Colleen Young, Connect Director | @colleenyoung | Apr 19, 2022
Hi @babsg1, welcome. I'm inviting @leezer and @vcornette1 and @SusanEllen66 into this discussion to share their experiences with CNS vasculitis or vasculitis and brain fog. @becsbuddy@marye2 and @astaingegerdm also know first hand what it is like to deal with brain fog related to an autoimmune condition.
Barb, I was reading your other posts and I see that you may also be dealing with long COVID. Were you diagnosed with CNS vasculitis before COVID or is this something that happened due to COVID? Not that it really matters which came first, since recovery for both often involves dealing with cognitive issues, memory and brain fog. Do you know if you have primary or secondary CNS vasculitis?
@good morning @babsg1 I, too, had brain fog after an autoimmune disease caused lesions on my brain. It wasn’t fun, but i got through. There are lots of articles on brain fog—I’ll see if i can find one for you. https://connect.mayoclinic.org/comment/674784/
How long have you had the brain fog? How is your vasculitis being controlled?
Hi @babsg1, welcome. I'm inviting @leezer and @vcornette1 and @SusanEllen66 into this discussion to share their experiences with CNS vasculitis or vasculitis and brain fog. @becsbuddy@marye2 and @astaingegerdm also know first hand what it is like to deal with brain fog related to an autoimmune condition.
Barb, I was reading your other posts and I see that you may also be dealing with long COVID. Were you diagnosed with CNS vasculitis before COVID or is this something that happened due to COVID? Not that it really matters which came first, since recovery for both often involves dealing with cognitive issues, memory and brain fog. Do you know if you have primary or secondary CNS vasculitis?
Hi @babsg1, welcome. I'm inviting @leezer and @vcornette1 and @SusanEllen66 into this discussion to share their experiences with CNS vasculitis or vasculitis and brain fog. @becsbuddy@marye2 and @astaingegerdm also know first hand what it is like to deal with brain fog related to an autoimmune condition.
Barb, I was reading your other posts and I see that you may also be dealing with long COVID. Were you diagnosed with CNS vasculitis before COVID or is this something that happened due to COVID? Not that it really matters which came first, since recovery for both often involves dealing with cognitive issues, memory and brain fog. Do you know if you have primary or secondary CNS vasculitis?
Hi Colleen. I had primary CNS vasculitis 11 years ago that attacked my brain. I was on chemo for approx 9-10 months. Fortunately I survived yet found myself struggling for words afterwords. I tried going back to work and did work for 7 years after the CNSV. Started out fulltime then to part time then gave up. I had difficulty focusing on tasks, unable to make decisions and carry through, brain fog and cognitive problems. I muddled through life and knew I was not the person cognitively that I used to be before CNSV. Then in Oct 2021 I was hospitalized with Covid. I was fortunate to leave the hospital alive. My daughters were very happy. Now I brain fog, chronic fatigue, insomnia, irritable moods, headaches, etc. Absolutely no motivation to exercise and I was previously a “gym rat.” After I stopped working I turned to exercise to feel better. Now nothing. Somewhere along the way since Covid I lost my motivation for life. I am not suicidal, It takes every once of energy I have to get thru a day.
Hope I answered your question.
