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 4 11:15pm

I pay a fortune out of pocket for these Systane products! Those tiny little tubes are almost $15.00 each! It’s criminal. I wish it was prescription, as then it would be covered. It’s just petroleum jelly mineral oil…..sterilized.

j77 | @j77 | Apr 5 12:00am

In reply to @celia16 "I pay a fortune out of pocket for these Systane products! Those tiny little tubes are..." + (show)

Oh My Goodness!That is crazy!Way too much!

celia16 | @celia16 | Apr 5 6:55am

In reply to @j77 "Oh My Goodness!That is crazy!Way too much!" + (show)

Actually, I prefer the Walgreen’s brand PM Lubricant for eyes that’s about $9.00 per tube, but it’s difficult to find. It was actually out of stock online for months. It’s just become available again. Will need to get a few. It works better for me for some reason.

bberg2019 | @bberg2019 | Apr 5 7:17am

In reply to @celia16 "The muscle issues were a mystery for me. I never got a diagnosis. My brother has..." + (show)

I use the nasal spray tyrvaya. (I think that’s how you spell it) It has actually helped a lot.

celia16 | @celia16 | Apr 5 7:27am

In reply to @bberg2019 "I use the nasal spray tyrvaya. (I think that’s how you spell it) It has actually..." + (show)

Good to know. What about side effects?

lkirnbauer | @lkirnbauer | Apr 5 12:17pm

In reply to @j77 "I just looked up Cytomel because I did not know what it was.So your doctor used..." + (show)

Yes, I used Cytomel in addition to my Synthroid. It took my weight down, but then I began getting shaken on it, so we weened me off and now I’m just taking Synthroid. I’m not familiar with Cushing Disease, but I will be looking it up.

j77 | @j77 | Apr 5 12:30pm

In reply to @celia16 "Actually, I prefer the Walgreen’s brand PM Lubricant for eyes that’s about $9.00 per tube, but..." + (show)

I will have to check that out.It must be Good if it was out of stock for months.Thanks!

j77 | @j77 | Apr 5 12:33pm

In reply to @lkirnbauer "Yes, I used Cytomel in addition to my Synthroid. It took my weight down, but then..." + (show)

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.

jackielb | @jackielb | Apr 5 5:13pm

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.

j77 | @j77 | Apr 5 9:30pm

In reply to @jackielb "I had a lip biopsy this week and it came back negative (blood work was negative..." + (show)

Thankyou so much for responding!My dry eyes came on from either that iron Infusion or covid.I think it brought on more autoimmune or worsened my Hashimito's.Thankyou for all of the Grrat Suggestions!I am going to look them up now.The Xiidra just makes my eyes more dry and causes so much pain.

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