Hard to be hopeful..
Posted , 6 users are following.
im too new to all this. It came out of nowhere. First sinus, then dry eyes then what seems like horrid tmj with wackey ear issues. All since decemeber. I was guided to see thenRA and he said i had sicca syndrome and raynaruds and some other glitches. Nothing positive in many of the tests. Just a very few didnt come back good. And noted you manage symptoms. But i am 50 already have other stuff. I have optic nerve pallor from some virus and gerd and tmj. Anyway i never heard of this before and too late now but i am also a 30 year cig smoker on and off and about half a pack. I keep quiting but failing at it. I have quite a few times i seem to have a way harder time as im so uncomfortable with the weird stuff i have now. It makes it wrse. I feel its a lose lose now.Im in america everything in the world is blamed in smoking. Everything. It is despised here more so then anything. That started about a decade back. So if yiu ever smoked at all no oity and whatever happens to you is from that. Theres also no comoassion for any yoe of anxiety disorders so its just an interesting place to reside. This does trigger anxiety. Well my weird symptoms with my ears and spasms and tinnitus of various sorts do. I dont know which forum to even out this in. Im just waiting to die as i cant see a way through all this anymore. That sounds awful but i already messed uo my life from ever smoking. I didnt know. The world smoked and lived normal lives and such. It was so different, i dont even think sjogrens existed either. I never knew all this could happen and i never thought about it, no one did. So i feel defeated. We werent raised or brainwashed on what to fear the way world is now. Anyway, How do i live with this? Does it wax and wane? IS everyone else so string but me? Does this cause weird ear issues and bad tmd...i dont know whats ehat anymore. Need some advice and guidance. Please dont judge me that i smoked i have nowhere else to turn to figure this all out.
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1 like, 20 replies
morelia100 lisalisa67
Posted
I was diagnosed about four years ago with Sjogrens, also RA, Raynauds, GERD. I was a bit overwhelmed and depressed in the beginning, but then I can across information that I could heal myself naturally with no side effects, just by altering my lifestyle. I'm happy to report, that although it has been some work, and I'm definitely not perfect at doing the things I should all the time, I feel nigh better now. No more RA pain, reduced dry eye and dry mouth, acid reflux is gone, energy restored. This information is available if you look for it on the internet. So basically, there is hope. I don't like to say too much here because sometimes my messages are deleted if I get too specific. Even if you continue to smoke, there are other areas of your life you can control which might help you, such as exercise, diet, stress, other toxins in your environment. Triggers for autoimmune assumptions can include things like allergies, injuries, infections, hormones to name some. Hope this might help you. Best of luck. Most of us who have autoimmune diseases also are often predisposed to it through or genes, which just means we should be extra cautious. Hang in there
lily65668 morelia100
Posted
I agree with all of this, Morelia. I'm sure you're right about the genetic thing. I don't think anyone else in my family actually had SS, but nearly all of them on my mother's side seemed to have RA and/or allergies and asthma.
I've largely managed my own symptoms too, though not by following any strict diet, as I know you do. I've just addressed each of my symptoms, tried to identify any triggers for them, and then avoided those triggers. For example, I realised years ago that lying flat at night, eating bread, eating certain fatty foods late in the evening, getting constipated, and wearing too-tight pants(!) were all triggers for GERD. In the 35 years or so I've been addressing those issues, I've only suffered the pain of acid reflux half a dozen times a year. When I do get it, a one-off dose of domperidone soon has it on the run. Much better than spending a lifetime on omeprazole, with all its complications, unless you really have to.
I'm also careful about what I eat, though I exclude very little (except bread, junk food and sugary drinks). I even drink wine on a regular basis, though I've learned to identify the types that cause acid reflux.
I find flare-ups of joint pain can be helped with homeopathy, and cold compresses are a good solution for tendinitis. Both can also be helped by judicious exercise - i.e. going for it when I'm pain-free, but neither overdoing it or giving up exercise altogether when I'm in pain.
Obviously, medical intervention is sometimes necessary. It's hard to manage an underactive thyroid without taking thyroxine, and I do now agree to a low maintenance dose of the steroid inhaler, in response to my falling lung capacity (which is now back to normal as a result). And some people draw the short straw, and need more aggressive medication. However, a lot can be done by taking responsibility for management of our own symptoms, even if we do need some medical help. I find this also produces the positive, can-do attitude that always helps in autoimmune conditions.