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Thank you for posting this video i feel alot of the same way you do this is real yes i cant walk the store sometimes too

Did u die?

I was recently diagnosed with sjogrens and all i have is dry lips occasional fatigue and brain fog. It doesnt really effect my personal life but im assuming everyone is different.

Sweetie, you must somehow move more so you don’t lose more muscle mass. I know how hard it is because I have Sjogrens plus 4 other autoimmune diseases, including Lupus. You are so right - “it sucks”! I also had lung cancer and had a lung lobe removed years ago. On oxygen. Many other medical problems too. I’m 69. I push myself - in the house only. I am like you, just go to doctor appointments and “have to go places”, no energy for anything else. I am able to get into the pool and exercise but it’s hard. Exercise your legs and arms while lying down. Get some dumbbells for your arms and get those legs moving up and down and side to side. I’m so sorry for you and all people who deal with these terrible medical problems. God Bless to all.

❤❤❤❤❤thank you... U are where I am ... And I fell the same about using canes and wheelchair.. but u really helping me with just go use them and get out in the world 🌍🌍🌍 🎉🎉🎉🎉again

I have Sjogrens and I am feeling the same way today. Watching your video is like watching a friend that gets me! I've had the oh I'm so sorry from Doctors when I told them I had Sjogrens, because I thought yes! they know how it feels! wishful thinking., living it is knowing it right? My children are grown, but I was an absentee parent for years because I was so tired and the kids would be playing video games or on the computer when they weren't in school. Now they blame me for being a bad parent but at least I paid for their College education and they both have great IT jobs. Now they are estranged because they can't cope with my moodiness and lack of mobility. I'm sixty six now, fortunately my long suffering husband is still around and helping me. It's hard though not having friends or my children around. I have to consciously keep my mind occupied to ensure I don't get too depressed. I have had symptoms since I was Thirty. I used to have so much energy and years ago the Doctors really didn't acknowledge the illness. Recently my health has got worse. Great video, thank you from Wisconsin 😊

Hola, hello beautiful world God Almighty bless all.i have fibromyalgia and thyroid but for the last year , i was sooo sick i could not even talk i have not been diagnosed with this disease but i know my body very much Soo sorry for who ever is dealing with this horrible disase God bless all ❤️🌈❤️

I have Sjogrens also. Diagnosed since 2016 and unfortunately my lungs have been affected. Walking is difficult, very debilitating and sometimes with shortness of breath. My legs give out. After I do one chore, I have to sit for a while until I feel I can go on to the next thing - if I can! Sometimes I let the “other thing” go. What I do is limited and I have no choice but to accept it. I do force myself to keep going however and feel the more active I am (certainly not like before) I’m better off but when I need to rest the world can fall - I rest. Fortunately I have good friends who rally around me and slow down when I do. I thank God I’m alive, even with limitations. Positivity is the key for me - I take one day at a time and don’t dwell on the tomorrows.

I'm also a sufferer of chronic pain, specifically nerve. You should watch the documentary Under Our Skin. You probably have Lyme disease but tests always come back negative so you could have it but never know. you should watch the documentary it explains everything and also why the doctors treat people like us so badly. It's happening to all of us.

Thank you . I to want to part of my family fun time and life .

Oh my gosh girl 😮thank God you pulled through. I just started watching & subscribed to you. Thank you so much for what your doing. I too have sĵodrens too & been bedridden again 9 wks or more now. Prayers sweetie will continue following you. Your helping others- ME!

Last year I lost my balance and was taken to the ER and they admitted me for a mini stroke and they also stated I had some brain damage and this is before I was diagnosed with Sjogren’s and now I’m wondering if memory loss, loss of words & and losing my balance, had nothing to do with my neurological system, and had everything to do With Sjogrens

I have good days and I have bad days but I never know what I’m waking up to so it’s very hard for me to make plans with other people aside from my husband because I don’t want to be that friend who cancels all the time but my idea now of being able to go out with my husband is going to the grocery store or out to dinner because I could tell him at the last minute that I feel good or I don’t But it makes it very hard for people who do not have this disease to understand and I hate when they just think it is “just a dry mouth or dry eyes” it is so much more

I have lupus and RA doctor keeps wanting to check me for Your disease too I am in Walker and going into Wheelchair I feel exactly what your saying. People I feel look down on me for having these diseases it’s hard. I cannot stand long either always feel better sitting or laying down. Happy your talking about real situations and the pain. Being a mom with these diseases are hard.

