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.

@jebbss8

Is there a benefit of the biopsy? Or just keep treating symptoms?

Jump to this post

For me the benefit is knowing without a doubt that this is one thing going on. My symptoms aren't as severe as some; they change; and I have other things that impact my health. Without a diagnosis, I would never be sure and might even think it's all in my head. I have evidence that it's NOT all in my head and I don't have doctors saying, " maybe it's this or that or changing their mind because my symptoms changed or because "I look fine"!-- as so many of us with autoimmune disorders do.
That being said, there can be consequences from having a lip biopsy. When then cut the lip, they cut nerves. Sometimes they regenerate to varying degrees. The numbness in my lip lasted for years and I continue to have some numbness. It's tolerable and I don't notice it too much anymore. I say this not to deter you. I didn't know about this possible result ahead of time and it was quite a shock. Even so, I'm glad I have the result now, as I wade through teasing out other issues.

REPLY
@gema98

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.

Jump to this post

May I ask how long you have PBC and what treatment is in place. Mayo Clinic is out of state, but I would like to go see them. I live in NY. This diagnoses is awful, and I have to wait another month to see a Hepatologist. Also, the pain is in my L side.

REPLY
@terriishere1

May I ask how long you have PBC and what treatment is in place. Mayo Clinic is out of state, but I would like to go see them. I live in NY. This diagnoses is awful, and I have to wait another month to see a Hepatologist. Also, the pain is in my L side.

Jump to this post

I found out in 2021 at age 69 I was told for several years my liver enzymes were high and my Dr did not seem concerned. I had no symptoms and NAFLD was mentioned, I was planning our daughters wedding and husband was fighting cancer. Eventually I was sent to a GI who wanted a biopsy, as time and my husband passed I went for biopsy and was told PBC, Cirrhosis with Meld score 8. Then sent to a hepatologist evidentially I have had this for many years but asymptomatic. I was told hyperthyroidism 26 years ago but had no idea about liver disease. I was put on Ursodiol which has helped with my lab numbers, I have Ultrasound and bloodwork every 6 months when I see the hepatologist. I have some pain in my right back side especially when working in my yard, possibly from kidney. When DX I changed my diet when I asked what to do they said eat Mediterranean, NO
beef, pork, fried, white bread, sugar, salt. So I eat chicken breast, ground turkey breast, salmon, tuna, beans, veggies, fruit, whole grains. I’ve tweaked recipes to fit this diet so as not to get bored with my meals. Over three years of this part of my life I lost 85 lbs and didn’t even realize it, only good thing about my story is that my friends say I’m skinny and I’ve had to replace All of my clothes, thank goodness for hand me downs and resale stores. I hope I’ve answered some of our concerns PBC is not so bad when caught early and you treat your liver well. I am so thankful I never liked or drank alcohol 💚

REPLY
@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?

Jump to this post

Try an anti fungal ointment for the corners of your mouth. Nystatin for instance. Sjogrens invites yeast. Not enough necessarily to produce candida white patches. But try it. Healing and soothing is what you want.

REPLY
@mom2204

Try an anti fungal ointment for the corners of your mouth. Nystatin for instance. Sjogrens invites yeast. Not enough necessarily to produce candida white patches. But try it. Healing and soothing is what you want.

Jump to this post

Thank you!

REPLY

If you have Sjogren’s and neuropathy, you skin can itch.

REPLY
Please sign in or register to post a reply.