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Sjogren's Question
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 Yes, I have Sjogrens. I was diagnosed a few years ago. My results were positive but I have seen a lot of people whose antibodies came back negative but who still have Sjo. You can get a lip biopsy done.
I do drink a lot of water mixed with coconut water or an electrolyte. That helps but it is VERY easy to move into dehydration so be very mindful every single day. Also try to sip water through the night so you don't wake up already depleted.
Also, check out Sjogrens Foundation. There are a lot of resources on their website. You will learn it is much more the Sicca (which is dryness).
Feel free to reach out. I am happy to share my experiences.
Dana
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1 Reaction@jrkittel ok thank you I’ll see what the rheumatologist says when I go see her.
@danarosef thank you, I would love to sip water at night but I use mouth tape to keep from snoring,
@jrkittel have you experienced constapation too?.it all seem to start with the constipation, then escalated from there.
@issy58 I haven't experienced constipation. I was originally referred to a rheumatologist 15 years ago because I had a swollen knuckle. He checked all my joints, asked a lot of questions, and took some blood. The fact that I had dry eyes, coupled with a positive blood test, led to the Sjogren's diagnosis. The dry mouth came later, then the peripheral neuropathy and autonomic neuropathy. I have been using Biotene Dry Mouth moisturizing gel before going to bed. It does help some but, like the pilocarpine and cevimeline, does not provide complete relief. (By the way, the swollen joint was not related to Sjogren's. I had apparently overused that finger doing some home maintenance work. It got better on its own.)
@issy58 Try Xylimelts. You put them on the roof of your mouth when you sleep. They are very safe and effective.
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1 Reaction@issy58 Drink more fluids!! It is makes a huge difference.
I have morning decaf green tea (usually two cups)
a 40oz water mixed with coconut water
a second 40oz water jug in the afternoon, sometime I add a sugar free electrolyte table
a third 40 oz just water that I take to bed
this is in addition to the water we get from our foods and it never feels like enough.
In the heat it is not!
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1 Reaction@j77 I had a blood test and a lip biopsy that came out negative. They can be false positive false negative. My rheumatologist diagnosed me with sjogren's disease. My ENTs are the one that did the blood test and the lip biopsy and they say nope you don't have it. Then my rheumatologist checked all my blood test and all my symptoms and she says you sure do have it. So watch out. Go to a doctor until you get the answers that you know are true for you.
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1 ReactionThank you so much for responding! Every time I go to a Rhuematologist appointment I have them run the sane labs again hoping something shows up. It is so tough when you know something is so wrong with your body, but you can't get the treatment until it shows up in the Bloodwork.
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1 Reaction@j77 I was very lucky with my rheumatologist she was open to looking outside the box.