Do you also have a mthfr gene mutation? Curious. I am also trying the mushrooms. It has been a couple weeks, not sure it is helping yet. Helps gut though. ;)

I know this video is a few years old but thank you for filming it. We're in January of 24 currently but in August of 23 my Rhumatologist diagnosed me with Primary Sjogren's Syndrome. With in the last five months alone my life has changed drastically. But the change really began over a year ago after having a unexpected stroke at the age of 34. I'm slowly adjusting and accepting my new life normalcy with a autoimmune disorder which hasn't been easy coming from someone who loved being out in the hot sun in the summer time going on two hour or more walks just for fun to explore. But now I can't walk 20 minutes outside without feeling super sick, or extremely exausted. I have to walk extremely slow just so that I don't use up all my energy. Walking long distance is now a privilege of the past that I can no longer do anymore without getting shortness of breath, and extreme pain and exaustion. When I know there is a chance I may have to walk a bit of a distance I take the walker my grandmother loaned me since she never used it anyway. I'm so thankful for it because when I used it I saw just how helpful it really was. I could actually pace myself and take my time without caring if I was walking too slow. It helped me stay balanced and conserve my energy. Lastly I recently bought my first mobility aid, a cane. I'm 36 with mobility aids but I'm thankful instead of embarrassed or ashamed. These are tools needed to help me get around more easier and I'm grateful for them. I don't care how others may perceive me because its none of their business and they not physically in my body. I know what I need and whats best for me.

Worst is when you HAVE to go somewhere and just push to get from A to B. On good days folks see normal. I accept I’ll say no when I can’t regardless of what they see.

Thank you so much for your video I’m go I have the same symptoms plus chest pain and shortness of breath. My family doesn’t understand I’m in bed most of the time and they think it’s in my head.l now panic if I have to go out I’m afraid I will fall down.life is so hard by the way I’m in my 80s I found out about it 5yrs ago so all these years I didn’t know I had it. I was in my 50s.now I’m not alone you help me so much. God Bless you❤

i wish i could take away your illness and get you better maybe find a doctor that can give you meds for sjogrens syndrome

hang in there i know it sucks to be ill and not have anything to do to fix it it really stinks especially when you cant get out of bed and take care of yourself. just remember. you have your family there to help i totally get it you arent doing well with it just do the best you can. i wish i was there to help. praying to you. hugs to you. maybe try another different kind of meds. maybe the meds your on arent working

Why do you need to stop walking. Is it burning pain, is it just exhaustion? Muscle fatigue ? I’am asking because I am the exact same way and I’m having a hard time because I look and act fairly normal until it comes to walking any distance and I just give out.

are you okay? Hopefully she didn’t die during Covid!

Totally understand you.,stuck with ss for 28 years now and I am 53 now.HATE MY LIFE and honestly the only wish I have not to wake up in the morning.i used to think that in these years of my life i would be able to just by resting I will have a few good days...gues what I am alone in pain just waiting for the end.

I was thinking about asking my doctor about Amantidine for fatigue and brain fog. I know some are candidates and some are not, so we will see.

Keeping you in my heart✝️

I am 69 years old and have Sjogrens, Lupus and Hashimotos. I have been bedridden for 15 months now with crushing fatigue. The autoimmune diseses have attacked my heart and I am now in Congestive Heart Failure.

That sounds just like Dysautonomia. Just like me. Sjogren’s is the second most common cause of it. ruclips.net/video/L5bcxm5Tbt8/видео.htmlsi=UFwBGmMcthkcYJtK

Hi.. when did your son Ethan start to speak? I just watched his speech delay video.. I too have a 2.5year old and he doesn’t speak much.. I put him in school and it’s been 2months but I don’t see any improvement in his speech .. he is a active and a happy baby just that he is having speech delay which worries me at times..

What test did they do to determine you have Sjogren's?

You are such an inspiration!! Thank you!

Why are you hosting? Ok can others bring things to your house. Dont host sweetie..

Oh the cane, its ok to me because it signals to others there is an issue. If you are crossing the parking lot the car knows to expect to give you a little extra time.

I am in tears. You are describing me.😢

Praise God

I am 74 and have Lupus. I also have Sjogrens. My neck and glands are always swollen and my neck hurts all the time. Does anyone else have this?

