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.

Thought I’d share this article: ‘I struggle every day with the loss of my former life’: what it’s like to live with chronic pain
https://www.theguardian.com/australia-news/2021/jun/29/i-struggle-every-day-with-the-loss-of-my-former-life-what-its-like-to-live-with-chronic-pain
I’m beginning to feel like the people telling their stories in this article. I have Primary Biliary Chonlangitis which caused liver cirrhosis. I received a liver transplant last August. Things were going great. Then in November I developed tremors, still not sure of the cause. Soon after I started having numbness in my right leg and feet, tingling, and sharp pains.

Saw a neurologist in March, he thought it might be Sjogren’s, which was confirmed with a blood test. Saw a rheumatologist PA in May, more tests. Pain in my neck, back, legs, hands, and eyes is tremendous by most afternoons, along with fatigue. I’ve had a sore throat and glands for two months now, along with an ongoing cough. Raynaud’s Syndrome, which I’ve had for a number of years, is a several times a day occurrence now. Saw the rheumatologist PA again, offers no treatment ideas and no insights as to why this has come on so quickly. Neurologist has no solutions, he’s referring me to a neuromuscular MD. I’m trying to be hopeful, but it’s hard.

I’m on Gabapentin, which helps the sharp pains in my feet and legs, but does nothing for the rest of my pain. Can’t get a muscle relaxer or pain med for “as needed” and to help with sleep. I know there’s not a lot that can be done about Sjogren’s, but there are some options I’ve read about. So, for now I walk every morning, do some exercises, and eat well. I have to work and I live by myself, both of which are a struggle.

Obviously my experience plays out around the world and with so many others on Mayo Connects, so I just don’t understand why it’s so difficult to get providers to work together to come up with a treatment, instead of passing us around to the next doctor…

REPLY
@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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Ty!enol makes me very nauseated. Had to quit. Cut back and see if you improve. I was taking it before bedtime and waking up hours later in distress.

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@athenalee

Thought I’d share this article: ‘I struggle every day with the loss of my former life’: what it’s like to live with chronic pain
https://www.theguardian.com/australia-news/2021/jun/29/i-struggle-every-day-with-the-loss-of-my-former-life-what-its-like-to-live-with-chronic-pain
I’m beginning to feel like the people telling their stories in this article. I have Primary Biliary Chonlangitis which caused liver cirrhosis. I received a liver transplant last August. Things were going great. Then in November I developed tremors, still not sure of the cause. Soon after I started having numbness in my right leg and feet, tingling, and sharp pains.

Saw a neurologist in March, he thought it might be Sjogren’s, which was confirmed with a blood test. Saw a rheumatologist PA in May, more tests. Pain in my neck, back, legs, hands, and eyes is tremendous by most afternoons, along with fatigue. I’ve had a sore throat and glands for two months now, along with an ongoing cough. Raynaud’s Syndrome, which I’ve had for a number of years, is a several times a day occurrence now. Saw the rheumatologist PA again, offers no treatment ideas and no insights as to why this has come on so quickly. Neurologist has no solutions, he’s referring me to a neuromuscular MD. I’m trying to be hopeful, but it’s hard.

I’m on Gabapentin, which helps the sharp pains in my feet and legs, but does nothing for the rest of my pain. Can’t get a muscle relaxer or pain med for “as needed” and to help with sleep. I know there’s not a lot that can be done about Sjogren’s, but there are some options I’ve read about. So, for now I walk every morning, do some exercises, and eat well. I have to work and I live by myself, both of which are a struggle.

Obviously my experience plays out around the world and with so many others on Mayo Connects, so I just don’t understand why it’s so difficult to get providers to work together to come up with a treatment, instead of passing us around to the next doctor…

Jump to this post

Hello athenalee I was told I have Sjögren’s and I was giving treatment for years with all the pain and stuff that was going on I was on prednisone, metatrexate, hydroxychloroquine and folic acid but what I want to know is what blood test you take to fine out you have Sjögren’s? Because my Rheumatolgist wouldn’t do a blood test and I ask her to do it just to confirm but she wouldn’t she just use the fact that am having pains, dry mouth and dry eyes to say that is my problem so I decided to get a second opinion and he did this blood test smith antibodies and Sjögren’s AB,anti-ss-a/-ss-b and they both came up <0.2 so am at this cross road and I don’t know where to turn because I have been living in pain for years and I have been to so much doctor and not much help Tylenol is my best better and I don’t take it often but when the pain is really unbearable I take especially when I have to go to work. I hope you get some meds to soon

REPLY
@suzetteirons

Hello athenalee I was told I have Sjögren’s and I was giving treatment for years with all the pain and stuff that was going on I was on prednisone, metatrexate, hydroxychloroquine and folic acid but what I want to know is what blood test you take to fine out you have Sjögren’s? Because my Rheumatolgist wouldn’t do a blood test and I ask her to do it just to confirm but she wouldn’t she just use the fact that am having pains, dry mouth and dry eyes to say that is my problem so I decided to get a second opinion and he did this blood test smith antibodies and Sjögren’s AB,anti-ss-a/-ss-b and they both came up <0.2 so am at this cross road and I don’t know where to turn because I have been living in pain for years and I have been to so much doctor and not much help Tylenol is my best better and I don’t take it often but when the pain is really unbearable I take especially when I have to go to work. I hope you get some meds to soon

Jump to this post

Hello @suzetteirons, I’m very sorry you continue to struggle. Sjogren’s is tough to diagnose as individuals vary as to if they test positive for anyone indicator. And, the symptoms also vary widely. I was diagnosed by a neurologist I was referred to because I have numbness in all extremities, tremors, tingling, and severe pain.

