I totally can relate to it, poor sleep , insomnia. Brain fog. Depression from poor sleeping….

@livingwithsjogrensdisease1550

Жыл бұрын

Thank you for sharing, hope you feel better more days than not. 😊💜💙🩵

@livingwithsjogrensdisease1550

11 ай бұрын

PS- I'm praying for you to feel better, 🙏.

@PrettyEyesz

10 ай бұрын

Yes me too...

I had a stroke a year ago and lost memory and cognitive function from it. Often times when Im talking to someone I will loose my train of thought, and I always thought I so Forgetful now because of my past stroke but two months ago I was finally diagnosed with Sjögren’s over a year of not knowing whether I had Sjögren’s or Lupus. But I'm trying all that I can to learn about this disease, but my family doesn't really seem to care or understand and are very impatient so when I don’t comprehend something as quickly as they think I should they get irritated at me. But I can't help how my brain is processing information. I didn’t use to be like this. A year ago I was working, could go on a two hour walk in the hot sun with no problem. I rarely felt sick unless I was on my period. Now most days I can't get out of bed, my body aches all over, and I feel sick to my stomach almost everyday and very physically weak. Yet my family expects for me to do most of the things I've always done. But physically I'm too exhausted. And my eyes feel like I have sand in them everyday. This is annoying and has changed my life so much, I hate it. 😤

@livingwithsjogrensdisease1550

10 ай бұрын

I understand. Sjogren's affects every part of the body. You are suffering pain, extreme fatigue, brain fog, maybe chronic poor sleep, daily GI distress, grief for the vibrant life you had, perhaps some loneliness due to not being able to keep up with others socially. There used to be time when i felt like a total looser because i couldn't keep up, think straight etc. Ive learned to be my own biggest supporter with self compassion, confronting those lies with truth & positive self talk. There are times I do feel better & can do things like taking my dog to nearby lake to play, swim, relax in the shade, or clean & organise my living space. But even then & ever more my old life is gone. I morned it 4 - 5 years once I had to stop working. Sometimes the vibrant side comes back to visit but temporary so I soak it up for all it is when it comes & then lower my expectations, cellebrating every time I choose to get out of bed. Yay. You are a warrier, and beautiful person. Big hugs & prayers for you. ❤️‍🩹

@PrettyEyesz

10 ай бұрын

@livingwithsjogrensdisease1550 Awe thank you, you're comment brought tears to my eyes. Sometimes I do say positive affirmations which help with my confidence. Thank you for publicly sharing you're experience with Sjögren’s Syndrome and for also being so kind and sweet. It makes me feel less alone. Peace and blessings to you and you're family. 🩵💜

@suzanneladue5828

9 ай бұрын

🫂🙏

I get the vibrations also. They can happen anywhere in my body. Not every day, just out of the blue. Thanks for your videos. Enjoying them. ❤️🇨🇦❤️🇨🇦

@livingwithsjogrensdisease1550

9 ай бұрын

Thank you for sharing. Those vibrations are so wierd, and so random, like you said, "Out of the blue". Hope you're feeling good today & is a lovely day. 💜💙🩵

Thank you wonderful lady very interesting ❤

@livingwithsjogrensdisease1550

9 ай бұрын

🫠 have a very blessed day. 💜💙🩵

My husband gets so mad but I can't help it I know he wants me the way I was but slowly over the years it's gotten worse.when you tell people you have sjogrens it's away the same What I've never heard of it before even the dentist.

@livingwithsjogrensdisease1550

11 ай бұрын

Ya, it's so hard with family, their grief & frustration comes out as anger. My hubby no longer feels angry but I think they get lonely for the constant predictable companion they had. It's not our fault, but still feels a burden. Our support for each other helps so much! 😊💜💙🩵

Thanks for sharing. I have every single symptom you've presented (brain fog and insomnia are hitting big time). And I'm a guy, so not a typical Sjogren patient. I use scleral lenses. Have you tried moist chamber goggles?

@livingwithsjogrensdisease1550

9 күн бұрын

Hi. I've heard a little of scleral lenses but not moist chamber goggles till now. I want to try them. Great idea!!! I'll read on it today, try to get some. 👍 I sure hope your insomnia improves soon. 💜💙🩵🩷

@guitargeek6182

8 күн бұрын

@@livingwithsjogrensdisease1550 I have mixed feelings about my scleral lenses: at the end of the day, it's either my eyes are killing me because I'm not wearing my lenses, or because of them. That's why I'm wondering whether moist chambers would be better. But I'm not too excited about spending 200 bucks + shipping (I live in France) just on a plastic frame with a silicone seal, for something that might not work in the end (and make you look like a disabled person). I already spent 400 bucks for each scleral, and they're not even corrective lenses, just a shield for my eyes. If I may, another important topic would be scales: scales for assessing fatigue, and scales for pain. There are different scales in the literature, but doctors don't always use them. It would be good to be able to assess fatigue and pain throughout the day, with a simple and workable scale. All the best.