Great video. I know how you feel giving in to using the scooter. I was like that when I needed a walker. I didn’t want to give in to it, but I’m so glad I finally bought one. I always walked a lot before I became I’ll, but now it is very difficult for me. I found myself not going out at all, so I finally bought a walker. So glad I did. It enables me to walk a little way. Still can’t walk long distance, but I try to go out as often as possible and just walk short distances. My mobility is becoming worse also. So scary. I have Fibromyalgia and I am just being tested by a Neurologist for other conditions as my symptoms are changing and becoming worse. Good for you for taking advantage of any mobility aid you may need. Better to use them and stay involved in your families lives. Just do whatever you can. I know we beat ourselves up sometimes for not being able to participate in things, but we may, at some point just have to come to terms with just doing what we can and not worrying about what anyone else thinks. Big hugs to you. Stay strong❤️🇨🇦❤️🇨🇦😊

Im housebound, basically couchbound as im disabled from stroke, im 56 no kids, i have only one wish which is that very dark wish i wont mention, its just suffering 24/7

I know this video is over four yrs old, but I really needed to see this. I was diagnosed with Sjogrens about four years ago but the symptoms goes back almost twenty years only to be told by drs in my early twenties that my joints were hurting because I was getting a little older, that I was tired because I was a working mother, and basically the other symptoms were in my head. I really need to find a support group because it's hard when I'm having a flare but no one understands.

I have Primary Sjogrens starting in 2009. My doctor prescribed Tramadol 200 mg. 4 50mg pills a day. It is a Schedule IV drug. Stronger drugs are Schedule I . Percocet is Schedule II. The tolerance level for Tramadol does not build up like other opioids. The 200mg does is a medium strength dose. It is an Opioid Analgesic.That is the big difference if your Doctor doesn't want to prescribe it to you. Say Analgesic. Tramadol is one of the weaker opiates. The Overdose rate is only 6%. Tramadol is Different than just plain Opioids like Percocet or Hydrocodone. Tramadol works by interrupting nerves signal pain between the brain and the body. Hope this works for you.

I was hoping 5 years ago taking Orencia would have helped, I was sad to see this, I have similar pain as you do 🦋🦋🦋

Mine showed mildly scattered increased lymphocytes and plasma cells. Anyone know does that mean normal or does it point to Sjogrens?

I’m prescribed 60 mg of adderall a day and have no energy.

Wow I do alot of these things and never paid any attention to it

How the heck do you talk so fast when you are so fatigued. Wow, you are on high speed!

My teethe are rotting at the gum line because of dry mouth from autoimmune disease. No one told me this would happen from dry mouth. I now use mouth wash for dry mouth day and night, middle of the night if I wake up. Wish some medical professional had let me know so I could have started years earlier. Also I have scarring on my cornea from dry eyes.

Listening to you, it was like hearing the thoughts in my own head being spoken out loud. I've been suffering for years due to a back injury, several falls, and broken ankles. The fatigue is just the worst. Just can't seem to do anything but sit at the computer some days. I'm also mostly homebound. I was just recently, two months ago, diagnosed with Sjogren's. My doctor hasn't really discussed anything other than the dry mouth and dry eye symptoms. I've researched it some, and now I'm wondering if the way I've been feeling for years now has been Sjogren's all along.

Here is a theory you should consider... Maybe ALL "autoimmune diseases" are caused by having too many pathogens in the body so the cells and systems cannot do what they are meant to do. Pathogens might be parasites (such as can be injected by bug bites) or fungus/molds, or virus, bacteria, or metals from dental work or inhaling fumes, or toxic chemicals from cleaning fluids and many other sources. There are herbs that can kill parasites, (read Dr Rawls "Unlocking Lyme," and chelating foods that hook to metals and pull them out, as well as eating zero carbs that feed the pathogens. OR, there is a whole science in using micro-current frequency generators that vibrate pathogens to death and unlodge the metals and chemicals to slowly restore real health. Your doctor will not support this because their science does not support health but reduce symptoms. But, clearly, they have nothing to offer you or any other sufferers of auto-immune diseases. Check out frequency generators. I recently purchased a generator that I like called Spooky 2. You can take control of your health, your life, and help your loved ones. You CAN aim to become well. Many people have become totally well.

You deserve everything that happened to you

Just wondering if you did any type of repetitive exercise...like biking, Elliptical machine, or other ?

I am so happy to hear (and see) more people with Sjogren's with short hair etc. I was so sad to have to cut my hair, but it's also such a relief to not have to stress about it anymore.