightly.
I use different kinds of natural drops depending on the need. When I wake up and my eyes are super inflamed, I will use (AMAZON) Sovereign Silver drops (used on newborn babies) and it stops the red. I over used over the counter drops after developing allergic reaction to preservatives in eye drops. MSM liquid (health food store) is an alternative and hexane free castor oil (used in prescription eye products) as an eye drop at night. Hope it helps.
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
Likewise. 68. All I learn is online. Came on slow about two years ago then sped up. I can barely taste food. Also find the biotiene mouth rinse consistently give me a little saliva right after and then I wake up totally dried out middle of night. Makes it worse.
Me too , I am 62 never heard before for this Sjogrens syndrome , I was very sick until they diagnosed me
🙏
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 was diagnosed 8 years ago. Just last year I started getting sickly, I have migraines with body aches, dry eyes, nose, mouth, I lost pretty much all my teeth. I was never followed along with blood work, untill I got ill. My blood work came back up to 300, was put on hydroxy chloroquine, gabapeptin. 18 years ago, I also was diagnosed with hypothyroidism. They blamed that untill I got sick. Now I feel so crummy. But I have not lost faith or hope, I am willing to try out new things to help me feel better.
Oh I'm so sorry to hear that, I've certainly been lucky in the severity of my symptoms. Have you found any improvement since starting the medications?
@@LauraauroraYT Hello there~ I suspect Sjogren'n, would like it ruled out. I'm 65, have been dealing with super scratchy dry eyes mainly in the morning for over at least 20 years with very overactive eye "boogies" and bloodshot eyes, blurry vision worse in morning and improves as day goes on, super sensitive to lights-especially bright or flashing, a very dry mouth and throat, very dry skin in last 10-15 years (very oily before then), fibromyalgia diagnosed in 1995, 3-4 migraines a week on awakening or right before bed, cramping hands/feet, wrists ache, feet burn and tingle but are definitely not numb (not diabetic). Vaginal dryness and burning even without a man in my life for 20+ years (had recent normal pap other dry tissue). Recent diagnosed ventricular tachycardia that occurs at least daily.
Have had anxiety in my life so my doctor blames everything on anxiety, doesn't test me for anything unless I request it after seeing videos like this one.
What blood work or other test did you have to determine your diagnosis? I would like to have Sjogren's ruled out. Thank you much.
For anyone experiencing these symptoms, I struggled with this syndrome for years with severe dry mouth, dry eyes, dry nose with nose bleeds, brain fog, insomnia, stomach issues, etc and after going on a zero carb carnivore diet it completely cured all symptoms. I realized after introducing foods back in that gluten and wheat where the main culprits but sugar seemed to worsen it as well. I had also gone on a keto diet since then which seemed to help but not as much as a completely zero carb diet.
hi. I also find keto diet helpful. Gluten, lactose and all types of sugar definately make it worse. Another good thing is consuming more fats helps to fight dryness. More things that work for me. I have troubles with lotions and washing liquids: they irritate both skin and respiratory system. So I always wash my skin with quality olive soap. Also please try to get good sleep and eliminate stress from your life. Yoga helps a lot, too.
I was diagnosed with Sjogrens 5 years along with SLE a form of Lupus. It's super tough, my son will be turning 3 soon and I can barely keep up with the little guy.
Thank you sweetheart for doing this video, hope you have more good days than bad. Xoxo
MillMills. ASMR Rd
Check out Dr. Brooke Goldner"s books(Goodbe Lupus and Goodby Autoimmune) watch her videos on utube. She has a protocol rapid recovery.
Most helpful Sjogren's video on the interwebs! Thank you :)
+zennmomma Aw thanks!!
zennmomma please what is the pest for dry mouth..!
.I don't find in my country.
.do u now any product from Amazon or herbal. GNC?????
Mrs_Paprika please what is the pest for dry mouth???..!
.I don't find in my country.
