I feel like crying because my brain doesn't feel like my brain anymore.

[heidiaj]

Hello folks.  I haven't been on in awhile, but definitely could use some support from people who understand.  Sjogren's was something that was indicated as a "possible" diagnosis for me over 10 years ago, after an emergency hospital stay.  My white blood cells had tanked to the point that they did a bone marrow biopsy.  I just give that as an historic reference.  I haven't worked since 2003, but before that, I worked for 24 years in high pressure Human Resources management jobs.  Today I feel like I'm going to burst into tears, because I feel like I can't think straight anymore.  I have to slow my thoughts down so much to try to accomplish one thing, such as paying a bill online.  I'm having everything I can do to concentrate to write this post.  I just turned 61 years old.  Is this just what happens when you've had Sjogren's this long?  I also have fibromyalgia, and I know people talk of "fibro fog."  I am worried that I'm losing it.  I've read the Spoon Theory, and one of my docs told me to consider that I only have a little "tea cup" of energy, and not to overdo.  Does Sjogren's just slow down your life so that the few things that you CAN do need to be done in slow motion?  Do I have to just accept the things I can not change?  All that has happened today is that the cable guy came to check some things about our service, I went to the post office, dropped off things at a Big Sisters pickup location, dropped bags to recycle at the store, called to cancel the old cable account, put a gift and note in a friend's mailbox, and paid a bill online.  I'm giving that detail so you can see how simple my life is.  And yet, I feel so overwhelmed today that I want to cry.  Anyone have experience with this?  I'd love to hear from any of you, and thank you for taking the time to read this.

[Carolina]

Hi Heidi,

I know what you are talking about.  I think, just my opinion, that your brain fog is caused by the constant inflammatory state that affects your body, including your brain.  I usually have terrible brain fog during a 'flare' which is a spike in inflammation when my Immune System is running amok.

I see that you have several conditions, in addition to Sjogren's.  They are all related to inflammation and the damage that it does.  I too have IBS, but then also SIBO was diagnosed which for me is caused by neuropathy in my small intestine.  Everything comes back to inflammation, Heidi.

I think you might talk to you doctor(s) about some medications that might 'stimulate' your body and brain for more energy.  These are drugs typically used for ADHD, like Adderall, and Ritalin, and similar drugs.  There are those here who take them, so perhaps they will chime in.  I don't take them myself.

I also hope you have found an anti-inflammatory medication that can help reduce the pressure on your body.   I take a very low dose of Medrol (methylprednisolone) which help reduce inflammation a bit.

I can't take the standard NSAIDs because of irritation to my gastric system.  Which, by the way, has neuropathic damage, from constant inflammation.   But if you don't have that problem, you might consider Ibuprofen or Aleve.

Another suggestion would be to try an antidepressant, as well.  I took various ones for many many years with great results.  Unfortunately I can no longer take any of the antidepressants due to side effects, but depression is a co-condition of an inflammatory flare.

The co-conditions of a flare are:  profound fatigue, total body pain, and depression.

Please keep us posted.  I know it's so hard to feel overwhelmed, but sharing and hearing from others can really help.

Oh, one more thing, I have a therapist whom I see once a week....a place to vent and explore how my life is affected by my chronic conditions, the grief I bear as more and more parts of my body are affected, how my conditions affect my relationships, and how to develop coping strategies.  Therapy and this forum have saved my sanity for many years.

Regards, Elaine

[happylife]

Hi heidiaj

Sorry to hear that.

I find that osmega500 (omega 3 tablet) taken once a day makes me feel better when i have depression and insomnia

Hope this supplement can make you feel better.

Thanks

[Nomad]

Yes, it happens to me.
Try a supplement called PS 100 by Jarrow in the white bottle.
Also, eat healthy and light exercise.
Drink lots of good quality water.
Dehydration can be part of the problem.
As best as possible, get good sleep.
Baby dosage of melatonin at night..like 1 mg.
All these things have been a bit helpful for me.
Read reviews of this supplement above. It is very helpful for many re brain fog.
Other supplements to consider: a good multi d3 , b complex and fish oil.
If you have a lot of stress, short term therapy is an awesome idea!
Hope you feel better soon.

[heidiaj]

Elaine, thank you for your thoughtful response. (To my other responders, I will get back to you tomorrow probably.  I need to go slow and pace myself, taking one thing at a time...for all things in my life lately!) You are so right, Elaine...this forum can help with "sanity" quite often! I will soon meet my 5th rheumatologist during this journey...2 retired, one had an attitude problem so I "fired" her (!), and 1 just stopped her practice in my town, and I have no idea why.  I really liked her and only had her as my doc for about the last year & a half.  My best friend has been an RN for almost 40 years, but knows nothing about Sjogren's other than what she learns from me. When I told her what you wrote about inflammation and the brain, she said, "Of course!!"  What you said, and my relating it to her, helped her further understand my condition...and I know she wants to understand. 