Hello to my new friends. I hope to add a hug to the group while getting my needed share of understanding. In 2000, two month before my mother died from Alzheimer's, I was diagnosed with fibromyalgia. I thought I had done something ungodly to myself but learned it was autoimmune; now they say not so. It isn't autoimmune. Still got it whatever you want to call it 🤔. After 7 years of being Mom's caregiver, I still thought I was guilty for my misery. I was a bank teller and had to be so careful when doing transactions, as you can imagine, but I was also embarrassing myself with my slip ups. Oh, this syndrome includes brain fog? Perfect! I lost some of my joy in conversations with the knowledge that I had forgotten what I was talking about; or important points of proof weren't there anymore. If my husband was present, he would pick up the slack but my children had looks of 'what's wrong, Mom?'. Then in 2021 I started vomiting blood...9 days in ICU... I have non-alcoholic cirrhosis of the liver - final stage. One to three years at best, you say? At 72, I'm not at the top of the list for transplant. Wasn't fibromyalgia enough? I've become far more compassionate than a room full of grammas! I'm eager to read educated articles on either health issue. So hopeful to speak with others that are my shoe size...🤗. Bette Wilson
Hello to my new friends. I hope to add a hug to the group while getting my needed share of understanding. In 2000, two month before my mother died from Alzheimer's, I was diagnosed with fibromyalgia. I thought I had done something ungodly to myself but learned it was autoimmune; now they say not so. It isn't autoimmune. Still got it whatever you want to call it 🤔. After 7 years of being Mom's caregiver, I still thought I was guilty for my misery. I was a bank teller and had to be so careful when doing transactions, as you can imagine, but I was also embarrassing myself with my slip ups. Oh, this syndrome includes brain fog? Perfect! I lost some of my joy in conversations with the knowledge that I had forgotten what I was talking about; or important points of proof weren't there anymore. If my husband was present, he would pick up the slack but my children had looks of 'what's wrong, Mom?'. Then in 2021 I started vomiting blood...9 days in ICU... I have non-alcoholic cirrhosis of the liver - final stage. One to three years at best, you say? At 72, I'm not at the top of the list for transplant. Wasn't fibromyalgia enough? I've become far more compassionate than a room full of grammas! I'm eager to read educated articles on either health issue. So hopeful to speak with others that are my shoe size...🤗. Bette Wilson
Welcome, Bette. I'm greeting you with a big hug. Yes, fibromyalgia is enough, but it looks like you've been handed more, creating your unique bag of multiple chronic conditions.
Some of your struggles like brain fog overlap with @babsg1 and I encourage you to continue to connect together in this discussion.
Also, allow me to provide some links to additional groups and specific discussions where you can connect with others who have fibromyalgia, NASH, and aging well.
First, I invite everyone to follow the Aging Well and Just Want to Talk groups where members are sharing tips and embracing strategies no matter what multiple condition they have and talk about non-health stuff too, like art, books, journaling, animals and more.
> Aging Well group https://connect.mayoclinic.org/group/aging-well/
> Just Want To Talk https://connect.mayoclinic.org/group/other/
Hello to my new friends. I hope to add a hug to the group while getting my needed share of understanding. In 2000, two month before my mother died from Alzheimer's, I was diagnosed with fibromyalgia. I thought I had done something ungodly to myself but learned it was autoimmune; now they say not so. It isn't autoimmune. Still got it whatever you want to call it 🤔. After 7 years of being Mom's caregiver, I still thought I was guilty for my misery. I was a bank teller and had to be so careful when doing transactions, as you can imagine, but I was also embarrassing myself with my slip ups. Oh, this syndrome includes brain fog? Perfect! I lost some of my joy in conversations with the knowledge that I had forgotten what I was talking about; or important points of proof weren't there anymore. If my husband was present, he would pick up the slack but my children had looks of 'what's wrong, Mom?'. Then in 2021 I started vomiting blood...9 days in ICU... I have non-alcoholic cirrhosis of the liver - final stage. One to three years at best, you say? At 72, I'm not at the top of the list for transplant. Wasn't fibromyalgia enough? I've become far more compassionate than a room full of grammas! I'm eager to read educated articles on either health issue. So hopeful to speak with others that are my shoe size...🤗. Bette Wilson
I have MCTD (Mixed Connective Tissue Disease) and fibro is definitely a part of that. I find that a morning walk, B-12 sublingual and keeping up hydration help a lot. Other than that, I use lists to track tasks and break complex tasks into chunks. I do lots better in the mornings. Organization is key: use clips to put items together so you do not add sorting to the task, put things where they belong all the time (like keys, glasses, purse, etc) and simplify in general.
You certainly have a full plate and have a good plan on how to deal with it. I recognize my need for more water in take and know that would probably solve other issues but your organization tips are top line. I make greeting cards and comfort kits of encouraging scriptures so there is always papers and reshuffling of papers. I paper clip most of my work to ease some confusion but often hit a wall and stop cold mid stream. Then I back tract to get a grip on myself and not lose my momentum but a bit of panic comes into play. It slows me down but I try to forge forward as I had made myself a deadline as a stimulus. Is it possible that I self impose my problem or is this the way things flow? Even my speech seems to follow the same pattern. Add to this the NASH, and I'm being tossed about in a storm. I've just described my typical day. Thanks for reading my letter and perhaps you have some constructive criticism for me to consider. Hugs to a fellow survivor... Bette
Hi Colleen. I had primary CNS vasculitis 11 years ago that attacked my brain. I was on chemo for approx 9-10 months. Fortunately I survived yet found myself struggling for words afterwords. I tried going back to work and did work for 7 years after the CNSV. Started out fulltime then to part time then gave up. I had difficulty focusing on tasks, unable to make decisions and carry through, brain fog and cognitive problems. I muddled through life and knew I was not the person cognitively that I used to be before CNSV. Then in Oct 2021 I was hospitalized with Covid. I was fortunate to leave the hospital alive. My daughters were very happy. Now I brain fog, chronic fatigue, insomnia, irritable moods, headaches, etc. Absolutely no motivation to exercise and I was previously a “gym rat.” After I stopped working I turned to exercise to feel better. Now nothing. Somewhere along the way since Covid I lost my motivation for life. I am not suicidal, It takes every once of energy I have to get thru a day.