.do u now any product from Amazon or herbal. GNC?????please answer I am sufuriiiiing🙇
I had to quit smoking of course. The Nicorette Gum helps dry mouth for me. She suggested Orbit Gum.
Few more tips ~ my wife keeps one of those big syringes by the bed full of fresh water (it is one of those turkey basting syringes from the dollar store ~ not a dropper type turkey baster, but the one that you can inject the butter into ~ just remove the needle part (ouch) ~ at night she can squirt some water in her mouth instead of having to sit up every time she wakes up with a dry mouth/ throat ~ also great using this, as she is a nasal CPAP user which the syringe works great getting right to her mouth. As for Ketchup we only use one type and my wife was the one who asked Heinz years ago to make and is now on the market ~ Heinz has a No Added Sugar Ketchup out there ~ Sold at Walmart, Loblaws, some health food stores, and carb free stores. As for Plaquenil (Generic name: Hydroxycholoroquine) it is a suppressant drug that is normally used for Malaria to suppress the immune system. It has a ton of side effects and my wife can not tolerate it. The side effects were worse than having the symptoms. It takes 3 months for Hydroxychloroquine to work and another 3 months for it to come out of your system. Great Video and surprised to see my wife uses the same Bausch & Lomb "Soothe" eye drops and the gel (she uses at night time). Keep the sugar out of your mouth. Water is best and she carries some toilet paper in her purse as some public rest rooms tend to run out of this. Thanks for the video and as you get older, people are more understanding on the whole usually. Brush your teeth a lot as well. Your saliva is less so it leaves your mouth dry which causes the cavities to form. Thanks and hi from Canada!
omg yes! sjögrens suuuuucckkks. I just made a video on makeup tips to adjust to the dryness. your tips are super helpful!! Thank you
You are awesome. I haven’t been diagnosed with sojourns but I have it big time. I cannot begin to tell you how happy I am to have come across your site. I’m so miserably dry, everywhere even my eyes pain me greatly .
Tips for treating externally is helpful but don't ignore internal treatments too, such as Omega oils, antioxidants, organic castor oil eye packs &/or eye drops & more.
Eat oranges for dry mouth It really works my mouth is so much better not have to drink water every five minutes it makes my tongue feel like normal again.
You are an inspiration. I have sjogrens syndrome and can relate to all you say. You explain symptoms well and thanks for the tips!
Thank for this! I was just diagnosed and this is the most helpful video I've found so far.
My doctor did not give me any information regarding SS and I have had to do trial and error for almost 10 years. This is a great video; she knows her stuff and this is worth the time to watch it. Something I found on Amazon is a product XyliMelts for dry mouth. These little pellets let. you stick one on the roof of your mouth and you can speak in public or read to a child or loved one. Xylitol is the ingredient that makes this so easy to use and it can last for up to 1 hour. Great for times when you don't want to chew gum.
I'm so sick of waking up multiple times in the night! I don't get a deep sleep nowadays. I'm watching this at 4:22 and am wide awake. This makes my symptoms worse. Thanks for all the tips!!
Thanks for this video I was recently diagnosed and these tips sure come in handy
I have visual snow syndrome that started at the same time as sjogrens symptoms. I am getting tested for sjogrens monday, but visual snow on top of it is brutal...I love having incurable illnesses! Lol
I love the gloves. I wish I had worn them all my life. I am in my 70’s and my fore arms look like they are 100 years old.
Thanks alot ! Great job ! My daughter has this disease, your tips are appreciated !
Thanks for this video. You have made me realize some things that have bothered me for years were probably the Sjogren's.. it all make sense now. The bright headlights, not being able to keep on eye makeup bc eyes feel like sand is in there and you keep rubbing them, the fact that no lotion is the best bc the dry skin is not going to get better, only temporarily relieved with lotion, etc. Thanks again!
Have you tried using coconut oil? Organic, cold pressed. You can either cook with it or just swallow a few teaspoons a day. You can also use it as a moisturizer for skin AND in or on eyes.