The other problem is finding a rheumatologist that knows about Sjogren’s and will treat you. Thus far I’ve gotten no where with the rheumatology department at Dartmouth Hitchcock, which is the go to regional medical center in my area. Mayo, John Hopkins, and other larger medical centers offer a team approach to diagnose and treat Sjogren’s. It’s too bad more hospitals don’t do this.

Below is a list of tests:
– Blood and urine tests, to look for the presence of antibodies common in Sjögren’s syndrome. The results of an ANA (antinuclear antibody) test will determine if you have an autoimmune disorder.
– Other blood indicators, antibodies p, B vitamin levels
eAG Calc
Folate (Folic Acid), Serum
Homocysteine, Total, P
Hgb A1c
SS-B/La Ab, IgG
SS-A/Ro Ab, IgG
Sm Ab, IgG
RNP Ab, IgG
Jo 1 Ab, IgG
DNA Double-Stranded Ab, IgG
Centromere Ab, IgG
Scl 70 Ab, IgG
Methylmalonic Acid, QN
Vitamin B12 Lvl
– Schirmer’s test, to see if your tear glands are producing enough tears to keep your eyes moist. Ocular surface staining to look closely at the surfaces of your eyes for damage and dryness.
– Salivary gland function scans, which look at the glands on the sides of your neck, below your ears and under your jaw.
– A biopsy of your lip to look for inflammation of the glands that produce saliva and tears. This test can determine the type of inflammation and the severity. A biopsy of the lip is performed because the salivary glands just under the lip’s inner surface are the easiest glands to access.
– Sialometry, which measures the flow of saliva.
– Ultrasonography of the major salivary glands to reveal characteristic structural changes that can aid in diagnosis.

I have three autoimmune diseases, one of which is associated with Sjogren’s. I do have positive ANA and I tested positive for SSA/RO Ab IgA . I have not had the other tests as my focus has been on searching for treatment for neuropathy and severe muscle pain. I am having increasing eye issues, so will try to be referred to an ophthalmologist.

There are several websites with excellent resources, one is Sjogren’s Advocate and another is the Sjogren’s Foundation. I have adopted a strict diet, no sugar, white flour, etc. I also exercise and walk a least two miles a day. My research has indicated that exercise at least helps with fatigue. I am not on any treatment for Sjogren’s.

I don’t think long term prednisone is a good thing, but perhaps ask your provider to refer you for the other tests. It doesn’t to me make since to keep treating if it’s not more firmly identified that you have Sjogren’s. Sjogren’s has symptoms similar to other diseases. So, I’ve also been tested for lupus, RA, and other illnesses to rule these out. The Sjogren’s Foundation has a treatment protocol guide which is a good resource.

Good luck and please let me know how you make out.

REPLY
@suzetteirons

Hello athenalee I was told I have Sjögren’s and I was giving treatment for years with all the pain and stuff that was going on I was on prednisone, metatrexate, hydroxychloroquine and folic acid but what I want to know is what blood test you take to fine out you have Sjögren’s? Because my Rheumatolgist wouldn’t do a blood test and I ask her to do it just to confirm but she wouldn’t she just use the fact that am having pains, dry mouth and dry eyes to say that is my problem so I decided to get a second opinion and he did this blood test smith antibodies and Sjögren’s AB,anti-ss-a/-ss-b and they both came up <0.2 so am at this cross road and I don’t know where to turn because I have been living in pain for years and I have been to so much doctor and not much help Tylenol is my best better and I don’t take it often but when the pain is really unbearable I take especially when I have to go to work. I hope you get some meds to soon

Jump to this post

@suzetteirons I’m sorry you’ve had so many years in pain and no answers. And now you have some results from a blood test done by a second doctor. What has this second doctor said about what’s going on?

REPLY
@athenalee

Hello @suzetteirons, I’m very sorry you continue to struggle. Sjogren’s is tough to diagnose as individuals vary as to if they test positive for anyone indicator. And, the symptoms also vary widely. I was diagnosed by a neurologist I was referred to because I have numbness in all extremities, tremors, tingling, and severe pain.

The other problem is finding a rheumatologist that knows about Sjogren’s and will treat you. Thus far I’ve gotten no where with the rheumatology department at Dartmouth Hitchcock, which is the go to regional medical center in my area. Mayo, John Hopkins, and other larger medical centers offer a team approach to diagnose and treat Sjogren’s. It’s too bad more hospitals don’t do this.

