Hello Jo from Minnesota, welcome to the community!

[Danielle_BFintern]

@JoMarie

Hi there, Jo

My name is Danielle and I am a Ben’s Friends intern. I wanted to take a moment to welcome you to Sjogren’s Syndrome Support.

I am sorry you did not find us until so many years after your diagnosis, but we are happy to have you here now. I think it is great that you are wanting to research the syndrome further. There is all kinds of information in this community that you might find helpful- especially coping strategies and methods of reducing dryness. What treatment options are you relying on currently?

You might find it helpful to click the search icon (magnifying glass, top right). This is what I use to look through existing topics. We always encourage members to create their own discussion by clicking the + New Topic tab.

We are here if you have any questions or concerns.

Danielle

[JoMarie]

Hi Danielle,

Thank you for contacting me, I do appreciate it. I haven’t had a lot of time to devote in learning how to navigate the system so I haven’t been active on it yet. I really wanted to just “e-talk” to someone who knows what I’m talking about. I have many, many symptoms that may or may not be Sjogren’s and I am just now realizing the impact that this may have had on my body for years. The dryness part is increasing for me in the past year or two and I’m interested to know what people use that helps. Right now I use Biotene and eyedrops that help dry eyes, but the vaginal dryness and burning is the worst. The PA at my clinic suggested using Replens and I had fairly good results with that at first, but now…not so much. And there are some things, for example itching all over my body that never occurred to me might be connected.

I will get back on and try the search icon soon. Thank you for the tips.

Jo

[Danielle_BFintern]

Hi Jo,

Great to hear from you. You are definitely in the right place- there are many community members who I am certain would love to “e-talk” with you about Sjogren’s and its many frustrating symptoms.

I would not be the least bit surprised if there is a direct correlation between Sjogren’s and itching. One community member has made a facial cleanser/moisturizer using coconut oil & vitamin E oil. Take a look at these threads (and there are so many more like them):

Unbearable itching

I do have a quick question first. You said it is deep and painful. Does it feel like its coming from up under the skin rather than actually on the surface? I only ask because I have neuropathy caused by SS and that was how it felt in the beginning. I couldn't figure out what was happening at first. I used to swat at mosquitos that weren't there. LOL. It may be worth asking your rheumy about.

Itching

I've been to numerous doctors about why I itch till I bleed and no test so far has answered my problem. My primary Dr thinks its my sjogrens. The main areas are legs arms and back. Drives me crazy. Dr prescribed an antihistamine but it just puts me to sleep. Any suggestions?

Vaginal dryness and burning are complaints that I have stumbled across before. They seem to be quite common with Sjogren’s. Take a look at this thread:

Vaginal dryness and interstitial cystitis treatment?

I got a simple cream that is prescription from my gynecologist. She has a good understanding of Sjogren's thankfully. It has helped immensely as well. Thank goodness this is one of the easier parts to deal with. As always, I want to offer the quick reminder that you should always talk to your doc even with supplements. They can interact with the meds you may already be on or cause an unintended change in your system.

In any case, community members are speaking highly of coconut oil and vitamin E oil as methods of managing dryness, both vaginal and elsewhere.

I hope this helps.

Danielle