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

Can you share with me, what is Sjogrens advocate?

Will do, you too.

Thank you.

I never connected my dryness with the lower leg pain I have. Will read more. What I have been doing, so that I can sleep without the "buzz" or pain, is to do a few stretches before bed. I think it activates circulation. To me, it feels like a matter of circulation and maybe some tightness of muscles/tendons. My EMG (nerve conduction) tests are normal, even for the muscles that are involved. I usually do 18 of each move. I do these on my bed; cat/cow/child/cobra yoga, piriformis stretches (see Dr Jo), shuffle my feet while on my back and then bend knees and do a windshield wiper movement, back and forth. Lifting legs, I rotate ankles until tightnes is gone. Gentle massage from toes to torso (edema massage). On my stomach, I bend legs "to butt" . One leg at a time, then do windshield wiper move. On back, elevate legs and do pumping (heal to toe) movement. A daily walk is also good. I get a shot in my left outer tendon area of my knee about every six months. For dryness, I take quick showers, not too hot, moisturize after--no fragrance. For mouth, electric toothbrush or water pik and Oral B Dry Mouth wash with xylitol. For hot flashes (!!) I have cool packs for the back of my neck in the freezer, which allows me to get back to sleep. Not quite hot flash as can't feel them coming, but can be from a small movement, like turning over. I could be better about hydration; some have found the spray magnesium useful. Hope this helps. I am only on Plaquenil these days.

Oh, I was diagnosed with Sjögren’s four years ago and I came down with a horrible Mac lung infection
That I got from my dirty showerhead. It was filled with bacteria. I’ll be very careful that you disinfect your showerhead at least once a month and I just use straight vinegar. Because of my five years of this long and affection I’m now on IVIG plasma therapy to get my immune system working better. One of my symptoms of Sjogren’s is also a lot of crazy nerve pain in my legs which they’re calling neuropathy. My remedy for that is to take one or two Tylenol at night for the nerve pain. I also get the hives. . Take good care of yourself.!!

@dunbun13 Sorry, I’m late, but here is a link to Sjogrens Advocate. It is a newsletter for patients, family members and caregivers of those with Sjogren’s Syndrome. I took a look at it and it had lots of useful info.
https://www.sjogrensadvocate.com/
I understand that you’re seeing a rheumatologist next month. I certainly hope she can help you! Will you let us know what she says about the itching, achy legs and hot flashes?

Thank you so much! A lot of great information. Yes I certainly will let you know what I find out after my appointment.

I’ve tried many things for the dry lips especially problems in corners but nothing has helped. Skin extremely dry all over red spots everywhere under skin. Extremely dry skin. Lips will clear for a day or morning and then dry peeling comes right back. Ow dermatologist is saying apply medical Vaseline 8 to 9 times daily. I’m working with a wonderful nutritionist just started adding MCT oil to drinks now twice a day to see if that helps. Otherwise use CeraVe products. Just trying now Routine shampoo and conditioner. Have had terrible drying hair loss and itching. Nothing has worked so far but I’m trying these new products.

What does the MCT help?
I love to get all the helpful information I can get! Thank you so much!

I just started taking it. The nutritionist thinks it will. So I am using it. I should find out in a couple of weeks.