SJOGREN'S SYNDROME

[SallyMac]

I live in Greenock, Scotland , I have Sjogren's Syndrome but don't get any help from my GP or anyone else, I'd like to know where I can look for some help

[Hidden]

Hi Sally

They thought I had Sjogren’s but I have Lymphangioleiomyomatosis or LAM.

I suppose you know the NHS website

nhs.uk/conditions/sjogrens-...

There is a British Association I would get in contact with them:

bssa.uk.net

Wishing you well x

Fran

[Caspiana]

Hello SallyMac . I also have Sjogren's, RA and lung disease. I am not in any groups for Sjogren's but I know that the support site called Daily strength has one. Fran has also added one from the NHS. 👍

Here's the link dailystrength.org/group/sjo...

I hope you are doing okay today. I know it's tough to feel like you have no support.

Sending you best wishes.

Cas xx

[barbs47]

Hi I suffer with this too. I tried several things from the doctor but non of them seemed to help very much. I was finding nighttime’s the worst I got very little sleep as my dry mouth would wake me. I then found Xylimelts. They are a kind of lozenger that sticks inside your mouth. They stimulate saliva, moisturises and lubricates the mouth. I have shown them to my doctor she is happy for me to use them but unfortunately they are not available on the NHS so I buy them on line from mouthulcer.co.uk. I use one each nite and can now sleep for 6 to 7 hours at night without my dry mouth waking me. I hope this helps Barbs x