1. < Autoimmune Diseases

Dealing with brain fog: What helps you?

Posted by jlo70 @jlo70, Jan 25, 2022

I’m 51 years old and new to the psoriatic arthritis auto immune world, having been diagnosed two years ago. My symptoms kicked into high gear the past year, and I’m experiencing plenty of physical issues, but the one that might be the most frustrating is the intense brain fog that’s with me daily. It’s making it difficult for me to do my job well, and it’s starting to really cause me a lot of concern and doubt about my ability to continue with my current job because it’s very mentally demanding.

I’m desperately hoping to hear from some folks who have dealt with brain fog issues and how you managed or eliminated it so that you could get back to normal functioning. I’m feeling a bit scared right now at my general lack of mental acuity. I plan to talk to my rheumatologist and see what she recommends, but I would also love to hear any tips from this group since so many of you have been dealing with this for much longer than I have. Thanks in advance!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Mentor
Becky, Volunteer Mentor | @becsbuddy | Jan 31, 2022

@petuniamom567 i found this info that says ME and CFS are really the same thing, just different names. It was interesting
. https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

Have you found a ME/CFS center near you?

REPLY
petuniamom567 | @petuniamom567 | Jan 31, 2022

No ME/CFS near me. Wish I could find one in Augusta, GA or North Augusta, SC or near by. Local med school does not have one. No doctor is
specialist. Have needed help for 40 years. Appreciate any information. Thank you.

REPLY
petuniamom567 | @petuniamom567 | Feb 3, 2022

According to the English, ME/CFS is the same thing. The ME means the brain lining is inflamed that results in the Chronic Fatigue Syndrome. Supposedly done sophisticated MRI's on this. No marker found in blood yet. This is part of what hunt is for. No one really sure. It's also obvious that if
you're sick, you may feel like you have CFS. This relates to long Covid. But since not much has been learned about ME/CFS is 40 years or so, we're sort of at square one. Maybe Covid virus will be the great unlocker. Who knows.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 21, 2022
In reply to @petuniamom567 "Interesting to listen to all Brain Fog comments.I've had Brain Fog for 40 years. I have..." + (show)
@petuniamom567

Interesting to listen to all Brain Fog comments.I've had Brain Fog for 40 years. I have ME/CFS. No one seems to do anything about it including neurologists. Since ME/CFS , according to the English medical community is some sort of encephalitis, it seems amazing to me that no one has investigated brain fog and this disease. In America, no one really does anything. Now, they're trying to tie Brain Fog to Long Covid. What does Long Covid
do to the brain. Has anyone examined that? All I can say is that there are many people whose lives are being ruined by the inability to think clearly. I have Brain Fog off and on but it stopped me from having a career. It's done that to many people. It's not considered a "sexy" disease because tons of research money are not devoted to it. With the addition of ME/CFS and Covid, there should be enough people to encourage doctors to examine .I'm waiting even though I'm old and I'm hoping for the best for everyone. Also, could we start a Brain Fog discussion group in order to compare symptoms?

Jump to this post

@petuniamom567 and others interested in Chronic Fatigue Syndrome, I thought you might appreciate a list of related discussions:
- Autoimmune Fatigue and/or Chronic Fatigue: https://connect.mayoclinic.org/discussion/autoimmune-fatigue-and-or-chronic-fatigue/
- Help with Chronic Fatigue Syndrome: https://connect.mayoclinic.org/discussion/help-with-chronic-fatigue-syndrome/
- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

You're right that brain fog is attributed to multiple conditions including autoimmune diseases, cancer-related brain fog, CFS, and now COVID. I have updated the title of this discussion group to include all types of brain fog and added the discussion to relevant groups so that everyone experiencing brain fog can be brought together in one place.

What helps you when you're struck with brain fog?

REPLY
1 reply
jlo70 | @jlo70 | Feb 22, 2022
In reply to @colleenyoung "@petuniamom567 and others interested in Chronic Fatigue Syndrome, I thought you might appreciate a list of..." + (show)
@colleenyoung

@petuniamom567 and others interested in Chronic Fatigue Syndrome, I thought you might appreciate a list of related discussions:
- Autoimmune Fatigue and/or Chronic Fatigue: https://connect.mayoclinic.org/discussion/autoimmune-fatigue-and-or-chronic-fatigue/
- Help with Chronic Fatigue Syndrome: https://connect.mayoclinic.org/discussion/help-with-chronic-fatigue-syndrome/
- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

You're right that brain fog is attributed to multiple conditions including autoimmune diseases, cancer-related brain fog, CFS, and now COVID. I have updated the title of this discussion group to include all types of brain fog and added the discussion to relevant groups so that everyone experiencing brain fog can be brought together in one place.