I was given DoubleBase by my GP, and it's worked wonders for my skin, it really helped x
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. 💕💜💕😋🌹✌🏻🙏🏻
That dentist seems poorly educated, because if he actually had a proper education he would be well aware of that diseases severely impact teeth. I am so sorry :(
My rheumatologist told me nothing. Thank you.
Really useful to hear these practical tips. This was seven years ago now, could you give us an update please?
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.
Thank you so much for sharing I was just diagnosed and this was very helpful 😀
Best video ever-VERY HELPFUL
I am in the process of getting diagnosed right now and I appreciate your tips!
We have to use lotions without alcohol. Very important.
I’m glad for the people who have been able to get diagnosed correctly. My situation is rare, but was able to do a self diagnosis correctly. But I had to wait for 2 years before my doctor believed me, and agreed to do the tests which came back positive. And that’s why I suggest that you do your research on your own. I still have the terrible dry eyes, and joint pains, and is researching natural products to use as I will mot take any biological meds; it will alleviate some problems, but cause more to my overall body..
Thank you, I did too because nobody believed me for almost 1 year , the last neurologist after a lot a tests she diagnosed me with this syndrome
I use vaseline and the original jergens lotion. It works for me. I use it all over my body and it is moisturized all day. now for my hands I have started using vaseline advanced repair. A little goes a long way. It works. I also use vaseline for my lips....I wish I could put it in my eyes....down my throat, lol. I am finally getting tested this week for sjogren's. Hopefully the eye doctor will recommend to my doctor that I need a rheumatologist to take care of this.
These doctors don't give enough information about all the symptoms of sjogrens. They give you the brochure version. I had to do my own research and talk to people who've had it for a while. I started loosing my hair and didn't know that is also a symptom.
I find my energy is quite low and after one chore I have to stop and rest. Also, I have shortness of breath every time I bend or walk fast. Unfortunately, it has affected my lungs but Im trying as hard as I can to maintain my health as much as possible. You have very good tips and I agree with all of them, especially about the sun. I went to a street fair and two hours later, even with long pants, my legs burned to high hell for s few days. Not fun but I’m fighting it every inch of the way. I always say “I’ll keep doing til I can’t.” Thank you for a good video.
thanks for the tips!
I have sunglasses 24/7 since I have transitions and they’re so helpful
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.
Thanks for this. I am 74 and probably had Sjogrens for decades before being diagnosed. I appreciate your suggestions about the sun. The hydroxychloriquin (plaquinol) super charges sun sensitivity. But it helps with the other symptoms so much, I keep taking it. I have a
So found that a modified Keto Diet makes a big difference in how I feel, and the unrefined hemp oil has been a miracle worker.
Thank you for this, I always feel so alone in this.
3 years ago I was diagnosed with Sjogrens, my doctor was quick to add that I also have symptoms of Lupus (tho the test was negative). My rheumy also did nothing for me, except want to give me a cortizone shot for my knee every few months. The exhaustion is the worst.
+Jen Hawks Have they got you on Plaquenil? That plus the AMPK Activator have really helped with my fatique, though its certainly still there.
They have me on nothing for it. They also just give me a pain pill for my neuropathy, nothing to actually help it.
Aw, well I would def ask for a prescription for Plaquenil, and the AMPK you can order on Amazon. My first rhuematologist didn't put me on anything either so I really recommend finding one that will (or bug your current one). I hope you're able to find some relief!
I was on Ritalin for a while because I couldn't stay awake during day because of how bad the fatigue was, then rheum prescribed me Cymbalta for fibro pain and after taking just once it lifted the fatigue that I was struggling with for so long. Haven't had a problem with that debilitating fatigue since I started the Cymbalta. I'm on plaquenil too and struggling with other symptoms but am so happy to be relieved of that awful fatigue. Maybe it could help you.
Also something else that has actually worked for me is a vitamin "Tear support with Maquibright", my dry eye has improved so much.. And it's just a supplement.
Good Luck!
