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← Return to sero negative sjogrens?
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Sjogrens is very hard to diagnose I have had it for the past 4years and it is getting worse. One of the problems is GPs do not recognize this disease at 70 oh it’s just old age well it is not when you wake up 4times a night put drops in swallow water which tells your brain you are awake you need to go and urinate not to mention arthritis in your hands and feet
And to put the cherry on top I have sleep apnea . So we have to be our own expert . I have tried nervous Rx eye drops no success. We have to be careful the cornea can get warm Down
So here’s my new regime point at night for the eyes elevated pillow sleep on my side(breathing) only a small sip of water (fool the brain)
Every day is a challenge by morning I can hardly wait to get up. Oh yes and throbbing headaches in the am caused by low oxygen producing more cO2 to the brain. I know I’m venting but when you tell your health professional they don’t understand how sleep deprived we are. Any ideas out there I would love to hear them
Replies to "Sjogrens is very hard to diagnose I have had it for the past 4years and it..."
@lynda12345 I live 8 hours away from specialists 🙁
Unfortunately
So I’m on my own
There are hospitals in Canada in Vancouver and
Toronto
Can I ask you what medication you use for your Sjogrens?
@lynda12345 I’ve recently been given Rx for dry eye which are prohibitively expensive so do not fill.
I ordered an OTC Miebo-like tear, Evotears, from the UK. At the suggestion of one of these posts I’ve just gotten OTC iVizia. It’s in individual vials. I keep it in the fridge. It has the viscosity of a liquid gel and feels glorious going on.
@lynda12345 I have had Sjögren’s ‘s so intense that I had to have two eye surgeries to remove thick growths due to severely dry eyes. I have had hand and finger pain just like RA. I took 3000 mg of Tylenol just to get by. I finally discovered flaxseed oil capsules-I get them at Costco-1200 mg. I take 2 per day. Now my inflammation is totally gone and I take no Tylenol! I am in remission but still need to use systane eye drops and eat slowly due to dryness. I also removed a gold bridge that had mercury underneath (amalgsm). 5 months later -still taking the flaxseed oil capsules, I awoke without pain!!!!
@lynda12345
I'm sorry you go through all this. Myself I have gone through for yrs and know I have sjögren.
I've been recently diagnosed with sarcoidosis with a ct scan, pet scan then a biopsy of several enlarged lymph nodes I've had for a few years. But with this I know see a bunch of doctors because it can effect different organs with granulomas and also cause different autoimmune diseases and because I've had symptoms of sjögren's syndrome for yrs they just did a lot of bloodwork for it. She did say that because I had some come back negative before we will probably have to do the lip biopsy.
Now about you talking about drinking a sip of water before bed. I read that about people and how they wake up with headaches become constipated. That time for me is where I'm more thirsty, my mouth is more dry and I drink more water. I do buy this small tube of stuff from the store its blue and its only the size of your finger and its thick. You put a small amount in each eye before bed and you wake up where your eyes feels great, not itchy. For your skin I put a nice body oil on after shower while your skin lightly wet wait a couple minutes then add thick lotion on top of the oil. It helps big time. I hope this helps. Have a great day
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@lynda12345
Are you able to see a rheumatologist? That is who I get my medication from.