Hope I answered your question.
Hi @babsg1 !
I’m another foggy one.
Reading your post made something clear to me about myself that I have not been able to put a name on yet. Motivation.
I have the same lack of motivation to exercise as you do and I used to be very active. Also, losing motivation for life. I’m not suicidal either, maybe a bit depressed, but mostly sad.
I have the feeling that my life is over- I’m 77.
Logically, I know I’m totally wrong. I have had therapy for a long time- I don’t think it helps anymore though.
My brain fog from fibromyalgia started when I was young -stress from work. Hereditary too.
The fog thickened after chemo for breast cancer 30 years ago.
13 years ago I was diagnosed with autoimmune colitis.
It waxed and waned for years- I didn’t function well for years.
I finally had immunosuppressive treatment 5 years ago, clearing all colitis symptoms.
I still had mental and physical fatigue, but tried to get back to normal activities.
Something strange had happened- I could not remember how to hit a tennis ball! I had played for years. I finally got the hang of it- but I don’t have the same edge.
Also, I had difficulty parking the car straight in a parking spot and judging how far in I was.
I’m still not “ normal “, I still have some inflammation in my GI system. Fatigue follows.
Sending you an energy hug!
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Hi @babsg1, welcome. I'm inviting @leezer and @vcornette1 and @SusanEllen66 into this discussion to share their experiences with CNS vasculitis or vasculitis and brain fog. @becsbuddy @marye2 and @astaingegerdm also know first hand what it is like to deal with brain fog related to an autoimmune condition.
Barb, I was reading your other posts and I see that you may also be dealing with long COVID. Were you diagnosed with CNS vasculitis before COVID or is this something that happened due to COVID? Not that it really matters which came first, since recovery for both often involves dealing with cognitive issues, memory and brain fog. Do you know if you have primary or secondary CNS vasculitis?
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3 Reactions@good morning @babsg1 I, too, had brain fog after an autoimmune disease caused lesions on my brain. It wasn’t fun, but i got through. There are lots of articles on brain fog—I’ll see if i can find one for you.
https://connect.mayoclinic.org/comment/674784/
How long have you had the brain fog? How is your vasculitis being controlled?
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3 Reactions@babsg1 here is an article i found on brain fog. I will look for others. Hope this will help
https://www.healthline.com/health/brain-fog
https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/Cancer_Related_Brain_Fog.pdf
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2 ReactionsThanks, but I don’t have CNS Vasculitis. My Polyarthritis Nodosa has caused me to have peripheral neuropathy.
I have brain fog from fibromyalgia.
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2 ReactionsHi Colleen. I had primary CNS vasculitis 11 years ago that attacked my brain. I was on chemo for approx 9-10 months. Fortunately I survived yet found myself struggling for words afterwords. I tried going back to work and did work for 7 years after the CNSV. Started out fulltime then to part time then gave up. I had difficulty focusing on tasks, unable to make decisions and carry through, brain fog and cognitive problems. I muddled through life and knew I was not the person cognitively that I used to be before CNSV. Then in Oct 2021 I was hospitalized with Covid. I was fortunate to leave the hospital alive. My daughters were very happy. Now I brain fog, chronic fatigue, insomnia, irritable moods, headaches, etc. Absolutely no motivation to exercise and I was previously a “gym rat.” After I stopped working I turned to exercise to feel better. Now nothing. Somewhere along the way since Covid I lost my motivation for life. I am not suicidal, It takes every once of energy I have to get thru a day.
Hope I answered your question.