Great job explaining
I have this too
Awesome video Thanks
Enjoyed your presentation, it helped a lot. God bless you,
great tips! thank you!
+sharleeism Ah thank you!!
Thank you so much!! you have really help me with this video!!
thank you for this information thank you and have a nice day
Thanks for your video. It's well explained. Please do follow up videos and updates about Sjogrens issues and Solutions. It impacts highly.
Thanks🙏
I have Sjogrens. It's often linked to thyroid disease and gluten intolerance. When I get a flare ups, I use (Amazon) Sovereign silver drops (used on newborns) to prevent invection and stop the redness. I use natural castor oil at night and liquid MSM (natural sulfur) Gold Standard brand during the day. *Years ago, I started with the better quality/more costly over the counter eye products until I became allergic to preservatives contained in the products. Make sure your castor oil has not gone racid. If you are in a warm area, it probably has. Try additional natural products and see it it helps. It might surprise you ....be well.
You really helped me , thanks Sandy
I follow all of your tips. Thank you! However, my eye doctor did prescribe albumin eye drops along with restasis and over the counter eye drops, and believe it or not I was able to produce tears. I still can't cry but my eyes get moist. To me the albumin made the biggest difference.
Thank you so much, girly! I know you mentioned coconut oil as a lube, but I just want to advise people to NEVER use an oil-based lube with latex condoms. It gives them a much higher chance of breaking. Awesome video!
I am wondering if this is what I have. All the symptoms fit my life to a tee. I am going to ask my Dr about it. Thanks for the video It's very informative.
Night driving omg me too!
Thanks for the tide bits...
Your gloves are amazing.
I’m actually best in the sun and heat. I dont burn easily, just normal but love the sun and love the humidity.
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.
Thank you for the great video! It took me years to get a diagnosis, coz all the GP and even the 1st rheumatologist I went to thought I was thinking too much. Thankfully, now I'm with an excellent rheumatologist.
Just wanna add one product to your list, if you don't mind. Xylimelts, it is a tablet which has the same active ingredient as Biotene. But it lasts longer than Biotene. My rheumatologist recommended it. One thing I should probably mention is that do read the Direction for Use, coz we should put the tablet between the molar and the cheek. (I certainly didn't read the direction at first, which made me sounded like an idiot when I told my rheumatologist that it was not working for me, especially he knew that I have a degree in pharmacy...)
Hi Shu Wang
What do you use for severe dryeyes? I have sjogrens. Looking for good Drops and gel.
@@rreddy4640 Hi Reddy, I use eye drops 1st thing every morning when wake up. I've tried 3 eye drops: Systane Ultra, Refresh Tears, Systane Complete. I love Systane Ultra. The other 2 are not good choice for dry eyes due to Sjogren's (in my humble opinion). There is 1 eye gel recommended by the resident of my rheumatologist: Liposic eye gel. I bought one box but keep forgetting trying it. So I'm not sure if it's good or not at this moment.
I have a lot of these symptoms but I also have dizziness and trouble thinking. Has anyone experienced these.
I use restasis and eye drops and sad at night for my eyes, pilocarpine pills for my mouth, but I only use half of a 5mg tablet at time so my mouth is not overwhelmed with saliva, but I use glycerin, jojoba oil, coconut oil, shea butter, lanolin, and beeswax in various recipes and I make my own chapstick, lotions, and butters. I used very little dove in the shower instead I use coconut oil which is an antibacterial. I make sure that I use cool water to seal it and then when I get out and pat dry I put castor oil on and let it absorb.on many areas I use the light oils and then use the heavy royals to hold it in and I've had to use less lotion that way! And always use gloves. I tried coconut oil in the vaginal area but that hurt as did lube's. But the horrific thing is to skin splits. Now the most aggravating thing is not being able to see very well. Now that I am 60 it seems to be much much worse. I am going to see if my doctor will put me on plaquenil and see how that helps. It is terrible to be have so much pain.
Thank you for your helpful tips.
Agreed with everything , though water does not help much.
So true, water makes me more dry... Oil however helps.
