My symptoms started at 14 but I wasn't diagnosed until 19. I started passing out and severe fatigue. I have very little support which makes it so much harder and the fatigue is the worst for me. I literally need to rest after just a doctor's appointment 😔
1. More stories on the pre-diagnosis journey. That would be the most helpful because it is during this part of the journey that makes a significant difference in gaining perspective about how to handle set back from symptoms and lack of support from the medical community and public at large. 2. Internal organ manifestations and Sjogren. Stories focusing on the human aspects of those going through this. It is scary but it is the unknown that makes it worse.That would be the most helpful because it is during this part of the journey that makes a significant difference in gaining perspective about how to handle set back from symptoms and lack of support from the medical community and public at large.
I just went through my worst flare in 27 years. I was diagnosed 15 years ago and have the full gamut Raynaud's, Fibromyalgia ,RA and Neuropathy. 60 years old male initially I had no idea what was going on I got diagnosed by accident.
Thank you so much. This video explains "us" the best so far. Because our cases can't be generalized & we are each unique. Diagnosing & treatment can be mentally draining & depressing causing a physical strain on the body.
Thanking God this is out here now and finally!! So sharing and hoping people understand what I had been saying for a few years about the overwhelming fatigue that I couldn't even explain or totally understand as well as some of the joint pain, which were all so easily ignored or explained away! Definitely sharing in hopes to spread awareness!
Thank you, I diagnosed two months ago 😢 , after two years sofer finally they diagnosed me , never heard before for this syndrome Thank you for this video 🙏
She right about telling someone how tired you are and the person coming back with how tired they are from running errands. Not trying to undermine their situation It's hard to get people to understand that's not why I'm tired. I'm tired because I'm living in a fatigued body daily and rarely does it let up.
It's horrible! Some days I'm in bed all day, I can tell the difference from cerebral palsy tired and lupus tired. My stepmother is always " you can do more than just lay around all day " people who don't have it don't get it.
I'm miserable and my family including my mother thinks it's all in my head. It's causing me depression. I just want to feel normal again. This is not easy to deal with and all the ups and downs. I have extreme dry eyes and mouth, I have metal taste in mouth, headaches and neck pain, fatigue, light sensitivity, nerve pain, now spot on my upper lobe of lung that I have to get a CT scan next week. when it flares I feel like I got hit by a truck. 😭
I’ve been dealing with the symptoms for 9 years and have seen multiple dr’s but they all just dismiss me. Most recently I’ve become anemic, adding on to the worsening extreme fatigue, dry mouth, itchy eyes, Hemicrania Continua, and increasing joint pains. But, I’m just exaggerating 🤪
This series of videos on Sjögren's Syndrome was very gratifying to help create! It has been wonderful and enlightening to work with Executive Producer Brad Lemack and Sjögren's Syndrome Foundation CEO Steven Taylor to create these videos to help patients and spread awareness of Sjögren's.
Glad to see more info about Sjogren's coming out....many of us suffer in silence because the general public has never heard about it...they usually think it's just dry eyes...
I’ve had dry eyes, dry mouth, constantly fatigue and depression, tingling or pain in my legs for years and was recently diagnosed with arthritis. I will try to find testing in my area to confirm Sjogren Syndrome so thanks so much for this video.
I would like to add that when you have Sjogern's dry mouth, the saliva is the begining of the digestion process and affects it. I wonder if less gastric acid is also produced in the stomach or is it more concentrated?.. I get horrible abdominal cramps and my system speeds up or slows down. It has affected my digestion. Sjogern's can cause vision loss because your eyes can become so dry and headaches... I notice too that I do not sweat like I use to. It can be 98 degrees and my body is trying to sweat, but my skin feels like I became a pin cushion... Basically, anything that is supposed to produce fluid could has issues.
I feel the same, all of it, and digestion is definitely affected. I also tested low in pancreatic acid by an alternative doctor but my conventional doctor has no idea what would cause that. It seems obvious that sjogrens could
Yes, it definitely affects our digestion. I was diagnosed with low stomach acid and gastroparesis. My naturopath suggested a digestive enzyme supplement with hcl pepsin called Solaray Hcl Pepsin 650mg. I can't live without it now!
A lot of doctors don’t even know about the “Early Sjogrens Panel” blood test. When anti-ro and anti-la come back negative, the doctor should do the ESP. It looks for salivary protein, carbonic anhydrase and another marker that has been found in Sjogrens patients and these markers manifest early on before ro and la.
I went undiagnosed for 10 years! I was diagnosed last week added to my RA and fibromyalgia. They haven't mentioned the hell on your pregnancies. I've had 3 miscarriages and 1 healthy son and a healthy daughter due in in 5 weeks.
