sarahloudobby Posted December 26, 2022 Report Share Posted December 26, 2022 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. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted December 27, 2022 Report Share Posted December 27, 2022 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. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted December 29, 2022 Report Share Posted December 29, 2022 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. https://vimeo.com/359097230 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. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted June 15, 2023 Report Share Posted June 15, 2023 @sarahloudobby, may we ask how your testing went? I’m finally getting tested for Sjogren’s (based on family history) so remembered your post. I hope you have been able to get some help with your POTS symptoms too. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.