Water alone seems to dry the back of my throat..so odd.
I do still drink lots of water.
I am 74 yrs old and have Sjorgrens since I was 39. Water dDoesn't help the dryness. You need to try watered fruit juice. I carry waterd down apple juice every where I go. know the sugar is not good for your teeth.
@@patriciamoon6334 Gatorade or similar???
Hi! A month ago I had diagnosed with Sjogrens. Can you cry tears? I don't.
I use organic hexane free castor oil for my dry eyes. Take rositas cod liver oil. My eyes hurt a lot and the nodes hurt a lot too. When using computer gunnars glasses and i use an app on my phone which reduces the blue light.
I too use hexane free castor oil - mostly at night. During the day, I use Gold Standard MSM (natural sulfur) because its a quick fix, not as dense and easy to use.
Very helpful, thanks!
Thank you for this information!
I have been diagnosed sjogren's syndrome years ago from my tests reports(ANA+ & ENA+) by the rhymaetologist. Further I have been all such problems which have been narrated by you. What is immediate cure for me? Plaquin HCQ or any other?
Have you tried low-dose naltrexone? I was going to ask the doctor about about plaquenil but then I saw LDN and investigated it. Long story short I hope to get my Rx in a day or so.
Thank you.
Thanks for the information.
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.
Thanks. This video was very helpful.
Hi Thank you so much for your ideas. I have secondary Sjogren's with neuropathy in my hands and feet ( I have virtually no feeling in my feet now ) Love the gloves going to buy some. Cheers Penny Owen ( I am on Facebook too.. )
What about diet foods? I was just recently diagnosed and are still trying to learn about it :)
Thanks
thanks for the video needed it.
Great info thanks I needed this vid!
You look so healthy. You are glowing, dear.
Good video thanks and good luck
I think I have this. Share most of your symptoms but curious about one you didn’t mention. For about a month now my tongue and lips feel sunburned!! It’s crazy annoying. Drinking lots of water and also the Biotine helps but the burning never goes away. Have you experienced this or head of it? I also have Hashimotos disease I think it’s time to see a rheumatologist. 🥺
I haven't been diagnosed but have been suspicious I might have this for some time now and the sensation of a burning tongue has been going for quite awhile so I'm curious to see if this is a symptom as well. My doctor ignores me when I ask her to explain why I have this strange symptom.
thank you . this is very helpful. I am in a flare up just now and was so fed up. I am 56 so cant imagine having it so young. awful. i am just about to upload a video on spiritual awakening and the increase in auto immune diseases in sensitive people. I would welcome your thoughts if you have the time? no real answers just posing the questions and hoping for conversation on my channel. I tried Biotene gel today for first time and threw up. good old water for me lol. hate texture xx thank you for this great channel xx
Yes in sensitive people this illness is more why????
Thank you dear
I have it viewers.
1. Have your Eye docs complete the following 3 tests:
A. The "TEAR FILM factor."
B. The " 5 minute proper Eye Duct test."
C. Worst case,
" The LIP BIOPSY."
2. Go to an Immunological Doc & have the RO & LA blood tests completed.
3. Rheumatologist will be the place to complete SJOGREN'S diagnose.
Best of luck to us all.
It more than sucks!!!! Haha
P.S. You may( more than likely you will if your docs suck) visit the following before uts diagnosed or have 51 surgeries such as myself:
Pain Management, Gastro, Dentistry, Psychologists, ENT, Neurological docs, Cardiovascular(5 heart attacks/Bypass here as well) and more.
Other TRUE issues like Type 1 Diabetes, Blood Pressure problems, your entire Heat/Cool sensations will occur, bodily numbness, your entire COGNITIVE will have instability & more & more & more & more.
You WILL feel PSYCHOLOGICAL NUTS & they will Diagnose us on the DSM criteria.
* I just
LIVE this disease. LIVE IT FOLKS....
It will be N my DEMISE!
Tammy💙💙💙
Thank you 🙏
Thank you for this video and all the information. I carry chapstick, water and lotion everywhere.
