I had a pre-existing neurological disorder before I got diagnosed with Sjogrens. I’ve dealt with pain and fatigue for years already but this fatigue is like nothing I’ve ever experienced. I hate watching television and I’m not very good at doing nothing. I do my best to take 2 - 20 minute stationary bike rides early every morning. Then I just try my best to get moving and try to as much done as I can. When I’m completely exhausted, I give in and I close my eyes for 45 minutes to an hour. Then I force myself to get moving again. Some days are better than others but I accept what life throws at me. I’d love to sit down and cry but I already know that doesn’t work. For me, attitude is everything.

Please put up on your FB site more about immunosuppressants. This has been suggested to me with extended symptoms. No one truely understands what we go through when it attacks the body.

I can’t stand the pain anymore

Great information, if everything goes well this should do the job. But listen, there's one factor that's usually overlooked that can considerably speed up the process, unfortunately I do not have it at hand, but it can be go’ogled Dobbie Nerkstrol's Infertility Cure, I think.

The medical and pharmaceutical community is poisoning the minds of people! " The body is mistakenly attacking it own protective system....", " the little white blood cells enter into these flued...". Lies! Lies! In an arson the firefighters risk their lives to save lives and properties but unfortunately couldn't, who should be blamed, the firefighters or the arsonist? The immune system is like the firefighters then why blaming the immune system for the uncontrollably information of the body that they didn't cause but only tried to stop ? All diseases are manually inflicted from believing and living a lie. All diseases can be healed if we stop believing lies about the immune system and take responsibility for the intoxication of our bodies. Who is the real arsonist?

Does sjogrens create leg instability?

Planet Ayurveda’s treatment is amazing for Sjogren’s Syndrome. I feel like I have my life back.

I was recently diagnosed with Sjogren’s and appreciate videos like this. Serious athlete my whole life until recently felt horrible fatigue and my legs felt like numb bricks that couldn’t move anymore. I too got the eye swab test as the first indication I had this. Please be your own best advocate with your team of doctors!!!!

Hello I was diagnosed with this Syndrome on my 60’s after one of many flu like symptoms this particular day Xmas time I had just returned from a trip I was sick and went to work that night my supervisor sow that I was not right she told me to get to the ER asap in theER the Dr in charge did say is a bad flu but he just couldn’t understand the lost of fluids in my body it was too much he did a lot of test specially taking blood for different things he new that I was out of the country and decided to go far with more blood test until many hours later and a #6 IV fluid to keep my body hydrated and me alert he found the problem I thank GOD for everyone who try their best to help and feel that all was good and help so many others, of course before this like I said I suffered of so many colds and coughing spells chocking easily allergies and going to so many Drs its been a long journey for me now I know what I have and I am taking care of me I am 70 years old married two beautiful kids and my sweetest granddaughter GOD thank you there are great human beings out there and I prayed for all THANK YOU for making a difference, yes I have RA Rheumatoid Arthritis my lungs are compromised my kidneys and bladder and I am happy to be alive

When I say I'm "fatigued," I mean I feel like someone dropped a safe on my head. I am spent, wiped out, flattened. It's a whole different thing than "not getting enough sleep."😒

Is swelling and pain in feet connected to sjogrens ! My blood test are negative for everything else… just thinking… my GP doesn’t know what us causing it!!

Unrelenting discomfort, fatigue and pain. I might have a good day here n there, but mostly it's pretty bad! Even if I'm doing all the right things I can feel terrible.

Exercise ?? Sounds great BUT then the joint, bone and muscle paint kick in! 😑

How to become part of the foundation ?

Wish I'd known this in April

I feel as though this would have been more beneficial in April? Maybe?

I was diagnosed with Sjogren's Syndrome by my rheumatologist at age 35 in August of 2023. But its no telling how long I've had the disease and was unaware. I currently take daily eyedrops for my dry eyes, and Hydroxychloroquine for overall symptoms and recently I was diagnosed with Inflammatory arthritis in relation to my Sjogren's and I take a steriod methyalprednisone for my arthritis pain. Its been a crazy year dealing with this new illness and having issues like immediate memory loss often, chronic fatigue that never goes away no matter how much rest and sleep I get, the dry eyes can be very irritating and sometimes painful when they become dry, red and irritated. And lastly I don’t well in heat, I passed out multiple times last summer in weather that wasn't that hot at all. This disease has also affected my mobility. I went and purchased a cane, then a rollator walker, because when my knees are hurting because of my Inflammatory arthritis, or I am extremely weak from the fatigue I have to use my mobility aid to help me walk. Never thought I would ever be using a walker in my mid thirties but yet here I am. And worst of all I can no longer work because I'm too sick. I hope in the future to get disability income, but this last year I waited almost two years, had a hearing with a judge and still was flat out denied. I really don't know what to do for income at this point. I just hope I don't end up homeless because of this illness. Its not like the US government gives a care about the disabled anyway. But yeah its been a rough year for me dealing with this disease. Sorry my comment was so long, blunt and unhappy...