@livingwithsjogrensdisease1550

7 күн бұрын

I agree that a consistent use of scale is very bennificial. In the US patients report pain levels by a number 1-10, 10 being the worst & or faces scale. I'd like to see level of suffering add to the scales. This could provide more information to accurately assess need for treatment. Scales don't take into account how people with same symptoms differ in how the mind & body handles it. If two people with same pain severity or fatigue level measure themselves differently such as one says 5/10 pain while the other says 8/10 one could potentially recieve less than adequate treatment for condition no less severe. Still, as an RN I believe the pain scale is an important tool that should always be used in assessment. And the patient should always be believed. 💜💙🩵🩷

Omg I can relate to the vibrations because I always think my phones on vibrate in my pocket or nearby but it’s upstairs

@livingwithsjogrensdisease1550

2 ай бұрын

It's weird isn't it. Freaks me out every time. Hope your day is awesome! 💜💙🩵🩷

I’m sorry you have sjogrens 😢I have many sjogren symptoms but the test are negative..it’s very frustrating when there is no help 😢 I need something for the anxiety…I’m taking Gabapentin ….but it’s not working as well. 😊

@livingwithsjogrensdisease1550

11 ай бұрын

I began lamotrigine late Spring this year & buspirone 5mg in mornings, has been very helpful for me. I'm also on duloxetine 30mg but I'm working to wean off of duloxetine due to side effects, it's actually made my anxiety worse. So far my diet change & the lamotrigine has helped me most, still have symptoms but my energy is 50% improved more days than not. Hope you start feeling better quickly, and are able to find symptom solutions.❤️💜💙🩵

@roseyc.5846

9 ай бұрын

Gabapentin didn't work for me AT ALL.

@livingwithsjogrensdisease1550

9 ай бұрын

Not me either.

@pamcarter3214

3 ай бұрын

I take duloxetine

@livingwithsjogrensdisease1550

3 ай бұрын

Thank you for sharing. It works great for a lot of people. I'm staying on 20mg/day. Higher than that though gives me nightmares, really freaky ones. It's a great med for a lot of people. I hope it's working well for you. 💜💙🩵🩷

Play KJV Bible Healing Scriptures nightly and Thank God for my mind , my health, and my abilities . Be thankful, be positive, use as many natural remedies as possible. Sidenote....i told my dr i had Sjorens....she finally tested me and yep i have it.

@livingwithsjogrensdisease1550

9 ай бұрын

Great job on self advocating & not giving up the battle of getting to a diagnosis. I love your courage ❤️. I'll look up the KJV healing scriptures & listen while relaxing my mind & brain for sleep. Purposeful input will help with intrusive thoughts. Thank you for sharing the idea! Praying good sleep for all of us. 💜💙🩵

Lupus Sjorens Fibromyalgia and MSD alao brain fog from Lupus and Sjorens imagine that i take alot of time

@livingwithsjogrensdisease1550

9 ай бұрын

💜💙🩵❤️

😢 P r o m o S M

I have severe urinary burning

@jamiesarata7786

4 ай бұрын

If anyone suffers from severe urinary burning, please comment on how you were treated and what kind of physician you were treated by. I’ve seen multiple urologists, gynecologist, uro gynecologists, primary physicians, rheumatologists, pelvic floor therapist, Acupuncturist, I’ve had cystoscopies, CT scans, MRIs, ultrasounds, multiple 24 hour, urine test, numerous urine cultures that come back negative for bacteria or infection with no relief. Doctors do not know how to treat this disease and I’m desperate for relief because I cannot take this pain anymore. I had symptoms of urinary burning for over three years and extreme muscle and joint pain for about four months. I finally had to lip biopsy, which came back positive For Sjogrens. I am now treated with cell cept and prednisone. I am on a waitlist to see an immunologist in July. Something more needs to be done for people like us. It’s unacceptable for us to have to be in this much pain with no relief for so long. I feel very sorry for people that have this disease and go untreated for a ridiculous amount of time.

@livingwithsjogrensdisease1550

4 ай бұрын

I'm sorry you are having to deal with that. It's literally debilitating, painful, hard to concentrate, get stuff done. ❤️ so many causes. Some things I've found most helpful through the years are: hydrating b4 intimacy & pee right after, waring cotton undies, gave up foods & beverages that seemed to make it worse, best thing, I started a consentrated cranberry suppliment daily. I be praying for a solution & healing. Sorry this was long.

It’s not fun, is it!? 🤦🏻‍♀️🤗

@livingwithsjogrensdisease1550

Жыл бұрын

It's not. But I'm used to it & ways of coping, always learning more. I esp like all the things you share on your channel. It helps so much. I'm going to contact Jason, I think that's his name. I'll get his info from your channel videos of interview with naturopath. I really need the dietary help too. 😊

@mysjogrensjourney

Жыл бұрын

@@livingwithsjogrensdisease1550 Hi Vickie, I replied to you here yesterday, but can’t see it! Did you read it yesterday? Do let me know. Otherwise I’ll rewrite what I wrote! 😀

@livingwithsjogrensdisease1550

Жыл бұрын

I did see your comment, "It's not fun is it", and did respond I believe. I do see 2 responses but for some reason it can't view them. I'll keep trying.

@livingwithsjogrensdisease1550

Жыл бұрын

Oh, I found my response. I tried again to click on your original comment & that's where your's & mine shows. This KZread thing is so hard for me to figure out. 🙃🤪

@mysjogrensjourney

Жыл бұрын

@@livingwithsjogrensdisease1550 it’s weird I can’t see my response to yours! Just incase it got accidentally erased or something, I was pretty much saying that I really like your channel too and I feel we have a mutual appreciation going! 😂🥰🥰. I then said that I can send you Jeremy’s email via Instagram messenger, if you like and that I’m so pleased you’re going with him. And how I had my first protocol from him a few days ago. I’ve already started the nutrition side, but will be buying the supplements end of the month due to finances, and paying for some tests, the month after that. But it’s all very exciting. I love how individualised he makes the plan. You’ll see what I mean.