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.🛌😴😴🙏💓
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
thank you so much you are lovely
So before Sjogren's, you could drive at night without headlights bothering you?
I haven't been diagnosed or anything yet, but I've had Sjogren's symptoms since I was about 5 or 6. I'm so used to living this way, I don't have anything else to compare to, so I'm having a hard time figuring out what is normal, and what is not.
+lordasaki Oh absolutely, I used to drive at night all the time, I loved it!. Some days I'm actually pretty okay with it, but a lot of the time it can be painful so I wear tinted glasses. When my sjogrens first started up I wore sunglasses in doors some times, so it does seem to fluctuate.
I will say that my husband hates night driving and he doesn't have sjogrens, so I think it can really vary from person to person.
+Mrs_Paprika That's so weird, I'm just used to everything being bright and painful. I almost always have my rear-view mirror in the tinted position, but I have to cover the side mirror with my hand...especially with all these newer, brighter headlights (or maybe they just have their brights on?). I guess that might explain why I go outside on a sunny day, and have to "acclimate" with one eye cracked just a little, while everyone else is wide-eyed.
I wonder, has Sjogren's affected your eyeglass prescription?
When I was 18 i was diagnose with sjogrens syndrome I was pregnant with my daughter and it caused my daughter to have total heart block, she was also born with 2 holes in her heart, at 3 she was fitted with her first pacemaker, and also had a hole closed up by surgery. I'm 46 now and I'm going through a problem I will explain later.
after the birth I noticed a rash on my legs and over time I notice it moved up my body, this rash I found was very sore when touched, or knocked and would cover the whole area it was on, I did worry that I would end up with it on my face. I also have fatigue and need a good 10 hours sleep at night and up to 3 hours sleep during the day, I also have dry eyes and mouth and found sex very uncomfortable.
As time went on I had so many problems with my mouth becoming very sore, also had infections and decay in my mouth, lots of tooth ache, it was a real struggle, and over time lost most of my teeth and needed dentures but they don't stay in place with no Saliva, and using a fixadent don't work for long, I struggle for a long time, and in the end only had 2 teeth that met, I found it very hard to eat and swallow, my throat is always sore, and horse and when talking I would spur and my tongue would stick to my mouth.
I also noticed I had a lump near my collar bone, and I had it removed and tested, luckily it was not cancer, but it was a worrying time, and it came back, I also found a lump in my cheek (saliva glands) and it was tested and clear of cancer, I also suffers from blocked saliva glands (under my ears) and believe me it is very painful.
my eyes became ulcerated were my eyes became so dry, and l struggle with bright lights. I developed arthritis in all my joints and the medication I was prescribed gave me a stomach ulcer I tried so many different medication and I only got worse, until I was put on arcoxia and it was like a miracle the day after I started taking it I had no pain, that was about 15 years ago, my extra stomach acid continued and I was put on different medications, but it was still a problem
like some I was not told much, but what I was told was not to have any more children, as the sjogrens syndrome could fight my organs and I could die and the baby could have the same problems as my daughter or worse.
I was signed off from my specialist about 13 years ago as he didn't feel he could do anything else for me.
To sort the problems with my teeth I have had 12 implants fitted with 7 crowns and bridges, I still have sores in my mouth and gum infections, from time to time , but I would say to anybody to keep your teeth if you can save them. Even with my new teeth I will choke when eating and drinking I still have problems eating talking, swallowing, my throat is always sore also my mouth.
I also have sinence problems, and had surgery on my right side and are taking medication for this.
