1. < Autoimmune Diseases

Sjogren’s Syndrome – Introduce yourself and meet others

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I'm in pain most days and would like to have discussions.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

robertjgoldenjr | @robertjgoldenjr | Jul 22, 2022
In reply to @jip499 "I was diagnosed about 35 years ago through a lip biopsy at Scripps in La Jolla...." + (show)
@jip499

I was diagnosed about 35 years ago through a lip biopsy at Scripps in La Jolla. Tight now, I had a negative test for ANA and SS-A. But I have a lot of eye and mouth problems.

My new rheumatologist thinks my Sjögren’s is inactive because of negative SS-A and ANA. That is false for I have very active disease in eyes and mouth and other.

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What type of issues are you having with your eyes and mouth?

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1 reply
adlttl123 | @adlttl123 | Jul 22, 2022
In reply to @ninette "It's a long story. In short: in the last 7 years I had Cauda Equina Syndrome..." + (show)
@ninette

It's a long story. In short: in the last 7 years I had Cauda Equina Syndrome (2015), a fractured hip (2016), a spinal stroke (2018; for a while I was paralysed from the chest down)), 2 fractured vertebrae and a huge infection at L2 due to part of the facet joint crumbling (probably happened during the fall that also caused my fractured hip, but only discovered late last year). And in the last few years, also dry eyes, nose, mouth, throat...well, basically everything. Process for the Sjogrens diagnosis is still ongoing due to covid (everything takes longer now)- the only thing I still need is the salivary gland biopsy (the CT of the gland showed a disturbed pattern). Sicca has been diagnosed by ENT doctor. This foul small in my nose and taste in mouth started after my own covid infection (March 2020)- could be related, or maybe not. Had tests for covid and diabetes (negative). Nothing wrong with my sinuses either and I have the feeling it's coming from my stomach acid reflux probably due to gastroparesis (apparently some people with Sjogrens get that). Also, because I don't have much saliva, the stomach acid makes a comeback (haha) undiluted, so that might very well be the reason. Starting to change my diet (less coffee and fizzy drinks, less fatty or spicy foods, eat smaller portions more often) and take antacids (Rennie). How do I cope? Some days better than others. Having work that I do with passion helps a lot to distract me from the nerve pain I have since the neurological stuff happened (but not from the foul smell, regretfully) and I have a lovely husband who helps me as much as he can. The thing I regret most is that I can't walk on my own again since I lost my balance due to the stroke. But I have a very cool Alinker walking bike (pictured) and Nordic sticks for short distances. I guess I just take it day by day and try not to panic too much if a new symptom appears. I'm 68 and plan to live for at least 20 years more 😉

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If I’m any good at all in reading between the lines and reading your overall moods...you sound like an amazing lady to be able to cope so well with so much going on. Especially the pain and being so immobile. My hats off to you. I’m happy for you that you enjoy your work and it keeps you occupied while dealing with so much physically which of course affects us emotionally and every other way. I commend you!!

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dancing1 | @dancing1 | Jul 23, 2022
In reply to @ninette "It's a long story. In short: in the last 7 years I had Cauda Equina Syndrome..." + (show)
@ninette

It's a long story. In short: in the last 7 years I had Cauda Equina Syndrome (2015), a fractured hip (2016), a spinal stroke (2018; for a while I was paralysed from the chest down)), 2 fractured vertebrae and a huge infection at L2 due to part of the facet joint crumbling (probably happened during the fall that also caused my fractured hip, but only discovered late last year). And in the last few years, also dry eyes, nose, mouth, throat...well, basically everything. Process for the Sjogrens diagnosis is still ongoing due to covid (everything takes longer now)- the only thing I still need is the salivary gland biopsy (the CT of the gland showed a disturbed pattern). Sicca has been diagnosed by ENT doctor. This foul small in my nose and taste in mouth started after my own covid infection (March 2020)- could be related, or maybe not. Had tests for covid and diabetes (negative). Nothing wrong with my sinuses either and I have the feeling it's coming from my stomach acid reflux probably due to gastroparesis (apparently some people with Sjogrens get that). Also, because I don't have much saliva, the stomach acid makes a comeback (haha) undiluted, so that might very well be the reason. Starting to change my diet (less coffee and fizzy drinks, less fatty or spicy foods, eat smaller portions more often) and take antacids (Rennie). How do I cope? Some days better than others. Having work that I do with passion helps a lot to distract me from the nerve pain I have since the neurological stuff happened (but not from the foul smell, regretfully) and I have a lovely husband who helps me as much as he can. The thing I regret most is that I can't walk on my own again since I lost my balance due to the stroke. But I have a very cool Alinker walking bike (pictured) and Nordic sticks for short distances. I guess I just take it day by day and try not to panic too much if a new symptom appears. I'm 68 and plan to live for at least 20 years more 😉