What helps you when you're struck with brain fog?

Jump to this post

@colleenyoung thanks so much for these resources. So far, I find that staying away from processed foods, eating as many whole, healthy foods as possible, staying away from sugar, and taking sulfasalazine has helped, although it’s tough to eat fully “clean” with others in the home who don’t want to eat that way all the time, so I could probably be doing better if I could tackle that challenge.

REPLY
2 replies
rxharleydude | @rxharleydude | Nov 9, 2023
In reply to @astaingegerdm "@jlo70 - I started out with chemo brain 30 years ago. Eventually, I leveled out and..." + (show)
@astaingegerdm

@jlo70 - I started out with chemo brain 30 years ago. Eventually, I leveled out and could feel confident managing my high pressure job.
Once I developed an autoimmune illness, brain fog really set in - waxing and waning with disease activity.
I’m retired now and I don’t have to feel focused all the time- except when playing tennis! I find it necessary to take a caffeine pill or a cup of strong coffee before getting on the court.
I also do a lot of crossword puzzles.
I have a feeling that CNS stimulants such as Ritalin or Adderall would help too- maybe if I was still working I would have looked into trying it.

Jump to this post

I use a medication called “Modafinil”. It affects the mind, causing feelings of alertness, enhanced thinking, and perception. Sometimes I can reduce the dosage to a half or even a quarter tab & get adequate results for fatigue &/or mental alertness. It’s available generically as a 100 mg tablet. Its original use was to treat daytime sleepiness, or narcolepsy.

REPLY
1 reply
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Nov 9, 2023
In reply to @rxharleydude "I use a medication called “Modafinil”. It affects the mind, causing feelings of alertness, enhanced thinking,..." + (show)
@rxharleydude

I use a medication called “Modafinil”. It affects the mind, causing feelings of alertness, enhanced thinking, and perception. Sometimes I can reduce the dosage to a half or even a quarter tab & get adequate results for fatigue &/or mental alertness. It’s available generically as a 100 mg tablet. Its original use was to treat daytime sleepiness, or narcolepsy.

Jump to this post

@rxharleydude
Thanks for the information! It’s good to hear that it helps you. Something to keep in mind.

REPLY
buddabu | @buddabu | Nov 10, 2023
In reply to @jlo70 "@colleenyoung thanks so much for these resources. So far, I find that staying away from processed..." + (show)
@jlo70

@colleenyoung thanks so much for these resources. So far, I find that staying away from processed foods, eating as many whole, healthy foods as possible, staying away from sugar, and taking sulfasalazine has helped, although it’s tough to eat fully “clean” with others in the home who don’t want to eat that way all the time, so I could probably be doing better if I could tackle that challenge.

Jump to this post

I understand your dilemma! I have a really thin husband who struggles to maintain a healthy weight, while I on the other hand struggle to lose weight. So I have to cook high calorie meals and try hard not to eat much. It is a challenge for sure.

REPLY
1 reply
dlydailyhope | @dlydailyhope | Nov 10, 2023

I empathize with the fear of brain fog and trying to maintain a demanding job, taking care of home and family and self. For me, I am a single parent of a teen, 54, and my brain fog got really bad when I was undiagnosed with iron deficiency, sleep apnea, Hashimoto’s thyroiditis, small fiber neuropathy, cervical spondylitic myelopathy, breast implant illness, etc. Once I was diagnosed for everything and treated (took over 6 years to get diagnosis), my brain fog has improved. I am sleeping better (use cpap), no longer iron deficient (had d and c and IUD put in to reduce severe menstrual cycles), take thyroid medication (recently increased which is helping with symptoms of weakness and fatigue), had cervical spine surgery which has decompressed my spinal cord (able to control arms and legs and bladder better and much fewer daily headaches), had implants removed which has relieved some brain fog and concentration issues (due to toxins), etc. You really need to get answers to the causes of your symptoms and not give up until you find doctors who listen and help to diagnose the cause. I am perimenopause and have dealt with chronic pain and mood swings/depression and recently put on Prozac which has also helped to regulate emotions (there were times I just did not want to live anymore and exhausted from all of the disappointments and time/money wasted trying to get diagnosed. Quality of life really takes a beating and you need to take care of yourself to be able to manage life and make good decisions. Best of luck to you on your heath care journey!

REPLY
TSB | @terrirussell | Nov 11, 2023

What helps me the most is sinus spray w Cromolyn in it…..Godsend!

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