But now I'm having problems I noticed my joints started hurting again, my hips ankles, knees, shoulders elbow and hands, so I went to see my GP and had my arcoxia increased but it didnt help, I am also having headaches where my eyes are dry and no pain medication helps , also I am prone to eye infection, my acid has also been worse and am on new medication, I've been back and forwards to my GP and was given steroids and more amitriptyline each time, I'm having problems walking, standing and sitting, as the amitriptyline has been increased my other joints improved but my hips got worse , but now I'm having problems with my breathing so more steroids and antibiotics, but my breathing was getting worse when I finished the course until I was unable to work and was admitted to hospital with an oxygen level of 77. I now have been diagnose with ILD Interstitial lung disease. ILD is an illness that i have to learn to live with. It will get worse and I will need oxygen to breath. This is still early days and I need to find out more about ILD.
M doing natural healing ...i always drink warm water,,, and I always use turmeric powder and black pepper together mix it well in a warm water and take it... It relieves me,,, I take natural antioxidants and eat fermented food I m improving continuously,,, fermented food reduces my food sensitivities and natural antioxidants improves my inflammation,, I always use apple cider vinegar and m getting better and better... Hope you will fight well and recover
I don't take the Plaquenil. too many scary side effects. do you have any? Thanks for all the tips. im 45. do you have any swelling of the arm pit
I actually haven't noticed any side effects thankfully. Armpit swelling could be swollen lymph nodes, thats certainly common with autoimmune diseases. Normally when mine swell its because my body is trying to fight off a virus. I just make sure to drink a lot of tea with echinacea and dandelion root:)
The advice is NOT to take things to boost your immune system (such as echinacea) as in AS we already have an overactive immune system.
Good video
I found out i have it about 1 year ago .. I wajt to conceive how was your experience being pregnant was it worse dry mouth
Alma Hernandez oh man, to be honest it's hard to remember but I don't think it was much worse. I actually made vlogs during my pregnancy so it might be helpful to check those out! The worse part is definitely after they're born, but I'm sure lack of sleep didn't help either.
I had to give up my entire career and independence when I was diagnosed at 29 with primary sjogrens syndrome with extra glandular activities (basically it also attacks my internal organs. I was a theatrical carpenter on tour with Feld Entertainment's Disney on Ice. It hit me very suddenly when we were on a month long gig in Mexico. Four days into the gig my feet, ankles, and legs swelled up to the point I couldn't walk. After Mexico, I had a month off before starting the west coast tour. Went to my Rhuem and she did some blood tests. My sjogrens levels were off the chart, literally. The measurement goes from 0 to 100 and I'm 100+.
I was extremely fortunate that it was discovered so quickly and my rhuem put me on plaquinel a day before I left for West Coast tour. First day I started throwing up every 10-15minutes non-stop,making work impossible. Came to realize I am extremely allergic to the med that helps so many people in our condition.
The reason I'm saying this is because I'm sure there are others out there who have found for one reason or another that plaqunil doesn't work for them. Instead, my rhuem put me on Methotrexate (which you can take my shot [which I do because it's easier on the stomach] or 8 pills once a week). It is a chemo, all be a light one, but it can cause some of your hair fall out. I was also put on Enbrel, another once a week shot. Those took the place of plaquinil for me and are my main two meds although I take a number of others.
I'm lucky to not have to deal with dry eyes not so much, but dry mouth, yes. I dislike drinking regular water so I drink Propel like a women marooned in the desert everyday. There's several different flavors and it's just regular water with flavoring, electrolytes, and vitamins. You can get it at your local store. I get it in Wal-Mart in the water isle and get it by the case full. Along with Biotene mouthwash, there's also toothpaste and other products. Use them!!
+Skull Kitty Thank you so much for sharing that!! That's the first I've heard of someone being allergic to it, I can't imagine how frustrating that must have been. I'm so glad you've got a system that helps now and that definitely gives hope to others who might not respond well to plaquenil:)
They help with dry mouth SO much! Plus you have to keep up with your dental hygiene because dry mouth can cause your teeth to rot and crumble. Despite my best efforts, I've had to have 4 teeth removed and still have to get a 5th. I'm only 32. Gum can also help, as Paprika says. I also carry suger-free candy or lozenges to suck on if I forgot my water.
