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 group.

Great resource, thank you.Both me and my daughter have it, still lots to learn.

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@ninette

I'm in the process of getting the official diagnosis of Sjogrens- it's not in my blood, but I don't produce any tears, have very dry eyes, nose, mouth, skin, everything, my salivary gland CT came back as 'bad' and I will have a biopsy of the gland next month. I also have neurological, muscle and joint issues. One thing that bothers me lately is a foul taste in my mouth and ditto smell in my nose, very sweet and sickly. It comes closest to the smell of fresh (not infected) urine. No headache or sinus pressure, so maybe the dry sinuses are to blame? It drives me nuts. I put some mint cream under my nose to try and mask the smell, I drink a lot of water each day, but what else can I do? Does anybody recognise this? Thank you all for your feedback!

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@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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@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 😉

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@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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Love your ride!!!

REPLY
@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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@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?!

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@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?!

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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.

REPLY
@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.

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@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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