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I just read you story and so impressed with your strong positive attitude. I also have sjogrens and schederma . I have an ileostomy but it is a blessing. After years of struggles. The sjogrens is what is making me so week. The least three weeks I have have terrible mouth taste and terrible throat issues. Making it harder to eat as I continue to loose weight. I’m working with a dietician now and have a GI appointment end of august. My last doctor retired at the beginning of Covid. I’ve had gerd and other GI problems for years but the gerd got better this last year. My dry mouth is awful and now this very bad taste. My fatigue and confusion or brain fog is awful. I also keep busy contributing to an ostomy group that before my move to Arizona I was president of. I still do the newsletter for this Northern California group and it is such a help knowing I can still help others. This autoimmune had put me at such high risk during Covid (and from fatigue ) have not seen or been as social as normal which as so saddened me. I also have a wonderful husband that is the only one that really knows what is happening with me. I’m getting very depressed not being able to go as much or eat or socialize. I am very weak. I’m 76 and would love to live much longer and watch my beautiful great grands grow. I have so much family that I love and miss they don’t really know the full extent of my issues. But your story encouraged me so much. Thank you for sharing. I would love to try to walk more with the awful heat here and coyote issue haven’t been exercising I must find some and try to start. Again thank you!

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cantek | @cantek | Jul 23, 2022

I too was struggling with fatigue and my Rheumatoligist suggested I try Accupuncture.
I found a PT who is also trained in China for Accupuncture ( her family has practiced since 1800’s!)
My energy went through the roof! And the depression/ anxiety too!
As well my central nervous system is calm, I no longer shake after Prednisone! I’m so thankful.🥰

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jip499 | @jip499 | Jul 23, 2022
In reply to @robertjgoldenjr "What type of issues are you having with your eyes and mouth?" + (show)
@robertjgoldenjr

What type of issues are you having with your eyes and mouth?

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My eyes are painful and irritated most of the time. I get relief from application of sterile eye drops and twice a day use of Restasis. At night I apply eye ointment. I need to pay attention to my eyes all day to prevent further pain. I use a humidifier in my bedroom at night and goggles over my eyes when I sleep.
My mouth also requires constant maintenance, such as brushing after every meal, and avoidance of sweets and acids. My lips are always dry.

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eileenb1022 | @eileenb1022 | Aug 17, 2022

Good morning,
I hope i prounouned that right. my sinus doctor who i went to for repeated sinus infections which i have been on like 4 different antibiotics which never really helped. i did have a ctscan of my sinuses he said it only showed mild sinus issues. bigger problem which he referred me to a rheumotologist is for sjorgens syndrome. honestly i was hoping it was just allergy related(which i go through in october) but he mainly referred me due to extremely dry mouth which just seems to be getting worse. i drink as much and a lot of water and non caffeine drinks as i can and i constantly have to drink because my mouth is so dried out, sore throat also(i have no more tonsils) and then yesterday i noticed my glands were a bit swollen and it was almost impossible to eat even though i was really hungry. my rheumotology appt if you can believe isnt until feb. there is no way with all this i can wait that long. i see a new pcp not far from this sinus dr. my husband insists i ask for a mri of my throat and glands i cannot wait. im just gonna try to get through the next 2 weeks. since dr's for the last yr havent listened to me im hoping they will let him in to this appt. i also have hypothyroidism which was out of whack for several months but my levels now seem back to normal. i was also diagnosed with linear endrocine cell hyperplasia with the possibility of autoimmune gastritis but then after that GI blew me off so seeing a new one in boston in nov. i dont have faith in that so i want himto redo all the testing but this swollen glands/mouth thing is driving me crazy. anyone here with similiar symptoms or have sjorgen syndrome? did you have a mri or go to a rheumotologist to be diagnosed? can a pcp diagnose you or do you need to see a rheumotologist? any feedback would be much appreciated/ thank you.

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 17, 2022
In reply to @eileenb1022 "Good morning, I hope i prounouned that right. my sinus doctor who i went to for..." + (show)
@eileenb1022

Good morning,
I hope i prounouned that right. my sinus doctor who i went to for repeated sinus infections which i have been on like 4 different antibiotics which never really helped. i did have a ctscan of my sinuses he said it only showed mild sinus issues. bigger problem which he referred me to a rheumotologist is for sjorgens syndrome. honestly i was hoping it was just allergy related(which i go through in october) but he mainly referred me due to extremely dry mouth which just seems to be getting worse. i drink as much and a lot of water and non caffeine drinks as i can and i constantly have to drink because my mouth is so dried out, sore throat also(i have no more tonsils) and then yesterday i noticed my glands were a bit swollen and it was almost impossible to eat even though i was really hungry. my rheumotology appt if you can believe isnt until feb. there is no way with all this i can wait that long. i see a new pcp not far from this sinus dr. my husband insists i ask for a mri of my throat and glands i cannot wait. im just gonna try to get through the next 2 weeks. since dr's for the last yr havent listened to me im hoping they will let him in to this appt. i also have hypothyroidism which was out of whack for several months but my levels now seem back to normal. i was also diagnosed with linear endrocine cell hyperplasia with the possibility of autoimmune gastritis but then after that GI blew me off so seeing a new one in boston in nov. i dont have faith in that so i want himto redo all the testing but this swollen glands/mouth thing is driving me crazy. anyone here with similiar symptoms or have sjorgen syndrome? did you have a mri or go to a rheumotologist to be diagnosed? can a pcp diagnose you or do you need to see a rheumotologist? any feedback would be much appreciated/ thank you.

