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Sjogrens Pain Sucks

Mar 31, 2017 7:54 PM

I'm new to this app and wanted to just put myself out there. I have Sjogrens and many of the other issues that go along with it. If anyone wants to post about treatments, symptoms or just how much it all sucks... Here is a place.

Mar 31, 2017 8:29 PM

Hi Awagsano. I hope the pain is manageable in some way 😊 pain does suck for sure .

Apr 01, 2017 9:46 AM

We do have a member here who has been dealing with Sjogrens for awhile. In fact that's her handle. Am sure she will be along soon and perhaps can share with you the things that have helped her.

Apr 01, 2017 10:18 AM

Hi AWagsano, welcome to the community.. we are more like Family here. I have had Sjogrens Syndrome for almost a year now... My Rheumatologist has me on Plaquinall.. I also take various suppliments like tumeric, milk thistle ( supposed to help keep a healthy liver) magnesium and B12 for the nervous system. Can't stay on B12 very long or your levels will get to high so take when taking these keep an eye on your levels. I also take vitamin C since our immune system is dammage from the disease. I also have nuerpathy problems from the Sjogrens Syndrome and have to take Gabapentin and it helps reduce the pain from it. Diet is a big factor in helping control pain... I'll have to post a link here for a diet that is specifically taylored to the disease and I have found it to be quite helpful. I also walk around my parks track equaling about a mile but I had to work up to it, so don't be frustrated if you can't do it, thier are some day's that I can only walk around the track once. Weekends are day's I take to rest because I'm always so busy during the weekdays, so find time to rest and relax..Take a nice hot bubble bath or just do a spa day lol.. Everyone needs a break even if we are in pain. I also went into a bigger Flair up today then what started on Wednesday night...So I'll be enjoying the heating pads today. I hope that this helps! Oh wait! I also been reading up on the disease I'll post a picture of the two books maybe you can find out more than I can understand..( brain fog gets me alot more than it used to)

Apr 02, 2017 9:06 AM

Thank you very much for your help. I appreciate all the information and you taking the time. I was going on 3 years this summer and have been getting the worst pain over the past 5-6 months. I haven't been to the Rheum. that diagnosed me because he is so far but I am going to have to go. I went to one nearby to try and get help but wasn't happy with her. I think I may also have Fibromyalgia based on where and how I'm getting the pain but she didn't want to examine me for it because "the meds to treat it interact with things I take" which seems ridiculous because I would still like to know if it is what I'm dealing with. I don't want a lot of meds anyway. So she did bloodwork that I haven't gotten results of yet and prescribed Plaquenil and Mobic. I can't even take Mobic because I have several severe GI issues that have progressively gotten worse since I was 12 (I'm 34). I have a lot of concerns about the Plaquenil so haven't started it. Have you had any of the side effects?

Apr 02, 2017 1:35 PM

After about a week of taking it I got nasty diaharea and nauseated but it went away after a week, I have not any issues after that, but keep regular appointments with your eye doctor. I've had 2 already and my eyes are actually in good shape still.

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