I have been on Ritalin in the past, and more recently was prescribed Adderall.  I remember the former made me feel jumpy and the latter made me focus on one thing, but it was usually NOT something that was on the unwritten list of things needing to be done!

I'm not sure I've ever been on a regularly taken anti-inflammatory medication (been on prednisone at times).  Perhaps  I can ask my new rheumy about taking the low dose of Medrol (methylprednisolone).  Thank you for that suggestion.   

As far as the Ibuprofen, my primary lets me take 800 mg. for migraines, but I can't take it regularly ever since I had diverticulitis.   My primary suggested Tylenol Arthritis, but it doesn't do much anymore.  I do take trazadone at night to help me sleep, which is also an antidepressant, but I chose to come off all the rest of the psych meds I was on in the past.  I wanted to find out what my "norm" was, after years of feeling like a guinea pig (& allegedly, one mood stabilizer may have been the cause of my agranulocytosis).  Meeting the love of my life in the most unexpected manner 6 years ago is better than any "drug" I was ever prescribed.  I don't know what I'd do without him.  I swear my parents in heaven orchestrated his coming into my life.  I have a therapist who I've known for many years, and who I consider more of a life coach.  I should definitely check in with her.  I don't see her regularly anymore because I felt so badly having to cancel so many times because I was having such a bad day and couldn't go out.  She has always been very understanding & supportive about my whole situation, and would schedule me at the end of the day, so that if I had to cancel, she'd just get to go home earlier!  But I am so tired of not being able to make plans because I never know if I can keep them.  And I hate saying I'm going to do something and then not keeping my word.  And you are so right about the grief that comes with the stages of this illness.  I am sending you a big hug and a thank you for responding. 

[heidiaj]

Giving a shout out to happylife and Nomad for suggesting supplements that have helped them.  I will educate myself about them and discuss them with the new rheumy that I will start with next month.  Every little bit of advice helps!

To respond to a few more of Nomad's specifics, I do take 4000 IU of D3 by doctor's recommendation for chronically low Vit. D. Your note to keep hydrated is a good one.  I am always trying to push the water every day.  My last rheumy had mentioned melatonin when I was having sleep issues, but I never started it. I sleep with a CPAP and am so grateful that I have it.  For the most part, it allows me a very good quality sleep. But perhaps the melatonin would have other benefits.  As far as the diet and exercise, I struggle with both.  I have major issues with keeping any kind of routine, as I never know what my body is going to be like day to day.  I was recently prescribed physical therapy for my back (lots of arthritis, disc issues) but I was only able to make it for 2 visits, and then had to stop due to other medical issues.  As far as my diet, I am pretty dependent on my significant other for my meals and he is an Italian who  loves to cook and serve big portions.  I've been trying to educate him regarding my needs.  He's trying, but we have a long way to go.  It's a learning process.  I know I need to make both diet and some kind of regular movement a higher priority. 

Thank you happylife and Nomad for responding!

[Deb 27]

I think the inflammation that we have in our bodies attacks our brains. Sometimes I feel like I can't concentrate that thoughts are bouncing around in my head. And, that overwhelmed feeling that you mentioned. I take a multi vitamin,  quercetin, L glutathione and SMP Active. The SMP Active really helps the brain fog issue!!!! Sometimes in a matter of a few hours. If I take this, I don't have that issue. It's the best fish oil that I've taken but I also like Maxi Tears.   Don't give up! I'd stay away from stimulants if I were you. It isn't getting at the real problem, inflammation.Good luck to you.

[cccourt1942]

I hesitate to say this when the thread's originator has taken both Ritalin and Adderal, Rxed by physicians.  But here goes:  Nearly two months ago I started using CBD daily.  My particular form is in a paste form as when I began using it I had an ulcer.  Most people take it in an liquid form==called CBD oil.  X amount is mixed in juice of one's choice. 

The most overwhelming result is clearer head.  I've hesitated to use the term brain fog (TO MYSELF ABOUT MYSELF) due to my age and stage of life.  Yet when I began a daily regime of CBD it became apparent something was different.  It's as if everything is clearer.  I play bridge--every morning.  It's  a routine to start the neurons firing.  I play duplicate in order to gauge my scores against other players.  I also work on genealogy.  With DNA added to a 16 generation chart names and dates are difficult to recall as one accepts new hints.  Imagine working a jigsaw puzzle of 1000s of names!  Within ONE week--alertness to early morning bridge was evident and those pesky names/dates were easier to follow on my genealogy chart. 

The last few days i've had headaches and general body discomforts (more than usual) and all over my body.  I always look to last med added.  I stayed off of it for two days (before i realized i had a sinus infection) and absolutely;  the head fog was back with a blunt force hammer!  I couldn't believe it.

