I have been dealing with Sjogren’s for years but was just recently diagnosed with it in August of 2017,I have been having serious issues with a lack of words. I start a sentence and then whatever I was thinking about or going to say just goes right out of my mind and then I start to stutter almost. It’s like my brain locks up and just will not let me form coherent sentences and I am usually very well spoken. Is this a random thing that is just me or do other people have this issue? Also I have a hard time sleeping and I have to go to the restroom like 6 times before I can fall asleep. If I have even an inkling of needing to go to the restroom my body will not let me sleep until I go. What is going on?
Brain fog. Yes, I’ve had this to varying degrees. When it’s bad it can be really bad, where I can’t find words, lose track mid sentence, etc. It usually goes along with worse fatigue but not necessarily.
Are you treating the Sjogren’s systemically?
Yes, they have me on 4 different meds of varying dosages and names, two are an immunosuppressant, one is a corticosteriod, and the other is to help combat the drawbacks of one of the immunosuppressant. I just get so lost in my own words that sometimes I feel like I’m never going to arrive at the end of my thought process and get all of the words out that I need to. I deal with the public quite a lot and I fear that may become a problem since my job requires me to speak to people and be friendly. I try not to stutter or act bothered by it but I am seriously unnerved by my new lack of speaking ability.
I wonder if you will find it to be temporary. I certainly hope so!
Thanks, I don’t think it’s gotten any better and now I’m having severe and terrible mood swings as well.
I, too, suffer from brain fog. I work full time and I will be in the middle of a task I have done hundreds of times and suddenly forget how to do it. It really scares me. I am seeing my neurologist tomorrow about it.
Let me know what they say, if there is anyway to keep that from happening or if they prescribe something to help.
Hi Leeanngiles! He prescribed Modafinil 200 mg daily to help with the brain fog and the fatique. The first day I felt like I had drank about 20 Red bulls, lol, but I have gotten used to it now and it is really helping. It helps a lot with the fatique, but also makes me feel clearer.I really researched it before I started it to make sure it wasn’t like Adderal or Ritalin and it is different. So far so good. I know it is not treating anything just masking symptoms but it helps me function better at work
That’s great news, that you’ve seen an improvement in how you’re functioning.
Mood swings!! I think I’m possessed. Horrible thoughts invade my mind followed by a nasty attitude. I spend half of my day fighting these unreasonable emotions.
It’s two years since my last major depression which lasted three years. This is definitely not fun. Nor is being lost for words and not being able to pronounce some of them. I blamed that on my mouth - the lack of moisture and smallness of the opening.
Hang in there honey it does get better, I’ve had severe depression since I was 16 and just in the last couple years gotten to where I can control it better, I’m 26 now so it was an 8 year struggle of me trying to figure myself out. It can be done but even I have days where I don’t want to get out of bed and be a functioning member of society but you always have support here and love.
Awesome I will def bring that up at my next appointment and see if that would help with this brain fog, hopefully it will. Thanks for the information you are awesome and I’m so happy you got some relief and help.
Keep me posted on what your doctor says about it. I am always so hesitant about new meds and this one was no different for me. But I do have more energy and I am thinking clearer and I don’t get a crash from it. He actually prescribed it for my fibromyositis but there are overlapping symptoms on all these conditions as we all know too well! But I am curious about what another doctors opinion would be. Good luck! Can’t wait for us all to find that “magic pill” lol.
Lol, yes ma’am just waiting for the day when my Dr. hands me one pill and say’s this will fix all of your issues and you’ll go back to normal just like you were before all of this crap started. Wouldn’t that be nice but I don’t think that’s in the near future and will probably not be happening until we’re all driving flying cars and they have a cure for any sickness including cancer but I can dream.
I hear ya SS sister. I recently started the Plant Paradox by Dr Steven Gundry. My brain is too foggy to actually read anything so I listened to the audio book on Audible. Fairly difficult diet, but desperate times call for desperate measures. It had a very high success rate in an autoimmune clinical trial, and also helps with depression and basically every illness you could imagine. The MD who wrote it goes up against big pharma and the “Standard american diet”, so if you look up reviews be warned that there are quite a few doctors who oppose the diet as they have these industries in their back pocket. A good intro to the diet is on the goop Podcast from april 11th, episode titled “Could changing your diet heal autoimmune disease?” My brain is usually too mushy to read or participate on these forums, but I’m here now because I’ve been having good results after being on the diet for 2 weeks so far. Good luck and keep me posted!
I deal with brain fog all the time . For example I will be cooking or doing a chore and have to stop and think about what I’m doing, I’ll have to tell myself “ ok Becky you need to pick up the spatula, or what am I doing? Oh yeah sweeping the floor” it’s so frustrating sometimes.
I hate losing words. I feel like I have Alzheimers sometimes… I mean to say “fork” but all I can come up with is knife, napkin, plate… all the related words but not what I want. I end up with people staring at me as the silence draws out while I search for the word.
I’m a therapist too… oddly enough it isn’t as bad at work but I’ve also learned to cover better. I’m scared to death of it getting worse…
YES. Even with all of the horrible pain etc. the brain fog is the worst. I haven’t been able to drive for 3 years. I never know when it will hit hard. I feel disconnected from reality to varying degrees. Unable to recall words, scatter brained. It’s horrible. I was just diagnosed yesterday and I have so much to learn. But, I’m too “out of it” to concentrate for too long.
Hi Linda, and welcome to the community! I have multiple diagnoses, and early on the brain fog and fatigue were the absolute worst. I still deal with fatigue, but it’s not as bad since I’ve been on more effective meds.