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Can someone help?


#1

I have NO idea what is happening to me!!!! I *THINK* I might be going in and out of flares. But I am not sure. I got dx is April 2016 via lip bx presented with chronic dry mouth. Was completely sero-negative. Only had a slightly elevated RF.

I am on my 4th try at taking plaquenil (200 mgs twice daily) been on it this go round since July 18th. Had rashes on previous attempt while on plaquenil. Rash appeared while on plaquenil this time also but that is not what I am concerned about.

I have been experiencing EXTREME fatigue......so bad that Sunday I woke up at 7 AM and by Noon I had already taken TWO NAPS!!!! This has become quite the norm for me lately! And the fatigue seems to get worse as the day wears on. I have to literally force myself to shower in the evenings so I have just started showering whenever I feel like it. Whether it be noon or 11 in the morning. I am in pain CONSTANTLY!!! I seems to go about 2 days where I feel pretty good and then WHAMO-O!!! I feel like a zombie!! I hurt so bad and I am exhausted ALL THE TIME!!!

Those two days when I feel good I think that MAYBE the plaquenil is kicking in then I am back to being a zombie again and I am let down. This SS/autoimmune journey is new to me and I am still trying to figure things out.

I hope this makes some kind of sense! I feel like I weigh 1,000 pounds right now. I feel so weighed down like if one more thing happens I will explode!!! I have so much going on.........I just don't know if I can do this.........

I just don't know........


#2

Hang in there, knowing your not alone helps, my symptoms are not exactly the same but similar…in some ways. The first few months are pretty rough and I can understand you feel pretty hopeless… It gets better as you learn diff coping skills… for me seems like there’s a new monster around every corner, once I figure out how to deal with it something else pops up. I’m sorry your feeling like this but I think it will get better…


#3

Thanks for your reply........it has to get better because the way I have been feeling, I don't want to EVEN think about it being worse!! I feel like the BIGGEST hypochondriac ever!!! My next Rheumy appt is 9/12 and seems like everyday I add something new to my already long list to talk to him about.

I know this autoimmune journey is a long, confusing & complicated one but I honestly thought that SS would be a piece of cake. Boy was I wrong!!! This is so much more that I ever dreamed!!!!

Thanks again!!

Lisa


#4

How many days does the your fatigue last. Here lately I feel dizzy, almost buzzed and so tired… ! my perception is altered.I was also sero neg until I took the early sjo test. I stopped taking plaquinil cuz one of side effect is dizzyness… Now I’m wondering if I’m going to regret it. I’ve only been off of it for a few days now, but I also know it has a ridiculously long half life of about 40 days… Not sure …way to do either…


#5

Weird thing is I never really had the extreme fatigue like some others were talking about… Now I know… It’s feels like someone shot me with a tranquilizer.


#6

I had that for a very long time. It took a little while with the rheumy to balance meds and some supplements but that kind of thing is way better now. It used to scare me, how bad it was. I have to admit I chuckled a little at your line about taking a shower whenever you could…. I was there. Thankfully, I have been stabilized long enough I'd forgotten about it.

That's not to say I don't still get flairs but they aren't as vicious. Well, very rarely now. I hope your doc is one who really listens and you can start working on your path back. Please keep us posted on how you are doing. 12 days sounds like an eternity but it'll get here.


#7

Thanks so much for the replies! I am REALLY trying to be patient but it is getting very difficult. It's just so hard to keep going when you can't see the light at the end of the tunnel. I have Bipolar Disorder, OCD, PTSD & anxiety as well and I worry about my mental state as well as my physical state. This constant pain & fatigue is very depressing.

And it seems like everyday something new pops up. I feel like the BIGGEST hypochondriac EVER!!! I know I need to just come to terms with this.......after all, this is NOT something that can be cured. This is for the rest of my life. So I guess I better start dealing with it......huh?

Thanks again y'all!

Lisa


#8

You are dealing with so much all at once…it must be tough with a disease that can add to that anxiety. It may sound odd but you do get used to it. Once you get used to kind of scanning to see how you are doing during the day, things settle into something of a manageable pattern. We all suggest this often….try keeping a symptoms diary for a little while. it can help you catch things that may trigger a flair, such as certain foods, activities, lack of sleep, weather changes, etc. It also helps you to make sure to cover everything with your doc so he gets a fuller picture of what's going on. it may help get you on a path a little easier.