Congratulations on your sweet baby! I'm just being diagnosed now at 69. First symptoms at age 37. Doctors have always said my symptoms were all in my head. SO frustrating.
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
Thanks for such a series. Keep on doing. Please make a video about how it can affect the internal organs specifically "Liver" and how to cope up with it as my Mother is suffering from it. Thank You very much once again.
I have no issue with my mouth being dry, it is my throat, and oh boy can it get DRY at times. The dry eyes oh they are really not nice, especially if you do not know what it is that is causing the DRY ITCHY feeling that you need to rub your eyes until they water - not a good thing for the eye mind. I have also been diagnosed with Fibromyalgia and Pernicious Anaemia ( this from birth and when I had my gall bladder removed). Thank you for all of this information.
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!!
The fatigue is inexplainable And the muscular skeletal pain Loss of dexterity and now mobility and the face plant falls leading to fractures Had I been diagnosed earlier I might still have teeth, eye sight and able to work I don’t want friends or to be social it takes to much energy During flare ups I am depressed and feel obnoxious, intolerant and generally not pleasant to be around I’d have No hypertension No liver pancreatic kidney and gut diseases My initial diagnosis was autoimmune hepatic disease (diagnosed during an event of acute liver failure) with multi organ dis function which incidental I always thought was bumkum Only recently have the respiratory problems started as I notice during flare ups air hunger and involuntary air grabs which are quite a weird sensation I do look well though and have been in denial that anything was wrong for a few years. But it’s at the point now where I just have to face facts even if I still don’t really want the meds Writing this is cathartic Thank you
I'm starting to think I may have this, my left eye gets so dry n blurry, especially if I use laptop or phone, I get bouts of soreness everywhere n extreme fatigue. Today I can't get off the sofa, I feel horrible. No dry mouth I don't think but I've had alot of phlegm in back of throat and post nasal drop past two weeks. I also get neuropathic itch on occasion, a really deep itch that flares up.
A disease will usually kill you, sjogrens most likely will not. I prefer not to think of it as a disease because if you are determined to overcome it in a dietary fashion you can. It takes determination to change your eating habits to very healthy and strict. I think a good portion of people would feel much better eating a healthier diet. I just found out this summer I have it and plan on putting myself on a strict diet.
@@criscross20 - Your reply is so true. Good nutrition is vitally important and can improve symptom management in significant ways. I am disappointed that they mention so many drugs and fail to mention the importance of adequate nutrition. I continued to work full time for 9 years after my diagnosis, and I don't think I would have been able to do that without the changes I made to my diet.
Besides having to have three major surgeries to remove organs that had been damaged, my eye dryness lead to ulcerated eyes, and they were extremely painful. I had to leave my high school English teaching career. You can’t talk, read essays, and the pain and brain fog left me unable to continue. I lost at least 3 teeth and can’t afford to replace them. Does anyone have any suggestions as to how to get teeth implants? It’s more than humiliating to have holes where my beautiful teeth used to be!
When it goes to the brain it can cause seizures but also confusion, depression...I was born with cp and didn't have seizures til age 19,lupus and SS symptoms at age 30 and DX at age 31.
Keep getting gaslit, meanwhile going further downhill. Just tried again and RA was concerned til the bloodwork didnt show, then he said get a family dr, get them to do a biopsy on my jaw that my lymph nodes have been swollen in my jaw for 3 years. Couldnt he have done that? I just saw that 30% of people with it, it doesnt show up in the bloodwork.
Thank you for created a series on Sjogrens! Thank you for validating our struggles. I sobbed as I watched,not from sadness just gratitude.
My symptoms started at 14 but I wasn't diagnosed until 19. I started passing out and severe fatigue. I have very little support which makes it so much harder and the fatigue is the worst for me. I literally need to rest after just a doctor's appointment 😔
Thank you for this series!!! Sometimes I feel so misunderstood!!!
Anastasia Beaverhausen Amen sis!
Me too!!!!
Heartfelt
No Tear's To Cry 😑
1. More stories on the pre-diagnosis journey. That would be the most helpful because it is during this part of the journey that makes a significant difference in gaining perspective about how to handle set back from symptoms and lack of support from the medical community and public at large.
2. Internal organ manifestations and Sjogren. Stories focusing on the human aspects of those going through this. It is scary but it is the unknown that makes it worse.That would be the most helpful because it is during this part of the journey that makes a significant difference in gaining perspective about how to handle set back from symptoms and lack of support from the medical community and public at large.
I just went through my worst flare in 27 years. I was diagnosed 15 years ago and have the full gamut Raynaud's, Fibromyalgia ,RA and Neuropathy. 60 years old male initially I had no idea what was going on I got diagnosed by accident.
