50f here. I was just diagnosed with Sjogrens this past week. I am here to understand it better. I have battled chronic dry eyes for several years to the point that my vision is impacted severely. I also keep chapstick and have a drink nearby at all times, and having this diagnosis makes me understand why these have just been normal for me for so many years. My teeth have almost all broken out of my mouth even though I've spent my life going to dentists trying to save every tooth possible. I have also had psoriasis/eczema my whole life and also have hypermobile joints (possibly EDS), so there's a whole bunch of issues I try to deal with including major depression and anxiety which I am now taking meds for and congestive heart failure recently diagnosed two months ago. Finally getting answers to my daily complaints is a weight off my mind knowing I'm not making this stuff up. Thank you for these videos :)
Gratitude for this programming as I frequently feel alone and lonely because others don't see nor can identity with the symptoms of Sjogrens . Thank you giving me an outlet and for allowing me to see another within my ethnic group.
Same here it's a very isolating disease and when I talk about with others people are so busy looking at my outside not understanding the pain I stay in.
People have told me “ it’s life over matter “ and it frustrates me when I’ve had this for more than 20 years and have so many complications now that a lot of them are so obvious and people dare to tell me that it’s all in my mind and to ignore it. How I wish it was as easy as just ignoring it.
I was diagnosed 15 years ago and I have had the symptoms of this disease all of my life. For so long it seemed like there was no info, Dr had no idea what's I was talking about. I remember one day my fatigue was so bad, all I did was put a shoe on and I calapsed in exhaustion. I'm so thankful to have all the information out there now!!
I'm 37, army veteran, nutritionist and bodybuilder and recently diagnosed 2 weeks after diagnosed with RA. This has been a difficult process. Now I'm determined to rise above it and attack it had on the best I can.
I was diagnosed with Sjogrens in 2018 a few months before I was diagnosed with stage four non Hodgkin lymphoma. The fatigue lately has been the worst. Like a weighted blanket Has been wrapped around me while somebody’s pushing down on my head. That is the only way I could describe it. Sometimes I don’t know if it’s the Sjogren’s or of the cancer is back. Although my last scan a few months ago was good. So I guess it’s Sjogrens. Glad I found this. Thank You
Recently diagnosed with small fiber neuropathy, and am still being tested for Sjogren's and/or anklyosing spondylitis. These explain the symptoms of the past 40 years of my life. I'm not happy about these diagnoses, but am relieved that the prior doctors were wrong; it's NOT "all in my head."
No matter how good all you say in this video is, it won’t help me with my economy... I’ve had to accept that I can’t sing anymore & barely talk unless I have Xylimelts melting in my mouth. I don’t have the money to fix my cavities so I cannot get a new mouth pease. My jaws are worn out & it’s hard to chew & swallow. There are no prescription medications for dry mouth (I can’t produce any measurable saliva. I only got 1000 $/month. 2500 &/year go to the Xylimelts. I’ll most likely lose all my teeth eventually. I can’t work because of my work injuries I got 1987. I also have Psoriasis (arthritis?) & asthma. My doctor doesn’t help me with any referrals. Sjogrens, Chronic pain & Psoriasis make me totally exhausted all the time.
I would suggest you have your old root canals removed , and you will be cured. I did and was cured . Look up relationship between root canals and physical illnesses . Or look for a Holistic Dentist for advice
50f here. I was just diagnosed with Sjogrens this past week. I am here to understand it better. I have battled chronic dry eyes for several years to the point that my vision is impacted severely. I also keep chapstick and have a drink nearby at all times, and having this diagnosis makes me understand why these have just been normal for me for so many years. My teeth have almost all broken out of my mouth even though I've spent my life going to dentists trying to save every tooth possible. I have also had psoriasis/eczema my whole life and also have hypermobile joints (possibly EDS), so there's a whole bunch of issues I try to deal with including major depression and anxiety which I am now taking meds for and congestive heart failure recently diagnosed two months ago. Finally getting answers to my daily complaints is a weight off my mind knowing I'm not making this stuff up. Thank you for these videos :)
Gratitude for this programming as I frequently feel alone and lonely because others don't see nor can identity with the symptoms of Sjogrens . Thank you giving me an outlet and for allowing me to see another within my ethnic group.
Same here it's a very isolating disease and when I talk about with others people are so busy looking at my outside not understanding the pain I stay in.
People have told me “ it’s life over matter “ and it frustrates me when I’ve had this for more than 20 years and have so many complications now that a lot of them are so obvious and people dare to tell me that it’s all in my mind and to ignore it. How I wish it was as easy as just ignoring it.
I was diagnosed 15 years ago and I have had the symptoms of this disease all of my life. For so long it seemed like there was no info, Dr had no idea what's I was talking about. I remember one day my fatigue was so bad, all I did was put a shoe on and I calapsed in exhaustion. I'm so thankful to have all the information out there now!!
I'm 37, army veteran, nutritionist and bodybuilder and recently diagnosed 2 weeks after diagnosed with RA. This has been a difficult process. Now I'm determined to rise above it and attack it had on the best I can.
I was diagnosed with Sjogrens in 2018 a few months before I was diagnosed with stage four non Hodgkin lymphoma. The fatigue lately has been the worst. Like a weighted blanket Has been wrapped around me while somebody’s pushing down on my head. That is the only way I could describe it. Sometimes I don’t know if it’s the Sjogren’s or of the cancer is back. Although my last scan a few months ago was good. So I guess it’s Sjogrens. Glad I found this. Thank You
Very similar feeling. You described it well
Recently diagnosed with small fiber neuropathy, and am still being tested for Sjogren's and/or anklyosing spondylitis. These explain the symptoms of the past 40 years of my life.
I'm not happy about these diagnoses, but am relieved that the prior doctors were wrong; it's NOT "all in my head."
I do find it difficult in the uk,the medical profession seem happy to brush it off as just dryness
Everything said in this video is so true.
Thank you. Keep up the good work.
Thank you for starting these episodes. I'm a Sjogren's patient and would like to be featured in an episode.
Thank you! ❤
No matter how good all you say in this video is, it won’t help me with my economy... I’ve had to accept that I can’t sing anymore & barely talk unless I have Xylimelts melting in my mouth. I don’t have the money to fix my cavities so I cannot get a new mouth pease. My jaws are worn out & it’s hard to chew & swallow. There are no prescription medications for dry mouth (I can’t produce any measurable saliva. I only got 1000 $/month. 2500 &/year go to the Xylimelts. I’ll most likely lose all my teeth eventually.
I can’t work because of my work injuries I got 1987. I also have Psoriasis (arthritis?) & asthma. My doctor doesn’t help me with any referrals. Sjogrens, Chronic pain & Psoriasis make me totally exhausted all the time.
I am right there with you, I simply cannot afford all the OTC products that we desperately need for our SS.
I would suggest you have your old root canals removed , and you will be cured. I did and was cured . Look up relationship between root canals and physical illnesses . Or look for a Holistic Dentist for advice
How can you have your root canals removed? What is put in place of them?
I've never had a root canal.
I've also not had a root canal, but I have this