Question about Sjogrens and discomfort in legs. Also skin feels itchy

Posted by dunbun13 @dunbun13, Mar 14, 2023

I have Sjogrens and have not had too many problems until lately.
Achy legs, itching, and at times extreme heat, much like a hot flash,but I had a Hysterectomy 30 years ago. My Primary Dr. Said I should not be having hot flashes and I agree with her. I will be seeing my Rheumatologist next month, and hope she can shed some light on these recent events in my body. Wondering if any one of you have experienced these?

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@dancing1

I also have so many lip problems that so far no medicine or suggestions from doctors have been able to manage. The peeling happens daily. I have been treated for little white areas in the corners of my mouth. The dryness of my lips and peeling will not go away. Mayo doctor suggested I might be allergic to aquaphor so I stopped that she said to use medical Vaseline instead after a cream with steroid didn’t help. Another dermatologist gave me a prescription for a tube of extremely expensive (hundreds) that I did not try). Also had steroids in it and I had trouble with any medication with steroids. Now just using the medical pure Vaseline at least 6 or more times a day and still not going away.

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Shortly after I was diagnosed with Sjogren's I developed an allergy to SLS - sodium lauryl sulfate - an ingredient in most toothpastes. It looks like an extreme version of Sjogren's dry mouth. Once I started using toothpaste without SLS my Sjogren's mouth symptoms became much more manageable. Sensodyne's Fresh Mint doesn't have it and I think Tom's is SLS free.
You might try changing your toothpaste. My dentist is the person who suggested this remedy. Hope this helps.

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@shiprock

Shortly after I was diagnosed with Sjogren's I developed an allergy to SLS - sodium lauryl sulfate - an ingredient in most toothpastes. It looks like an extreme version of Sjogren's dry mouth. Once I started using toothpaste without SLS my Sjogren's mouth symptoms became much more manageable. Sensodyne's Fresh Mint doesn't have it and I think Tom's is SLS free.
You might try changing your toothpaste. My dentist is the person who suggested this remedy. Hope this helps.

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Thank you so much. I will !

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All this information is so helpful!
Thank you for all your help!

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I too have Sjogren's and have been experiencing "heat flashes". It comes on suddenly with sweating all over, slight nausea, and slight panicky feeling. I'm 67 and have had a hysterectomy. It only lasts few minutes then I can feel really cold. My PCP said I shouldn't be having hot flashes. My Tsh is normal. She also took me off Cymbalta and switched me to prestiq. I haven't been able to find much research on dysautonomia with sjogren's in the literature. If anyone has seen this in the literature I would love to read more and take it to my rheumatologist.

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@mims14

I too have Sjogren's and have been experiencing "heat flashes". It comes on suddenly with sweating all over, slight nausea, and slight panicky feeling. I'm 67 and have had a hysterectomy. It only lasts few minutes then I can feel really cold. My PCP said I shouldn't be having hot flashes. My Tsh is normal. She also took me off Cymbalta and switched me to prestiq. I haven't been able to find much research on dysautonomia with sjogren's in the literature. If anyone has seen this in the literature I would love to read more and take it to my rheumatologist.

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This site has information on dysautonomia.
https://www.sjogrensadvocate.com/

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@dancing1

I also have so many lip problems that so far no medicine or suggestions from doctors have been able to manage. The peeling happens daily. I have been treated for little white areas in the corners of my mouth. The dryness of my lips and peeling will not go away. Mayo doctor suggested I might be allergic to aquaphor so I stopped that she said to use medical Vaseline instead after a cream with steroid didn’t help. Another dermatologist gave me a prescription for a tube of extremely expensive (hundreds) that I did not try). Also had steroids in it and I had trouble with any medication with steroids. Now just using the medical pure Vaseline at least 6 or more times a day and still not going away.

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I blend aloe Vera in my protein shakes. For my skin, especially due to the cold season.

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@factorvautoimmunegirl

I blend aloe Vera in my protein shakes. For my skin, especially due to the cold season.

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Thank you. My nutritionist just started me on organic MCT Oil. I will ask her about the Aloe Vera. Thank you. I awoke to terrible hard hanging skin on lower lip. Even after many many times of medical Vaseline last night. It’s awful. Appreciate your help!

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How does the MCT oil help you ? I have heard about it recently. I also struggle with Colitis, so I struggle with many medications. I wish I could find a prescription one that would help with my Sjogren symptoms!

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@dancing1

Thank you. My nutritionist just started me on organic MCT Oil. I will ask her about the Aloe Vera. Thank you. I awoke to terrible hard hanging skin on lower lip. Even after many many times of medical Vaseline last night. It’s awful. Appreciate your help!

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You can find aloe Vera in the frozen food section of Walmart, that’s where I got mine… drink it!

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@lilymol

This site has information on dysautonomia.
https://www.sjogrensadvocate.com/

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@lilymol I checked out the sjogrens advocate like you suggested. Excellent resource!

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