Anyone Else Experiencing this?
Posted , 6 users are following.
Hi All,
I was diagnosed with Sjogrens about 3 years ago after having such severe dry eye that I had chronic cornial erosion syndrome. I saw many specialists at a top hospital in the US and had bloodwork to confirm. It was my only symptom at the time. I am on Restasis daily. This is still an issue for me but manageable. I have had new symptoms lately that I don't know if they are related. I started getting massive headaches and nausea had an MRI done on my head with nothing of consequence noted. After about a month the headaches went away and then I starting getting chest pains, I had tests done and nothing was wrong with my heart, now I have pain on my right side, my right hip feels like it is burning and also my lower back. I feel like I am going crazy!! Test after test with no answers. I just had bloodwork done again and no RA. I also have IBS and GERD...sometimes my skin feels uncomfortable and I don't want anyone to touch me...so many odd things. I was just wondering if anyone else is experiencing these symptoms with Sjogrens.
0 likes, 4 replies
Tumtum1963 shanna26871
Posted
It sounds to me like you are experiencing the neurological aspect of Sjögren’s. This is the main aspect for me and by far the worst - although I respect the awful time you’ve had with your eyes of course. As SS is a systemic autoimmune disease the problems may start with dry eyes and mouth but can progress to attack our peripheral nervous systems.
With my own eye dryness I use gels overnight. I’m not allergic to lanolin so am lucky that I don’t react badly to any active ingredient in it. I used to use lacrilube but was switched recently to one called VItA Pos and it’s much the same as Lacrilube for me. My eyes are so dry that they lap up the viscosity and I can even use it during the day without my vision being affected. I believe this and very frequent use of drops and punctal plugs are the reason I don’t have abrasions. The neuropathy has affected the tissue around my eyes too so I use these topical meds because loss of sensation means I wouldn’t know if my eyes were getting dry now as I no longer have the gritty sensation to warn me.
There’s nothing my doctors can do to slow down the effect of the small fibre and autonomic neuropathies though.
shanna26871 Tumtum1963
Posted
shaq26875 Tumtum1963
Posted
this explains the reason why for a few days my vision in 1 eye got curtained in different areas at a time (like moving blurriness ) without any other symptoms and if I rubbed the eye my vision got restored . Last night I looked in a magnifying mirror and discovered I had a small piece of cotton wool in my eye (from taking off my mascara). So every time I had a curtain over part of my vision I rubbed it and the cotton moved restoring my vision but there was no pain or irritation in that eye. If I hadn't looked in the magnifying mirror I probably wouldn't have realized about the cotton wool in my eye.
I have punctal plugs and use Refresh Plus drops 2x daily ( opthamologist suggested 4x daily but not convenient while at work)
mandy95 shanna26871
Posted
I have Sjorgrens and have all the symptoms that you discussed. I also have Fibromyalgia which I was told by my RA that most patients with Sjogrens have. I also had my heart checked out because of the chest pains and it was clear.
Regards,
Mandy