I saw my PCP today and we reviewed a lot of things. Then he started the exam and as he pressed around the tender points, sciatic areas, finger and knee joints, and SI joint, I was flinching more than usual from the pain. I've got three fingers on each hand that are beginning to twist sideways at the first joints, and all the middle joints are getting larger. And my SI joints have been bothering me worse than usual, along with new sciatic flares. He said it's likely all due to the Sjogrens. He said the Sjogrens can cause problems with so many organ systems and we will need to keep watch on everything closely. I thought it strange that my pulmonologist wants to do a repeat lung function test in July, a year after the last one. My eyes have been bothering me so badly for the past month that I was constantly rubbing them or adding eyedrops. My eye doc put me on Restasis and said I have Keratoconjunctivitis with the Sjogrens.
He's sending me for a barium swallow due to my GI tract symptoms & getting sluggish again. It feels like my abdomen is bloated and in general not moving. I can bend over and regurgitate acidic fluid. He's checking for a hernia too, due to pain with bending over and sitting up sometimes. I've also got to have an EMG on my hands and feet, and scapulae. The GI-Pelvic Floor Therapist said if the last round of pelvic floor treatment (3rd trmt) doesn't last then I may need a Neurostimulator implanted at the nerves that control the bowel & bladder. Oh joy. Not! He said, unfortunately the Sjogrens may be affecting my whole GI tract and bladder, as well as my joints.
Don't you just love it when at first you get the diagnosis thrown at you, like it's not anything to be worried about ("primarily dry eyes & mouth"). Then months down the road (like me), or years, as you start having more weird symptoms they start telling you about the "complications" of your diagnosis? Why not prepare us ahead of time? I guess it's a good thing we live in a world with education at our fingertips. Otherwise we wouldn't know much of anything.
I hadn't researched Sjogrens too much because they didn't tell me I needed to be watched carefully for complications. I literally just found out about Sjogrens complications, and now I'm trying to educate myself so I know what to expect. For instance, I found out that Sjogrens can cause neuropathies that include pain, tingling, & burning all over the body, like I have in my lower legs and fingers. It can also cause neurovascular damage that could explain many of my cognitive symptoms & changes. I don't know whether to blame the Sjogrens for the vascular changes in my brain since 2012, or the fibromyalgia, or both.
For Christmas & New Year's wishes, Id just really like to not get any more complications for the next year, or at least 3-6 months. Oh wait, my psychologist would tell me that is an unrealistic expectation of life, especially having all these chronic conditions I have. Well, I can dream can't I? Just don't pinch me and wake me up too soon, please! 🙂🙏🌼