Let’s say hello to one of our newest members- Nicci from Australia

@Nicci

Hi there, Nicci

Welcome to Sjogren’s Syndrome Support.

I am sorry to hear that you in the midst of searching for answers. This can be an exhausting and frustrating process, but I am glad that you are in pursuit of a diagnosis and treatment! The fact that you want to be happy and love your life means that you WILL! I am cheering you on and believe that you will conquer your symptoms.

How are you managing on the site so far?

I always encourage new members to create their own discussions by clicking the + New Topic tab. This is a great way to share your story, ask new questions, and request advice.

Hope to hear from you soon,

Danielle

Hi there

Thanks for your kind message :slight_smile: I am still on route to diagnosis. My GP and my Opthamologist think I have Sjogerns and so do I, but I don’t see the rheumatologist until the 21st June. I am having some frightening symptoms with this flare, in the past I have had the dry eyes and mouth and skin, which i have again this time, but now I also have severe pain in my leg bones and severe gastric problems. I suspect gastroparesis but my gastric emptying study showed slightly rapid as opposed to delayed stomach emptying. I have found some relief from seeing an Osteopath for treatment on the vagus nerve. I am scared. This illness is really impacting my life and my wellbeing and my ability to work and take care of my home and garden. It makes me sad.

1 Like

Hello Nicci,

You are most welcome!

Any change in health can cause us to become horribly anxious and unsettled. I am glad you are seeing a rheumatologist on June 21st… that is only a few short weeks away now (but can seem like a lifetime when you are uncomfortable and worried). I definitely think it would be worthwhile to mention your bone discomfort and gastric issues during your appointment. Patients with Sjogren’s can experience irritable bowel syndrome, abdominal discomfort, delayed gastric emptying, and more.

I also hope you stress that these symptoms are tarnishing your quality of life and happiness. A good rheumatologist will listen, reflect on what you have said, and help you find answers.

Would you consider creating a new discussion post? (Click + New Topic tab). I am certain that members of the community will be willing to offer you support and advice. You are not alone!

Danielle

Hi Nicci. Can you update on your situation, particularly the bone pain? I too have had bone pain, not on a regular basis but every so often and it’s horrible. I also have B-12 deficiency so the light-headedness could come with that. Have you tested for this? What about your iron level?

Hi there.

I still have no diagnosis. I still have all the symptoms of sjogerns. The rheumy has suggested possibly sjogerns, possibly fibromyalgia. I have some days where i feel ok, others where i struggle to get out of bed. Bone pain comes and goes.

I get bone pain too, but only when I am really flared up. It seems so weird to try and describe to other people who haven’t had to deal with it.