Sjogren's Question

Posted by j77 @j77, Mar 3, 2025

Does anyone have Small Fiber Neuropathy with Sjogren's? Also trouble walking? I have been ill for the last few years with no answers. I had anemia for years from severe periods and had a one time strong iron infusion and had a reaction days later and have never been the same.I was also at the Beach around the same time a few years ago and believe I possibly picked up covid too.I believe I am dealing with possibly Sjogren's or something similar with Long Covid as well. I have squinty dry eyes with blurry vision and permanent floaters that can't be in the sun. Dry mouth with trouble swallowing, sinuses, hair and skin. I do have trouble eating foods like bread or thicker foods where I can choke sometimes. I have weak ankles, feet, hands, wrists and fingers. I have the numbness, but trouble flipping a light switch on a lamp off.,I have a weak torso especially diaphram and pelvis and big belly.I have big inflamed upper arms and legs. When I sit in a bath my belly pushes up into my Diaphram and my arms are pushed forward.I need help getting out of the bath and have to use my arms to get up from a seated position. I can lift my arms, but they get very tired easily. It would be too much to dry my hair because I just don't have the upper arm strength to do it
I remember I had weak upper arms before being diagnosed wih thyroid disease years ago too. I have trouble walking because I just don't have the core strength. My arms and legs are strong, but weak at the same time.I think it confuses the Doctors becayse of that.I have had so many tests, but they have not found much.It is not MS, Muscular Dystrophy, Myasthenia Gravis, ALS, etc. I have had a few positive ANA's with a low high speckled pattern, but the Rhuematologists have dismissed Autoimmune bring involved. I have had thyroid disease for a long time. Since this all came on I have high glucose, but not diabetes. There is alot of Lupus, Thyroid and one case of Sjogren's in my Family. I am just wondering if anyone has NeuroSjogren's or has experienced any of these symptoms. I am thinking the years of anemia, thyroid disease, stressful job, too much exercise and than possibly covid set this off. I did have the ER check for Epstein Barr at the beginning of this and my titters were sky high. The same thing happened before I was diagnosed with Thyroid Disease so I know there must be some kind of connection.

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issy58 | @issy58 | Apr 11 9:22am

In reply to @danarosef "@issy58 Drink more fluids!! It is makes a huge difference. I have morning decaf green tea..." + (show)

@danarosef I thought I was drinking a lot.idrink 400 liters of water 2 times a day,caffeine free sugar free A N W.somtimes water drys my mouth, I drink 1 full glass of water when I wake up. Then have my 1 cup of coffee. Then water n I sip on my flat soda all day long with water. Do you drink your water during the night? I can’t as I use mouth tape. Do you get painful bumps on your tongue? I’ll go 2 weeks without them. Then I’ll go a week with them. I’m trying to slow down on the flat soda. I use the biotine mouth wash, dry mouth toothpaste, dry mouth mints, sugar free hard candy, it all works for a little while till it’s gone then I get the dry mouth back. I just don’t know what else to do.thank you for replying.

issy58 | @issy58 | Apr 11 9:23am

In reply to @danarosef "@issy58 Try Xylimelts. You put them on the roof of your mouth when you sleep. They..." + (show)

@danarosef will try that thank you.🙏

artemis1886 | @artemis1886 | Apr 11 9:58am

I had the lip biopsy done. The glands were so inflamed got a diagnosis before sent to the lab. The glands were so swollen they popped out. The ENT doctor didn’t even have to cut them out.
Went to the eye doctor and tested positive with the eye test. I am on prescription eyedrops. Xiildra.

danarosef | @danarosef | Apr 11 10:16am

In reply to @issy58 "@danarosef I thought I was drinking a lot.idrink 400 liters of water 2 times a day,caffeine..." + (show)

@issy58 trying to send you info but this system is not allowing me too! guess it is safety feature. you can look up the sjogrens foundation. they have a patient conference and yesterday they gave a talk on this. sorry I can't attach it here 🙁

salinanwhispers | @salinanwhispers | Apr 11 2:11pm

Hi All,

I joined the sjogrens.org since last December. I truly encourage anyone living with sjogrens to consider becomomg a member. The organization offers a wide range of helpful resources and support. They are also currently conducting a clinical trial/Study in Florida, Tennesse, Texa & Utah which is expected to run through 2029. If you happen to live in one of those states, you may be eligible to participate. I would have loved to volunteer myself, but unfortunately I live in California.

I also choose to donate to the foundation in hope someday there will be a cure for all of us affected by this difficult autoimmune disease. Sadly, Sjogrens disease is not widely recognized as conditions like MS, RA or Rupus which means it receives far less research funding. Their most recent grant was around $150k-an amount that can be used up very quickly in medical search. If you are able, I encourge everyone to consider donating so that the organization can continue its work & hopefully move us closer to a cure soon.

Just to be clear, I am simply a member who believes that if we come together for a good cause, we will all benefit from the progress made. Thanks for taking the time to read this.

Colleen Young, Connect Director | @colleenyoung | 5 days ago

In reply to @danarosef "@issy58 trying to send you info but this system is not allowing me too! guess it..." + (show)

@danarosef, you're right. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

I believe you wanted to share the URL to the Sjogrens Foundation's website. Allow me to post it for you.
https://sjogrens.org/
Did you attend the patient conference on the weekend?