Jump to content

Sjogrens Syndrome


Recommended Posts

Hello everyone. I have just requested to be tested for Sjögren’s syndrome alongside my symptoms of POTS and possible lupus. I have always struggled with auto immune disease since 2002 when I came down with a virus and never fully recovered. I have had good and bad patches but since having covid twice in the space of fifteen months my symptoms have become awful. Does anyone else have any experience like this? I now have intermittent Dypsnea, worse heart palpitations and dizzy spells where the black  comes in from the outside of my eyes and I almost pass out entirely. I have very dry eyes and nose and need so much sleep. I am managing to work as I work part time due to having two children who I co-parent with me ex. I love my life I just wish I could feel a bit better and not so tired. 

Link to comment
Share on other sites

Yup. Being treated for Sjogren's because I have nearly every symptom, but still struggle with some doctors who don't understand that a large portion of SS sufferers don't show up in bloodwork. 

I also believe that the autoimmune component is causing nerve damage and making exercise more difficult, I know the extreme dryness (eyes, throat, chest) certainly make any physical activity more of a challenge. 

Link to comment
Share on other sites

Lauren Stiles, who started Dysautonomia International, has Sjogren's syndrome plus POTS. I remember watching a video lecture in which she spoke about her experiences, but can't remember which one it was. Maybe someone else can help.

I think it was on the Dysautonomia International Vimeo channel.

I did find this lecture, but it's with Dr Brent Goodman, not the one I'm thinking of.


I'm thinking of asking to be tested for Sjogren's (SS-A, SS-B if I have it right) because I suspect my mother had it. I don't have the classic SS symptoms yet, just dysautonomia, plus ulcerative colitis.

I am sorry to hear you are having a bad time with your symptoms lately. I have been getting worse gradually for about 18 years now, but this last year I have felt like I am "losing condition" fast. It's a real worry.

Link to comment
Share on other sites

  • 5 months later...

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...