1. < Autoimmune Diseases

Possible Sjogrens Disease

Posted by j77 @j77, Apr 3 10:20am

I have had an undiagnosed illness for over 2 years.No Doctor can figure it out.I have many symptoms,but two major ones are extremely dry eyes that feel like sandpaper are squinty,lack muscle movement,blurry with floaters and can barely be in the sun.I also have muscle weakness all throughout my body especially my trunk of the body/pelvis and hips.I can barely walk.I have gained a ton of weight in the last year and my upper arms and legs are so big and inflamed.My upper arms remind me of how they were before I was diagnosed with Hashimito's Disease.It is not normal fat,but tons of inflammation.This was all brought on after an iron infusion/possibly covid.Does anyone with Sjogren's have extreme muscle weakness throughout the body?Even the muscles in the trunk to go to the bathroom are completely gone.Gastroparesis is not involved either.I was already checked for that.I went to the Eye Doctor and she performed a test to determine the dryness of my eye and I think it waa a 1.She had only see one other person with eyes as dry as mine.I have only had thyroid disease for years and I only take 50 mg of synthroid.I don't take any other Medication.We have alot of Lupus on both sides of the Family including my Mother.The Rheumatologists I have seen tell me that my symptoms are not being caused by an Autoimmune Disease.I have had a few positive ANA's with a high speckled pattern of 1.80,but I have had a few negative ANA's as well.I was very Healthy besides heavy periods from Anemia before this all came on.Any help would be appreciated.

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celia16 | @celia16 | Apr 6 7:39am
In reply to @jackielb "I had a lip biopsy this week and it came back negative (blood work was negative..." + (show)
@jackielb

I had a lip biopsy this week and it came back negative (blood work was negative also.). I have suffered with dry eyes for a long time. I guess it's not Sjogren's but just Blepharitis . Dryness worsened after Lasik surgery on eyes. I finally opted for for Punctual Plugs for eyes. So far so good. I use Refresh Optive Mega 3. These have helped the most. I use 1 vial a day. I also wash my eyes with Ocusoft foaming cleanser - Amazon. Then I follow with Hypochlorous spray on eye lashes while eyes closed. Started using Refresh PM ointment @ night after using Cequa. Then I apply the warm compresses for 4 minutes and my eyes feel great the next day. I think that's what Miebo does.

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Thanks for the tips. I think people who are actually dealing with dry eye daily know the most about daily care. I’m going to try what you describe.

I’ve had 2 blepharoplasty surgeries and suspect they caused my condition. The first one (cosmetic only to remove skin and fat on upper and lower lids) was done quite a few years ago and then I had one (upper lift) performed in 2018 due to ptosis. Had tendon raised on upper lids. And a revision on the left eye, as it was too high initially. I didn’t have dry eye before my first surgery.

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lkirnbauer | @lkirnbauer | Apr 6 9:32am
In reply to @j77 "Thankyou for letting me know!Maybe I will have to end up taking that too just to..." + (show)
@j77

Thankyou for letting me know!Maybe I will have to end up taking that too just to get my weight down.I am worried all this additional weight is going to do so much harm to my body.I have always been a health weight so it is not use to it.Cushings is pretty rare.It is a disease with the Adrenal Glands where the body produces too much cortisol.They are checking me for it because of some of my test results and the extreme weight Gain.

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It’s worth trying, as long as it doesn’t cause any other issues! I too had always been at a pretty normal weight, needing to loose a few lbs., but when I started to put this other type of fat onto my body, it came fast and daily I would be gaining! I knew it wasn’t normal.
I did read up on Cushing and I’m so sorry you suffer from it. I do hope your doctor puts you on the Cytomel, it did the job for me, but watch for shakiness or tremors. Keep me posted on your progress. Good luck! .

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2 replies
j77 | @j77 | Apr 6 9:47am
In reply to @lkirnbauer "It’s worth trying, as long as it doesn’t cause any other issues! I too had always..." + (show)
@lkirnbauer

It’s worth trying, as long as it doesn’t cause any other issues! I too had always been at a pretty normal weight, needing to loose a few lbs., but when I started to put this other type of fat onto my body, it came fast and daily I would be gaining! I knew it wasn’t normal.
I did read up on Cushing and I’m so sorry you suffer from it. I do hope your doctor puts you on the Cytomel, it did the job for me, but watch for shakiness or tremors. Keep me posted on your progress. Good luck! .

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Thankyou so much! I am definitely going to ask my Doctor about the Cytomel when I meet with him again.I definitely know the weight on me is not normal at all.I know because of other symptoms from my illness I can't really exercise,but at the same time the weight is piling on like I am nonstop eating.That is not the case at all.It is definitely something out of my control.

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1 reply
celia16 | @celia16 | Apr 9 7:48pm
In reply to @lkirnbauer "It’s worth trying, as long as it doesn’t cause any other issues! I too had always..." + (show)
@lkirnbauer

It’s worth trying, as long as it doesn’t cause any other issues! I too had always been at a pretty normal weight, needing to loose a few lbs., but when I started to put this other type of fat onto my body, it came fast and daily I would be gaining! I knew it wasn’t normal.
I did read up on Cushing and I’m so sorry you suffer from it. I do hope your doctor puts you on the Cytomel, it did the job for me, but watch for shakiness or tremors. Keep me posted on your progress. Good luck! .

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I take Levothyroxine and it really helped me with energy. Before, I was glued to the sofa. I was so exhausted, I could barely make it to work. I gained weight too. That med gave me back my energy.

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lkirnbauer | @lkirnbauer | Apr 10 8:30am
In reply to @j77 "Thankyou so much! I am definitely going to ask my Doctor about the Cytomel when I..." + (show)
@j77

Thankyou so much! I am definitely going to ask my Doctor about the Cytomel when I meet with him again.I definitely know the weight on me is not normal at all.I know because of other symptoms from my illness I can't really exercise,but at the same time the weight is piling on like I am nonstop eating.That is not the case at all.It is definitely something out of my control.

Jump to this post

You’re welcome! I hope it works for you and you begin feeling better. All the best!

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