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Abusive work place is deadly for autoimmune fatique.

Sizi anlayabilmem içinde Türkçe alt yazı lütfen ,teşekkürler.

I was diagnosed with Sjogrens and Chronic inflammatory demylenating poly neuropathy in 2022. Lost full contol of my bodys funtions for 20 weeks and had to relearn everything

Fatigue is not visuele so People and even doctors do not understand it well also because of the dryness mouth, lips ,throat skin. I have sleepingdisorders from these but also from pain. Dvn and so on also my eyes with Macula

I am living in the Netherlands having Sjogren's disease a very long time. I also have Pots symptomps and dysautonomia but what can you do to it? Our Sjogren's foundation are not so informeren as well as in the USA. Thanx a lot of this informations

It’s. Terrible disease so painful and there’s nothing they can do or don’t want to do you must help yourself because these doctors don’t know what to do

30 yo with sjogrens here. How donyou deal with the pain!

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Word salad for " we have no idea, but we need your money to offer no help."

I have no good days. Oh, I had two good days last year.

Try 32 years 😢. Took over 10 years to diagnose. When women reach the level of Sjgrorens, I live with, you 💯will think of death being a relief. My opinion only. Good night, folks. 😢 P.S. SEE the edit? Blindness will be a relief 😌

Yes, these vaccine can hurt you. So many people have been harmed by them, people I know.

Drs need to think out of the box.

That guy obviously had no idea what real severe fatigue is 🙄 it's not oh I'm tired fatigue, it's a you wake up with zero energy, do not get energy from caffeine, do jot get any energy or fuel from eating food. It's complete severe exhaustion with no energy from any source. It's like putting gas in a car, a new battery and new parts and the car still won't run at all. No one knows why. Exercise 🤣😂🤣😂 wow he's clueless!! It doesn't work. He needs to experience Sjogren's himself.

It’s unreal to have the fatigue, neuropathy pain , that’s also extremely painful in my fingers , l often ask God how can a human being feel so bad and still be living, he says l am carrying you through this time and l will never forsake you Thank You Jesus 🙏🙏🙏l am not alone , l can do a little today , and l hope that tomorrow l can get my doctor to help me, with all this pain not everyone are dope addicts l am 76 years old how many days do l have on this earth ? Doctors need to understand their patients more , Dear Jesus Christ please help Doctors to help the people that are elderly especially, who are not looking to get high , but just wanting some relief from their chronic pain ( more education on Sjögrens and other devastating autoimmune disorders, information on autonomic disorders “ peripheral neuropathy they need to realize that most illnesses derived from the Central Nervous System 🙏🇺🇸🙏

Exercise????

For 14 years before my diagnosis of Sjögren’s, I thought I was just weak, that I couldn’t handle everyday pain or common illnesses. So I felt validated. But it also helped me paradoxically to see that oh thank goodness this isn’t how everybody feels.

I took plaquinal (sp?) for 11 mos for sub-acute Lupus. Last month of treatment I got mildly nauseated. Luckily sub-acute Lupus went away.

Fatigue conjures up a message of tierdness, with myself . Thats not a correct description, its total exhaustion to point where it like your body has just had its enery switch flicked off.

I don’t qualify because my husband make just over to much even though I worked my whole life. If my husband passes the I would be better to get his normal SSA

Exhaustion x 3. Add RA and Hashimotos 😢

I am a gardener. I have a seven bed garden, I grow vegetables I can them I cook, I do a lot. I also have a really disabled spine. I push myself. The only meds are three opiates a day. If I didn't have that, I would not be able to do the things I do. Right now I'm going through a flare and I have been diagnosed with Sjogren's for about 20 years now. I'm 64.

Thank you so much, Venus, for your uplifting words. I too suffer from a debilitating autoimmune disease (myalgic encephalomyelitis) that keeps me bed bound for most of the time. I used to play tennis, but can't anymore. I have always loved watching you and your sister on the court. You are both such major inspirations - but particularly you in terms of how you manage your disease. Many greetings from Copenhagen, Denmark ❤🙏❤

Do u think pneumonia shot is benifical to a 71 year old who has sjrogrens and take hydroxychloroquine-

Laying on back in bed ,sorry my phone tupes what it feeld like sometimes

I was lauing in bed on back watching t.v. eaiting to drift off to sleep and the whole room started spinning it lasted about 2 minutes

Has anyone experienced dizzy spells from Sjrogrens.

Thank you for all that you do in bridging the gap in getting very useful and relatable information for those of us with Sjogren's. What a wonderful resource!

So, basically, everything except veggies 😢 It is hard to find a diet that works. I also hace Celiac Disease so I find it hard to find accesible food if it is not cooked at home

Exercise you people are crazy

Swimming slowly helps me a lot, partly due to the actual exercise but also having conversations with others.

Dr Thomas . Love his book❤