This tip is for women: Keep up with your OBG/YN check-ups plus some. Also request a blood test to go over your hormone levels after every 6 months. Sjogrens is a chronic disease that can also wick away moisture from around your internal organs. With me, my brain decided to take matters into it's own hands to keep me from potentially killing myself - it's shut down my reproductive system. I stopped getting my period a little over a year ago (which, I'll admit, is kind of awesome not having) but only recently decided to try and figure out why.
(I apologize for the lengthy post. I just want others to know what else can help and what they should be aware of.)
There's 2 scenerios. 1) Your brain's telling you to reproduce but your ovaries are giving it the middle finger. This is dangerous and can cause uterine cancer. There is a medication that your doc can give you that you take for 10 days and about 7-10days after you finish it, you get your period. This prevents the cancer because you shed the wall of your uterus and therefore it doesn't build up. 2) Like in my case, your brain realizes that getting pregnant would be very dangerous and in some cases, deadly to both you and the baby. Yes, the thought of not even having the option of having kids is depressing as all get out, but your health needs to come first.
I have a bunch more tips but I'll end it there. Also, these are extreme cases. Like I said, I have Primary Sjogrens disease (and secondary Fibro & RA) and am disabled b/c of it. Stay healthy, sane, and safe.
+Mrs_Paprika Thank YOU for sharing your experiences with Sjogrens and educating people about it. Every time I have to go to the hosp for a flare, I constantly have to explain what it is. Thought about making fliers it happens so often. But I'm happy to try and educate others. I don't have the balls to make sjogrens awareness videos (even if I knew how to use TH-cam) plus I've kept my condition very much on the down low. I applaud you lady! Thx so much for these vids. Keep 'em comin'. It also nice to know that there are other women around my age that has it too. I always feel very much alone b/c I know no one IRL that has it. Thanks again!!
I have a question: When I wake up in the morning I have a dry throat and mouth, my hands are swollen and sweaty, I’m not rested at all and my joints hurt as hell and I’m extremely stiff. Also my eyes are dry and hurt. However the dryness goes away over the day when I drink something, only the swollen hands and joint pain stays and fluctuates. I’m tired all day every day! No energy at all! I do have dental problems and had candida infection. My skin is definitely on the dry side and peels and cracks, especially in my face...What do you guys think? I’m so clueless and I hate going to sleep... help
You might want to take a plunge and get a complete blood work up to rules to rule a few things out and narrow down your issue.
The reason why biotene is so good for the mouth..is because our body is lacking vitamin b7 which is called(biotin)
hey I live in WV !
My eye doctor told me to get tested for this disorder...i already have fibro...so im pretty nervous to get tested
+Pixidust Wind My husbands family is from WV! Small world:) Yeah Sjogrens and Fibro seem to often go hand in hand, and it can be hard to tell sometimes if I'm having a flare up from one or the other. Let me know how your test goes!
What was the eye drop u suggested
Information will help you. Really!
I have Sjogren's and actually I feel so much better when I lay out in the sun.
yessss omggg sunbathing is life for me 🥰 it helps so much..
Vitamin D is a great treatment for any autoimmune symptoms
@@ramonafrances4364 yes, I am mega dosing and I feel so much better ❤️
I feel way better in the sun as long as I also do sunscreen. Without sunscreen it feels like my skin is too close to a big fire. I have seasonal affective disorder and I notice a huge improvement when the sun shines in early spring, despite me taking vitamin d religiously in winter.
@@Call-me-Al I always wear sunscreen too. It's just good for your skin. I get so depressed in the winter. I have SAD for sure. I can take vitamin D, and I do, but it isn't doing what natural sunlight does. If it did, my nails would be growing in the winter with the vitamin D, however, they don't. But once it's summer, they begin to grow just like all living things. I am now trying LDN (low dose naltrexone) for Sjogren's. Check it out. It brings down the high SED rate and inflammation, and some people have reported getting saliva back although it is not tauted for doing that. It's just much less side effects then let's say steroids or Plaquenil or heavier drugs. No side effects but vivid dreaming, and some other mild ones.