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Sjogrens Complications

Dec 15, 2015 10:25 PM

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! πŸ™‚πŸ™πŸŒΌ

Dec 15, 2015 10:29 PM

Sending lots of prayers and gentle hugs. I hope you get your Christmas wish, plus a few miracles as well! ❀

Dec 16, 2015 12:34 AM

How awful. I doctors don't tell people so they don't panic or have placebo effects but I really do prefer to be prepared. I feel for you, big hug.

Dec 16, 2015 1:17 AM

I know how hard it is and feel your pain, I think doctors don't everything even if you have a diagnosis. That's why they call it practicing medicine. I almost got a diagnosis yesterday, more test, I don't know what's worse getting a diagnosis or the old I don't know, why you have pain. I pray for your wish to come true and why we're at it to heal you completely love and light moshell

Dec 16, 2015 6:22 AM

Oh Flappsy I am so sorry that this is happening to you. I wish every Dr that our family see's could walk in our shoes for a month and then maybe they would be more compassionate and understanding. Tell us every thing we need to know instead of well you have so and so and that's it. I feel like it's better to know what we may be facing even if it is down the road a ways than just be in the dark like most of us are. I hope and pray that you get your Wishes this year. You know where two or more are gathered in his name all we have to do is ask and believe. In Jesus name we ask that you take away the pain and twisted fingers on Flappsy 's hands dear God we pray. THANK YOU JESUS.

Dec 16, 2015 6:29 AM

Having SjΓΆgren's is not an easy road. As for the GI symptoms, I am using a myriad of drugs to treat the symptoms, but I find using the FODMAP diet decreases the overall incidences such as acid reflux and burping. I still have terrible bloating, and use food frequently to release endorphins to quiet the pain if only for a short time. (Which is not a good solution) The combo of systems/organs that SjΓΆgren syndrome and fibromyalgia affect is staggering! Allow yourself to mourn the loss of independence. Allow yourself freedom to forgive yourself for getting sick in the first place...it's not your fault. But hopefully, it sounds like your doctors are addressing the issues. Make sure they document appropriately. Because disability has specific language that must be met in the medical records in order to receive benefits.

Dec 16, 2015 11:04 AM

Flappsy, I am so sorry about the complications that you're having with the Sjogrens. I have done much reading and research on it and I don't envy what you are having to deal with. My dentist is now sending me to an oral surgeon to have biopsies done on the horrendous sore I have in my mouth. I've had it for over a month and it has only gotten worse. I've had antibiotics, special prescription rinses, salt water rinses, diluted Listerine rinses, etc. it hurts like hell and the dentist feel with my dry mouth, the huge sore, my dry eyes and all the other autoimmune issues I have, that I quite probably have Sjogrens. I'm actually frightened to find out. Sometimes I wonder if I'm better off just not knowing but then knowing the damage it can cause, I guess that could only be a detriment to me. I hope and pray that they are able to get your complications under control and they are able to stave off any further damage. I'm sending you lots of love, gentle {{Hugs}} and daily prayers. Know I'm always with you (my twin separated at birth... LOL!!!) I always will be. I hope that today is a better day and that it is peaceful and that you have less pain. πŸ’•πŸ™πŸ»πŸŒ»

Dec 16, 2015 1:34 PM

I hate they way the doctor's label you or give u the diagnosis and its just a blanket statement. I agree that I feel I need all the information involved with whatnur telling g me. Some people would say it could scsre u or give u complex. But I'd be more scsredd if I start having a symptom that is involved with my condition and I'm not aware its normal. Thenid be freaked out. I'd like to know what to expect and then I can deal with it better.
As far as your news yesr. Christmas wish. I'd give u one. Better I'd give u that gift as a just because gift. And then for Christmas and new year's you would be able to go on a cruise and have the freedom to move freely without fesr of what pains you have to endure. And you'd be able to eat tik uu bust.... That is a great gift.hopefully one day you get it...
Tik then take care my pain buddy..

Dec 16, 2015 9:50 PM

Thank you everyone! I haven't been on much lately for various reasons with either myself or other family members medical issues. And I'm fighting depression worse this year than ever before at the holidays, with my dad and mother in law grading from us mentally. Knowing I can come here and voice my thoughts and feelings, and always find support makes fighting through my chronic issues easier for me. You all mean the world to me, unlike many who I thought were friends before I got sick. I wish I could hug each of you in person. I really thought I had it together, had come to grips with my "new normal", but I guess I don't even know what normal is anymore. So I'll settle for one day at a time as my" normal for that day " instead. (((Hugs))), thanks, and prayers for you all! πŸ™‚πŸ™πŸŒΌπŸ’žπŸ’•

Dec 16, 2015 10:35 PM

I'm thinking of you and praying for things to get better for you very soon.

Dec 17, 2015 12:18 PM

Flappsy, you hang in there my dear friend. I have thought many times how I'd love to be able to hug you and tell you how very much you mean to me. I have found so many supportive people here and the love and support is what really does pull me through many days. There are so many of you that I have formed very strong bonds with and for that I thank God and feel extremely blessed. I hope and pray that your depression eases. I can't imaging the anguish of knowing people you love are declining so rapidly. My heart goes out to you. Know that you can lean on me, Flappsy. I'll give you every spoon I have, you can hold both hands, cry on either shoulder. You've always been by my side from the time I arrived in this wonderful community and I will forever walk beside you!! Sending positive vibes, lots of love and prayers that God helps you through and that you find some peace in your heart and soul. Gentle {{Hugs}}πŸ’•πŸ™πŸ»πŸ˜

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