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Good morning, @eileenb1022. As with any new diagnosis, you have a lot of questions. Well you've come to the right place. You'll notice that I moved your message to this existing discussion:
- Sjogren’s Syndrome – Introduce yourself and meet others https://connect.mayoclinic.org/discussion/sjogrens/

I recommend reading through the discussion from the beginning. Some great advice and you'll meet many members who also have experience with Sjogren's syndrome like @cantek @cmtg @jip499 @ninette @becsbuddy @lilymol @robertjgoldenjr @adlttl123 @dancing1 @oregongirl @jmb73 @rarelybees2889 @marye2 to name a few. Like you, many of them also have multiple autoimmune conditions.

Your questions about seeing a rheumatologist vs your PCP might be answered in this related discussion:
- Is a rheumatologist who I should see about autoimmune conditions? https://connect.mayoclinic.org/discussion/rheumatologist/

Eileen, have you requested to be added to a cancellation list to be seen sooner?

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2 replies
eileenb1022 | @eileenb1022 | Aug 17, 2022
In reply to @colleenyoung "Good morning, @eileenb1022. As with any new diagnosis, you have a lot of questions. Well you've..." + (show)
@colleenyoung

Good morning, @eileenb1022. As with any new diagnosis, you have a lot of questions. Well you've come to the right place. You'll notice that I moved your message to this existing discussion:
- Sjogren’s Syndrome – Introduce yourself and meet others https://connect.mayoclinic.org/discussion/sjogrens/

I recommend reading through the discussion from the beginning. Some great advice and you'll meet many members who also have experience with Sjogren's syndrome like @cantek @cmtg @jip499 @ninette @becsbuddy @lilymol @robertjgoldenjr @adlttl123 @dancing1 @oregongirl @jmb73 @rarelybees2889 @marye2 to name a few. Like you, many of them also have multiple autoimmune conditions.

Your questions about seeing a rheumatologist vs your PCP might be answered in this related discussion:
- Is a rheumatologist who I should see about autoimmune conditions? https://connect.mayoclinic.org/discussion/rheumatologist/

Eileen, have you requested to be added to a cancellation list to be seen sooner?

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Hi and thank you for you help. I will go to the links. I have asked to be put on the cancellation list. Also new pcp is in same city just different hospital I know this hospital has rheumatologist too so maybe when I see new pcp in two weeks I can ask. As far as this other rheumatologist I was a little frustrated. I had to call them 10 days after the referral was sent. Then I had to call three times last week noone was calling me back. They knew why I was being referred and still said Feb 15. That was disappointing
So hoping new pcp can refer me to someone else who can see me earlier. I mean these symptoms have been going on for months every dr got it wrong except for the sinus dr in Boston and symptoms are worsening. Thank you for your help

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eileenb1022 | @eileenb1022 | Aug 17, 2022
In reply to @colleenyoung "Good morning, @eileenb1022. As with any new diagnosis, you have a lot of questions. Well you've..." + (show)
@colleenyoung

Good morning, @eileenb1022. As with any new diagnosis, you have a lot of questions. Well you've come to the right place. You'll notice that I moved your message to this existing discussion:
- Sjogren’s Syndrome – Introduce yourself and meet others https://connect.mayoclinic.org/discussion/sjogrens/

I recommend reading through the discussion from the beginning. Some great advice and you'll meet many members who also have experience with Sjogren's syndrome like @cantek @cmtg @jip499 @ninette @becsbuddy @lilymol @robertjgoldenjr @adlttl123 @dancing1 @oregongirl @jmb73 @rarelybees2889 @marye2 to name a few. Like you, many of them also have multiple autoimmune conditions.

Your questions about seeing a rheumatologist vs your PCP might be answered in this related discussion:
- Is a rheumatologist who I should see about autoimmune conditions? https://connect.mayoclinic.org/discussion/rheumatologist/

Eileen, have you requested to be added to a cancellation list to be seen sooner?

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Did you repost my post or do I have to start over? Sorry, I am just so exhausted

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1 reply
jip499 | @jip499 | Aug 17, 2022
In reply to @cmtg "Recently diagnosed with sjogrens after 7 years almost. Started out with abdominal pain then dry eyes,..." + (show)
@cmtg

Recently diagnosed with sjogrens after 7 years almost. Started out with abdominal pain then dry eyes, dry mouth, sores in mouth that might be related to my lichen planus , joint pain all over, ear ache,.not sure if ear has any relationship. Recently a dr prescribed plaquenel will be on that soon.<br><br><br>

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Plaquenil has been known to help many people with Sjögren’s. But it takes 3 or more months before you feel the beneficial effects.

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