Thank you so much. This video explains "us" the best so far. Because our cases can't be generalized & we are each unique. Diagnosing & treatment can be mentally draining & depressing causing a physical strain on the body.
Thanking God this is out here now and finally!! So sharing and hoping people understand what I had been saying for a few years about the overwhelming fatigue that I couldn't even explain or totally understand as well as some of the joint pain, which were all so easily ignored or explained away! Definitely sharing in hopes to spread awareness!
Me too
Drs need to think out of the box.
Thank you, I diagnosed two months ago 😢 , after two years sofer finally they diagnosed me , never heard before for this syndrome Thank you for this video 🙏
This video is great. It tells about SS affecting internal organs and is so much more than just dry eyes & mouth.
She right about telling someone how tired you are and the person coming back with how tired they are from running errands. Not trying to undermine their situation It's hard to get people to understand that's not why I'm tired. I'm tired because I'm living in a fatigued body daily and rarely does it let up.
Yes that is one of my biggest pet peeves! I want to say: No, you are NOT tired, you have no idea, I am the definition of tired!
It's horrible! Some days I'm in bed all day, I can tell the difference from cerebral palsy tired and lupus tired. My stepmother is always " you can do more than just lay around all day " people who don't have it don't get it.
I'm miserable and my family including my mother thinks it's all in my head. It's causing me depression. I just want to feel normal again. This is not easy to deal with and all the ups and downs. I have extreme dry eyes and mouth, I have metal taste in mouth, headaches and neck pain, fatigue, light sensitivity, nerve pain, now spot on my upper lobe of lung that I have to get a CT scan next week. when it flares I feel like I got hit by a truck. 😭
I’ve been dealing with the symptoms for 9 years and have seen multiple dr’s but they all just dismiss me. Most recently I’ve become anemic, adding on to the worsening extreme fatigue, dry mouth, itchy eyes, Hemicrania Continua, and increasing joint pains. But, I’m just exaggerating 🤪
This series of videos on Sjögren's Syndrome was very gratifying to help create! It has been wonderful and enlightening to work with Executive Producer Brad Lemack and Sjögren's Syndrome Foundation CEO Steven Taylor to create these videos to help patients and spread awareness of Sjögren's.
Glad to see more info about Sjogren's coming out....many of us suffer in silence because the general public has never heard about it...they usually think it's just dry eyes...
I’ve had dry eyes, dry mouth, constantly fatigue and depression, tingling or pain in my legs for years and was recently diagnosed with arthritis. I will try to find testing in my area to confirm Sjogren Syndrome so thanks so much for this video.
I would like to add that when you have Sjogern's dry mouth, the saliva is the begining of the digestion process and affects it. I wonder if less gastric acid is also produced in the stomach or is it more concentrated?.. I get horrible abdominal cramps and my system speeds up or slows down. It has affected my digestion. Sjogern's can cause vision loss because your eyes can become so dry and headaches... I notice too that I do not sweat like I use to. It can be 98 degrees and my body is trying to sweat, but my skin feels like I became a pin cushion... Basically, anything that is supposed to produce fluid could has issues.
I feel the same, all of it, and digestion is definitely affected. I also tested low in pancreatic acid by an alternative doctor but my conventional doctor has no idea what would cause that. It seems obvious that sjogrens could
Yes, it definitely affects our digestion. I was diagnosed with low stomach acid and gastroparesis. My naturopath suggested a digestive enzyme supplement with hcl pepsin called Solaray Hcl Pepsin 650mg. I can't live without it now!
A lot of doctors don’t even know about the “Early Sjogrens Panel” blood test. When anti-ro and anti-la come back negative, the doctor should do the ESP. It looks for salivary protein, carbonic anhydrase and another marker that has been found in Sjogrens patients and these markers manifest early on before ro and la.
Thank you, mama byrd
I went undiagnosed for 10 years! I was diagnosed last week added to my RA and fibromyalgia. They haven't mentioned the hell on your pregnancies. I've had 3 miscarriages and 1 healthy son and a healthy daughter due in in 5 weeks.
Update my baby was born at 35 weeks and is healthy!
I got embarrassed around my friends having sjorens but I came across an herbal doctor on CZcams dr udoka who cured me totally with no side effects.
Congratulations on your sweet baby!
I'm just being diagnosed now at 69. First symptoms at age 37. Doctors have always said my symptoms were all in my head. SO frustrating.
@Rollwithit699 Thank you she is 2 in July and a funny, unafraid little nugget that full-on tackles her 5 year old brother!
After having this disease/RA ...ALSO SJogren's...was excited to hear this series. THANK YOU SO MUCH.
