Sjogren’s Syndrome – Introduce yourself and meet others

@hopeful33250 Thanks for the compliment Teresa. Sure, share it. AND I am just realizing another coping mechanism I have learned to use to my advantage and comfort for others. I call it 'Patterned Living'. As I get older, the more I follow this thing. I learned it in my early years. In a large family, it is especially important. When Doctor Sarazin held me up to show me to my parent, he told my folks they should not expect me to see my third birthday because I was a "floppy baby". But as soon as possible, I started working and playing hard. I carried wood for the fire, pulled weeds in the garden, then milked cows and fed pigs and horses, then irrigated, and harvested crops. And went to school, played sports, held many heavy labor jobs. Ran half-marathons occasionally. Played, coached and officiated football until I hit 60.The point is, that nearly everything I did had to have a pattern. I still do that. I develop and adjust patterns which make it easier and more appropriate for myself, my family, my employers, and, yes, especially for the congregations I have served as pastor, executive, counselor, grant and loan writer, and now in retirement with a bucket full of diseases coming to fulfillment. For instance, I eat about the same thing for meals and needed snacks, every day. Simple breakfast sandwich. Green salad for lunch. Meat and veggies for dinner. Snack of almonds for snack. Each morning I have the same routine. Take me about ten minutes to get my body out of bed. Wash my hands. Use the catheter. Take my meds, mostly pain killers and heart. Record BP, Pulse, any blood flow. Measure my glucose with my Libre. Take insulin. Write it all down. Shower, especially with Tar Soap in my hear to take out the sticky dandruff. Put Noxema or some other cream all over my face to ease the pain of the vascular breakout Then breakfast, and read my Email, and write in my Amyloidosis book. You see how it goes. By following this pattern I can feel free about breaking loose and doing something different when it comes by. I walk around the block when I can, if the weather and the pain are not too bad. But if I am late getting home, Donella knows where to look for me. Anyway, this patterned living helps me, helps Donella, helps the docs, etc.

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@hopeful33250 Thanks for the compliment Teresa. Sure, share it. AND I am just realizing another coping mechanism I have learned to use to my advantage and comfort for others. I call it 'Patterned Living'. As I get older, the more I follow this thing. I learned it in my early years. In a large family, it is especially important. When Doctor Sarazin held me up to show me to my parent, he told my folks they should not expect me to see my third birthday because I was a "floppy baby". But as soon as possible, I started working and playing hard. I carried wood for the fire, pulled weeds in the garden, then milked cows and fed pigs and horses, then irrigated, and harvested crops. And went to school, played sports, held many heavy labor jobs. Ran half-marathons occasionally. Played, coached and officiated football until I hit 60.The point is, that nearly everything I did had to have a pattern. I still do that. I develop and adjust patterns which make it easier and more appropriate for myself, my family, my employers, and, yes, especially for the congregations I have served as pastor, executive, counselor, grant and loan writer, and now in retirement with a bucket full of diseases coming to fulfillment. For instance, I eat about the same thing for meals and needed snacks, every day. Simple breakfast sandwich. Green salad for lunch. Meat and veggies for dinner. Snack of almonds for snack. Each morning I have the same routine. Take me about ten minutes to get my body out of bed. Wash my hands. Use the catheter. Take my meds, mostly pain killers and heart. Record BP, Pulse, any blood flow. Measure my glucose with my Libre. Take insulin. Write it all down. Shower, especially with Tar Soap in my hear to take out the sticky dandruff. Put Noxema or some other cream all over my face to ease the pain of the vascular breakout Then breakfast, and read my Email, and write in my Amyloidosis book. You see how it goes. By following this pattern I can feel free about breaking loose and doing something different when it comes by. I walk around the block when I can, if the weather and the pain are not too bad. But if I am late getting home, Donella knows where to look for me. Anyway, this patterned living helps me, helps Donella, helps the docs, etc.

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Your Pattern idea is super!! I "scan" what the deal is when I get up and take care of that. But the rest of the day is similar to what you are doing to keep on the right track. Now and then, I deviate from this, but best to stick to the usual. I do a daily walk, PT stretches, hydrate and take meds in addition to two meals a day. I try to remain non-processed, avoid sugar, moderate wheat, dairy, etc.

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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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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…

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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

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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

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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.

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