I began this intake without talking to my doctor. It's legal, it's available and i consulted with an R.D. who has numerous certifications in the health field.  I mean, I didn't go to a vape shop!  I would NOT have taken if i had been prescribed a medication which alters brain chemistry--until discussion with a doctor.  I will say this, in my "live" SjS support group there are several using it.  So we had talked amongst ourselves.  The others all have RA..and two of them are in their early 50s.

Just sayin'
c3

[Nomad]

Saw an interesting health article on Facebook re depression and lack of energy. The writer mentioned the following things as potentially helpful:
1. St Johns Wort
2. Rhodiola
3. Green Tea
4. Exercise of some kind, especially Yoga
5. Meditation
6. Reframing negative thoughts
7. Getting out in the sunshine
8. Being mindful

[irish]

Just a little tidbit I came across during research. My granddaughter has had migraines since before age 10 and they really cause her grief during the school year. I recently read info about the relationship of serotonins to migraines. The suggestion is that there are foods that will help increase the serotonins in the brain which will help lesson the severity of the migraines. Worth pursuing a search for foods that help increase serotonin.

I don't want people to think that this diet is a cure for depression as the brain is so depleted of serotonins during depression that medications that get into the blood stream at a higher level are necessary. Good luck Irish

[heidiaj]

Thank you Deb27 for your helpful suggestions.  The SMP Active sounds like a really good option!  After 10+ years of dealing with this illness, I think I'm finally realizing that I need to look to make any small changes in my life that will improve the quality of my life.   I am trying so hard to prolong my functionality.  And I agree with you...I have no need of stimulant trials anymore.  And you are the second Hero Member to mention the issue of inflammation effecting other dimensions of our lives!  Thank you for the good wishes!

To c3: Thank you for your honest offering of what has helped you.  I have had numerous people suggest that I smoke pot for the pain I have.  My son uses it for anxiety and his boyfriend even has the medical card for it, as does his mom who's had cancer.  I will consider any suggestions that people give me.  It sounds like you have experienced a dramatic effect.  I, too, do genealogy, and I know what you mean about all the details.  There are times that I can't even look at it!  I just love this forum and how so many people are willing to share in order to help others.  I used to smoke obsessively and also vaped.  My counselor said that she had NEVER seen anyone whose activity level & functionality shifted into high gear so dramatically when they returned to smoking. It made my brain work.  It was like night and day.  I haven't had a cigarette in over 15 months (just had one bad day then, and smoked a pack!) and before that, I had another 7 months of nicotine abstinence.  I quit because I have asthma, and of course, we Sjogren's patients have to worry about lung issues anyway.  But maybe the CBD will help in the same way...?  Thank you for sharing your story. 

Nomad, thanks for weighing in again.  The article you noted named a number of things I know I need to include in my battle against the brain stuff.  The counselor that I went to for years was big on mindfulness.  The beautiful spring weather we have in New England right now is helping, and I am trying to spend some time outside.  I have had depression in the past, but this is not depression.  I planned a nice little vacation for my honey & I recently, and I WANT to get a lot of things done.  I just need the right "key to the ignition!"  The things you mentioned, though, are certainly part of a winning package! 

And Irish, I will look into your suggestion of adding foods that may help increase one's serotonin level.  I am working to incorporate diet changes into my "master plan" of improved function.  I have a LOT of work to do, and I am willing to do it.  I just have to get over the bumps in the road like the one I experienced the day I made my original post.  My brother used to run marathons and talked about the feeling of "hitting the wall," when you were so fatigued that everything seemed to just want to shut down.  That's what I've experienced on days like the one that I described in my first post....hitting a wall.  Thank you, Irish, for posting as well.  I am so grateful for all of you!!

[Gorn]

Feeling like I am no longer "sharp" was one of the scariest symptoms to adjust to.
During a flare I can't remember things, experience definite brain fog, and it seems like I process things very slowly. 
I find myself telling people I can't make a decision on that today, because I just can't absorb all the facts.

I am no longer working in part for this reason. I was doing construction type work, including work with electricity, and I had a real fear of making a mental mistake that could have resulted in myself or someone else getting hurt. 

There are days I just cannot have a lot on my plate, and it can be very discouraging. 
Lately I've been trying to focus on what I am accomplishing. I still get things done on the "good" days, good being rather relative. 
Still trying to figure out what the new normal is. 

[bluegardenia]

DEB 27 please what is smp active? thanks

[trejonina]

Hi, breathing fuels the brain . I recomend the first super brain yoga breathing exercise in this video, google youtube+5 minute daily routine:Super Brain Yoga+Donna Eden short version. The first exercise is great. Do it 12 times.Then look, google, up alternate nostril breathing.This last one can be done sitting down. I try to do breathing exercises every day,it works !!They also calm our anxiety. Luck