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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I have achy legs which is restless leg syndrome. A friend has sjorgens and itch due to PBC which I also have. I’ve been told if you have one autoimmune disease most likely have more. I’m curious if your liver enzymes are high, that’s what led to our liver diagnosis.

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Hi small fiber neuropathy (SFN) and dysautonomia due to Sjogren's Disease has me living in a state of extreme temperatures....either very hot or very cold....mostly very hot.

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@lilymol

Hi small fiber neuropathy (SFN) and dysautonomia due to Sjogren's Disease has me living in a state of extreme temperatures....either very hot or very cold....mostly very hot.

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Thank you so much the Dr can’t seem to figure the heat out. I will at least have something for them to check out. I thought I was going crazy with all the research and what the Dr.s have tried to help.

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@dunbun13

Thank you so much the Dr can’t seem to figure the heat out. I will at least have something for them to check out. I thought I was going crazy with all the research and what the Dr.s have tried to help.

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I also have the heat in my body and constantly worse body aches! Also extremely itchy skin. My hands are usually very cold for I have raynaurds’ also. But lately I’m feeling hot few times a day. Quite often taking my temperature. It’s actually a newer symptom for me. I’m having left side of body pain every night now in bed. Using heated rice Sox to try to help the discomfort.

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Thank you I have several of the same symptoms, are you taking any medication for the heat part and aches. I am recently suffering from skin dryness especially the corners of my lips! I have tried many lip conditioners, but no relief. Any one else on his site with Sjogrens and these issues?

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Hi there, I was diagnosed with Sjogrens about three years ago. I itch throughout the day. It is in certain areas only. Not after I go to bed. My back especially. Drives me crazy. There are so many other things, especially the glands in my neck.

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@dunbun13

Thank you I have several of the same symptoms, are you taking any medication for the heat part and aches. I am recently suffering from skin dryness especially the corners of my lips! I have tried many lip conditioners, but no relief. Any one else on his site with Sjogrens and these issues?

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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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@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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Have you considered that you might have a zinc deficiency?” Zinc. Zinc is an essential mineral that's vital to your health. In fact, a deficiency in zinc may impair skin health, digestion, immune function, reproductive health, and growth and development ( 6 ). It can also cause chapped lips, as well as dryness, irritation, and inflammation on the sides of your mouth”. If you do decide to take Zinc you also need to take copper.

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@burlingtongirl

Hi there, I was diagnosed with Sjogrens about three years ago. I itch throughout the day. It is in certain areas only. Not after I go to bed. My back especially. Drives me crazy. There are so many other things, especially the glands in my neck.

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I too suffer with the same thing. I thought it was just me. I’m not sure of the answer. My back has little bumps. I’ve never had body acne so I think it’s from my various autoimmune diseases that I have? Keep me posted if you find anything out about this. Good luck 🍀

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@cpd54

Have you considered that you might have a zinc deficiency?” Zinc. Zinc is an essential mineral that's vital to your health. In fact, a deficiency in zinc may impair skin health, digestion, immune function, reproductive health, and growth and development ( 6 ). It can also cause chapped lips, as well as dryness, irritation, and inflammation on the sides of your mouth”. If you do decide to take Zinc you also need to take copper.

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Wow ! I have all of this as well. I’m going to ask my doctor to check those levels on me. Thank you for this information

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