Below is a list of tests:
– Blood and urine tests, to look for the presence of antibodies common in Sjögren’s syndrome. The results of an ANA (antinuclear antibody) test will determine if you have an autoimmune disorder.
– Other blood indicators, antibodies p, B vitamin levels
eAG Calc
Folate (Folic Acid), Serum
Homocysteine, Total, P
Hgb A1c
SS-B/La Ab, IgG
SS-A/Ro Ab, IgG
Sm Ab, IgG
RNP Ab, IgG
Jo 1 Ab, IgG
DNA Double-Stranded Ab, IgG
Centromere Ab, IgG
Scl 70 Ab, IgG
Methylmalonic Acid, QN
Vitamin B12 Lvl
– Schirmer’s test, to see if your tear glands are producing enough tears to keep your eyes moist. Ocular surface staining to look closely at the surfaces of your eyes for damage and dryness.
– Salivary gland function scans, which look at the glands on the sides of your neck, below your ears and under your jaw.
– A biopsy of your lip to look for inflammation of the glands that produce saliva and tears. This test can determine the type of inflammation and the severity. A biopsy of the lip is performed because the salivary glands just under the lip’s inner surface are the easiest glands to access.
– Sialometry, which measures the flow of saliva.
– Ultrasonography of the major salivary glands to reveal characteristic structural changes that can aid in diagnosis.

I have three autoimmune diseases, one of which is associated with Sjogren’s. I do have positive ANA and I tested positive for SSA/RO Ab IgA . I have not had the other tests as my focus has been on searching for treatment for neuropathy and severe muscle pain. I am having increasing eye issues, so will try to be referred to an ophthalmologist.

There are several websites with excellent resources, one is Sjogren’s Advocate and another is the Sjogren’s Foundation. I have adopted a strict diet, no sugar, white flour, etc. I also exercise and walk a least two miles a day. My research has indicated that exercise at least helps with fatigue. I am not on any treatment for Sjogren’s.

I don’t think long term prednisone is a good thing, but perhaps ask your provider to refer you for the other tests. It doesn’t to me make since to keep treating if it’s not more firmly identified that you have Sjogren’s. Sjogren’s has symptoms similar to other diseases. So, I’ve also been tested for lupus, RA, and other illnesses to rule these out. The Sjogren’s Foundation has a treatment protocol guide which is a good resource.

Good luck and please let me know how you make out.

Jump to this post

Thank you so much for these info am going to look into them and I hope get more help in your Sjögren’s fit. Talk to you soon

REPLY
@becsbuddy

@suzetteirons I’m sorry you’ve had so many years in pain and no answers. And now you have some results from a blood test done by a second doctor. What has this second doctor said about what’s going on?

Jump to this post

He only say I don’t have Sjögren’s but I have a lot of inflammation in my body and it can be from a common cold to cancer and 300 other things in between.

REPLY
@suzetteirons

He only say I don’t have Sjögren’s but I have a lot of inflammation in my body and it can be from a common cold to cancer and 300 other things in between.

Jump to this post

@suzetteirons Well, it seems to me that the doctor you saw wasn’t much help. Can you go to a large medical center or university medical center? They should be able to help. That’s what i had to do. The local doctors, when they finally paid attention, didn’t know what they were dealing with. My husband was able to get an appointment at a university hospital in a city near us. They were able to diagnose my problem and still direct my care. Is there a university hospital or major medical center somewhere near you?
If you might like to be seen at 1 of the 3 Mayo Clinic’s, here is a link. http://mayocl.in/1mtmR63

REPLY
@suzetteirons

He only say I don’t have Sjögren’s but I have a lot of inflammation in my body and it can be from a common cold to cancer and 300 other things in between.

Jump to this post

I agree with Becky. If the doctor doesn’t think you have Sjogren’s, you certainly have something. So, more tests would be in order to find a diagnosis. Don’t give up!

REPLY
@suzetteirons

Hello athenalee I was told I have Sjögren’s and I was giving treatment for years with all the pain and stuff that was going on I was on prednisone, metatrexate, hydroxychloroquine and folic acid but what I want to know is what blood test you take to fine out you have Sjögren’s? Because my Rheumatolgist wouldn’t do a blood test and I ask her to do it just to confirm but she wouldn’t she just use the fact that am having pains, dry mouth and dry eyes to say that is my problem so I decided to get a second opinion and he did this blood test smith antibodies and Sjögren’s AB,anti-ss-a/-ss-b and they both came up <0.2 so am at this cross road and I don’t know where to turn because I have been living in pain for years and I have been to so much doctor and not much help Tylenol is my best better and I don’t take it often but when the pain is really unbearable I take especially when I have to go to work. I hope you get some meds to soon

Jump to this post

you can do a mouth biopsy.

REPLY
@quilterdar

you can do a mouth biopsy.

Jump to this post

I had one set up but then I was not feeling good so did not have it done yet. But Doc said that it was the best way to get a diagnosis for Sjogren's. Some come back not positive if they have not had it for long, but then the second one it it positive. research it on line, see what you think.

REPLY

Sjogrens does not always show up on blood tests. About 20% of people with it are "seronegative" that is why the European criteria was developed. Also Sjogrens is now called "Sjogren's disease" not "Sjogren's Syndrome" The criteria is available on the website for the Sjogren's Assn. Good luck!

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