Super excited about the series! Thanks for spreading awareness.
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
Thanks for such a series. Keep on doing. Please make a video about how it can affect the internal organs specifically "Liver" and how to cope up with it as my Mother is suffering from it. Thank You very much once again.
Can I plz contact you are u from india
@@gseducation8557 May I know why?
One of my relatives is also suffering .if there could be something
Shared on my tweeter account!
Fatigue is debilitating and headache every single day!
I get headaches every day too
I was just diagnosed I am very fatigued.
Great discription of SS . Thanks
I have no issue with my mouth being dry, it is my throat, and oh boy can it get DRY at times.
The dry eyes oh they are really not nice, especially if you do not know what it is that is causing the DRY ITCHY feeling that you need to rub your eyes until they water - not a good thing for the eye mind.
I have also been diagnosed with Fibromyalgia and Pernicious Anaemia ( this from birth and when I had my gall bladder removed).
Thank you for all of this information.
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!!
The fatigue is inexplainable
And the muscular skeletal pain
Loss of dexterity and now mobility and the face plant falls leading to fractures
Had I been diagnosed earlier I might still have teeth, eye sight and able to work
I don’t want friends or to be social it takes to much energy
During flare ups I am depressed and feel obnoxious, intolerant and generally not pleasant to be around
I’d have No hypertension
No liver pancreatic kidney and gut diseases
My initial diagnosis was autoimmune hepatic disease (diagnosed during an event of acute liver failure) with multi organ dis function which incidental I always thought was bumkum
Only recently have the respiratory problems started as I notice during flare ups air hunger and involuntary air grabs which are quite a weird sensation
I do look well though and have been in denial that anything was wrong for a few years.
But it’s at the point now where I just have to face facts even if I still don’t really want the meds
Writing this is cathartic
Thank you
I'm just not getting testing done after 10 years!
I'm starting to think I may have this, my left eye gets so dry n blurry, especially if I use laptop or phone, I get bouts of soreness everywhere n extreme fatigue. Today I can't get off the sofa, I feel horrible. No dry mouth I don't think but I've had alot of phlegm in back of throat and post nasal drop past two weeks. I also get neuropathic itch on occasion, a really deep itch that flares up.
It is really a result of root canals and their dangers - see a holistic dentist I did
Sizi anlayabilmem içinde Türkçe alt yazı lütfen ,teşekkürler.
17 years.
Why is Sjogren's called a syndrome instead of a disease, since it's an auto-immune disease?
A disease will usually kill you, sjogrens most likely will not. I prefer not to think of it as a disease because if you are determined to overcome it in a dietary fashion you can. It takes determination to change your eating habits to very healthy and strict. I think a good portion of people would feel much better eating a healthier diet. I just found out this summer I have it and plan on putting myself on a strict diet.
@@criscross20 - Your reply is so true. Good nutrition is vitally important and can improve symptom management in significant ways. I am disappointed that they mention so many drugs and fail to mention the importance of adequate nutrition. I continued to work full time for 9 years after my diagnosis, and I don't think I would have been able to do that without the changes I made to my diet.
Besides having to have three major surgeries to remove organs that had been damaged, my eye dryness lead to ulcerated eyes, and they were extremely painful. I had to leave my high school English teaching career. You can’t talk, read essays, and the pain and brain fog left me unable to continue. I lost at least 3 teeth and can’t afford to replace them.
Does anyone have any suggestions as to how to get teeth implants? It’s more than humiliating to have holes where my beautiful teeth used to be!
Aspen will work with you on a payment plan. If you have Care Credit they will take that too. I recently lost all of my teeth and had to get dentures.
So. Thing I just thought of- I wonder if cannabis oil would help for the joint inflammation.
What about seizures?
When it goes to the brain it can cause seizures but also confusion, depression...I was born with cp and didn't have seizures til age 19,lupus and SS symptoms at age 30 and DX at age 31.
I would like a discussion on colon issues
Just lost father in law from colon cancer. 😢😢
What triggers this ! My daughter was just diagnosed
Keep getting gaslit, meanwhile going further downhill. Just tried again and RA was concerned til the bloodwork didnt show, then he said get a family dr, get them to do a biopsy on my jaw that my lymph nodes have been swollen in my jaw for 3 years. Couldnt he have done that? I just saw that 30% of people with it, it doesnt show up in the bloodwork.
I hate this gotdamn disease. I can't do anything. i have no life. I stay in bed all day. I never fulfill dreams, goals. death would be better.
So sorry. I nap everyday. Can only do a few chores each day and I'm beat.
No. Get a dog then you have to walk. Hope you can
I'm the same so tired. But my wee doggy makes me go out. Then you will feel better for it.