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.

ninette | @ninette | Feb 18, 2022
In reply to @becsbuddy "@ninette i cannot imagine having a foul smell and taste around me. How distressing for you!..." + (show)
@becsbuddy

@ninette i cannot imagine having a foul smell and taste around me. How distressing for you! Is your physician able to give you any help for dealing with this? And how long has all of this been going on?
This link to Mayo’s website might have some good information for you.
https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216
Can you tell us a little more about yourself and how you’re coping?

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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 😉
REPLY
5 replies
lilymol | @lilymol | Feb 18, 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 😉

Jump to this post

Love your ride!!!

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 19, 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 😉

Jump to this post

@ninette your bike looks so interesting and fun! I was so intrigued that I had to look it up! Is it easy to use even though you’ve lost your sense of balance? Can you tell us more about it?!

REPLY
1 reply
ninette | @ninette | Feb 19, 2022
In reply to @becsbuddy "@ninette your bike looks so interesting and fun! I was so intrigued that I had to..." + (show)
@becsbuddy

@ninette your bike looks so interesting and fun! I was so intrigued that I had to look it up! Is it easy to use even though you’ve lost your sense of balance? Can you tell us more about it?!

Jump to this post

It's heaven sent- well, after my butt got used to it. Yes, it's especially good for people without a sense of balance since you're sitting on the saddle, it has 3 wheels (not easy to fall, although I managed once in 3 years) and it's very sturdy. It doesn't have pedals, it really is a bike where you use your feet (or foot, you can also power it with one leg), getting your circulation going, building stamina, meeting people while you sit at eye level with them (when you sit in a wheelchair, people tend to talk over your head), you have less pain (esp in the back and hips) and you can go places you wouldn't be able to while walking if that's not your strongest point. People travel with them, take them on planes (in the hold- just 'cycle' up to the boarding point), in museums, shopping malls... I love mine a lot. And on a good day I'm pretty fast. Today I went for a ride in the park next to me home to check out the damage that storm Eunice has caused last night. I can walk maybe 50 meter, Alinker 10 times that and with help a lot more. Pity I can't put a video here.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 19, 2022
In reply to @ninette "It's heaven sent- well, after my butt got used to it. Yes, it's especially good for..." + (show)
@ninette

It's heaven sent- well, after my butt got used to it. Yes, it's especially good for people without a sense of balance since you're sitting on the saddle, it has 3 wheels (not easy to fall, although I managed once in 3 years) and it's very sturdy. It doesn't have pedals, it really is a bike where you use your feet (or foot, you can also power it with one leg), getting your circulation going, building stamina, meeting people while you sit at eye level with them (when you sit in a wheelchair, people tend to talk over your head), you have less pain (esp in the back and hips) and you can go places you wouldn't be able to while walking if that's not your strongest point. People travel with them, take them on planes (in the hold- just 'cycle' up to the boarding point), in museums, shopping malls... I love mine a lot. And on a good day I'm pretty fast. Today I went for a ride in the park next to me home to check out the damage that storm Eunice has caused last night. I can walk maybe 50 meter, Alinker 10 times that and with help a lot more. Pity I can't put a video here.

Jump to this post

@ninette, you can post videos. Send me a message using this form if you're having issues linking to a Youtube or Vimeo video: https://connect.mayoclinic.org/contact-a-community-moderator/

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jip499 | @jip499 | Jul 7, 2022
In reply to @cmtg "Wanted to know if anyone has nausea from Sjogrens? I have nausea most days, take Tylenol..." + (show)
@cmtg

Wanted to know if anyone has nausea from Sjogrens? I have nausea most days, take Tylenol 3 or 4 times a day for ear aches wondering if the nausea is from Tylenol.

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Tylenol 3 has hydrocodone, an opiate. Your nausea is probably from hydrocodone component.

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jip499 | @jip499 | Jul 21, 2022
In reply to @johnwburns "Sorry to hear that. Sjogren's is a big topic. How were you diagnosed, as in what..." + (show)
@johnwburns

Sorry to hear that.
Sjogren's is a big topic.
How were you diagnosed, as in what were the criteria, positive ANA, positive anti-Ro, salivary gland biopsy etc?
What treatment(s) have you been given, if any?
Do you have any commonly co-occurring autoimmune illnesses such as Hashimoto's Thyroiditis?

Overview might be of help:

http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275

Thanks

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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.

REPLY
1 reply
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.

Jump to this post

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

REPLY
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 😉

Jump to this post

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!!

REPLY
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 😉

Jump to this post

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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