1. < Autoimmune Diseases

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?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

shiprock | @shiprock | Mar 18, 2023
In reply to @dancing1 "I also have so many lip problems that so far no medicine or suggestions from doctors..." + (show)
@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.

Jump to this post

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.

REPLY
1 reply
dancing1 | @dancing1 | Mar 18, 2023
In reply to @shiprock "Shortly after I was diagnosed with Sjogren's I developed an allergy to SLS - sodium lauryl..." + (show)
@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.

Jump to this post

Thank you so much. I will !

REPLY
dunbun13 | @dunbun13 | Mar 18, 2023

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

REPLY
mims14 | @mims14 | Mar 19, 2023

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.

REPLY
1 reply
lilymol | @lilymol | Mar 19, 2023
In reply to @mims14 "I too have Sjogren's and have been experiencing "heat flashes". It comes on suddenly with sweating..." + (show)
@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.

Jump to this post

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

REPLY
2 replies
factorvautoimmunegirl | @factorvautoimmunegirl | Mar 20, 2023
In reply to @dancing1 "I also have so many lip problems that so far no medicine or suggestions from doctors..." + (show)
@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.

Jump to this post

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

REPLY
1 reply
dancing1 | @dancing1 | Mar 20, 2023
In reply to @factorvautoimmunegirl "I blend aloe Vera in my protein shakes. For my skin, especially due to the cold..." + (show)
@factorvautoimmunegirl

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

Jump to this post

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!

REPLY
1 reply
dunbun13 | @dunbun13 | Mar 20, 2023

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!

REPLY
factorvautoimmunegirl | @factorvautoimmunegirl | Mar 20, 2023
In reply to @dancing1 "Thank you. My nutritionist just started me on organic MCT Oil. I will ask her about..." + (show)
@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!

Jump to this post

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

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 20, 2023
In reply to @lilymol "This site has information on dysautonomia. https://www.sjogrensadvocate.com/" + (show)
@lilymol

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

Jump to this post

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

REPLY
View MoreView Less
Please sign in or register to post a reply.