-
Like -
Helpful -
Hug
4 ReactionsHello to my new friends. I hope to add a hug to the group while getting my needed share of understanding. In 2000, two month before my mother died from Alzheimer's, I was diagnosed with fibromyalgia. I thought I had done something ungodly to myself but learned it was autoimmune; now they say not so. It isn't autoimmune. Still got it whatever you want to call it 🤔. After 7 years of being Mom's caregiver, I still thought I was guilty for my misery. I was a bank teller and had to be so careful when doing transactions, as you can imagine, but I was also embarrassing myself with my slip ups. Oh, this syndrome includes brain fog? Perfect! I lost some of my joy in conversations with the knowledge that I had forgotten what I was talking about; or important points of proof weren't there anymore. If my husband was present, he would pick up the slack but my children had looks of 'what's wrong, Mom?'. Then in 2021 I started vomiting blood...9 days in ICU... I have non-alcoholic cirrhosis of the liver - final stage. One to three years at best, you say? At 72, I'm not at the top of the list for transplant. Wasn't fibromyalgia enough? I've become far more compassionate than a room full of grammas! I'm eager to read educated articles on either health issue. So hopeful to speak with others that are my shoe size...🤗. Bette Wilson
-
Like -
Helpful -
Hug
5 ReactionsWelcome, Bette. I'm greeting you with a big hug. Yes, fibromyalgia is enough, but it looks like you've been handed more, creating your unique bag of multiple chronic conditions.
Some of your struggles like brain fog overlap with @babsg1 and I encourage you to continue to connect together in this discussion.
Also, allow me to provide some links to additional groups and specific discussions where you can connect with others who have fibromyalgia, NASH, and aging well.
First, I invite everyone to follow the Aging Well and Just Want to Talk groups where members are sharing tips and embracing strategies no matter what multiple condition they have and talk about non-health stuff too, like art, books, journaling, animals and more.
> Aging Well group https://connect.mayoclinic.org/group/aging-well/
> Just Want To Talk https://connect.mayoclinic.org/group/other/
Fibromyalgia discussions (there are many) can be found in the Chronic Pain group https://connect.mayoclinic.org/group/pain/
Maybe start here:
- Have you found anything to successfully treat fibromyalgia pain? https://connect.mayoclinic.org/discussion/dealing-with-fibromyalgia-pain/
NASH discussions are in the Digestive Health group or Transplants group. Here's a good place to start:
- NASH and cirrhosis of the liver. https://connect.mayoclinic.org/discussion/nash-and-cirrhosis-of-the-liver/
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3 ReactionsI have MCTD (Mixed Connective Tissue Disease) and fibro is definitely a part of that. I find that a morning walk, B-12 sublingual and keeping up hydration help a lot. Other than that, I use lists to track tasks and break complex tasks into chunks. I do lots better in the mornings. Organization is key: use clips to put items together so you do not add sorting to the task, put things where they belong all the time (like keys, glasses, purse, etc) and simplify in general.
-
Like -
Helpful -
Hug
5 ReactionsYou certainly have a full plate and have a good plan on how to deal with it. I recognize my need for more water in take and know that would probably solve other issues but your organization tips are top line. I make greeting cards and comfort kits of encouraging scriptures so there is always papers and reshuffling of papers. I paper clip most of my work to ease some confusion but often hit a wall and stop cold mid stream. Then I back tract to get a grip on myself and not lose my momentum but a bit of panic comes into play. It slows me down but I try to forge forward as I had made myself a deadline as a stimulus. Is it possible that I self impose my problem or is this the way things flow? Even my speech seems to follow the same pattern. Add to this the NASH, and I'm being tossed about in a storm. I've just described my typical day. Thanks for reading my letter and perhaps you have some constructive criticism for me to consider. Hugs to a fellow survivor... Bette
-
Like -
Helpful -
Hug
3 ReactionsHi @babsg1 !
I’m another foggy one.
Reading your post made something clear to me about myself that I have not been able to put a name on yet. Motivation.
I have the same lack of motivation to exercise as you do and I used to be very active. Also, losing motivation for life. I’m not suicidal either, maybe a bit depressed, but mostly sad.
I have the feeling that my life is over- I’m 77.
Logically, I know I’m totally wrong. I have had therapy for a long time- I don’t think it helps anymore though.
My brain fog from fibromyalgia started when I was young -stress from work. Hereditary too.
The fog thickened after chemo for breast cancer 30 years ago.
13 years ago I was diagnosed with autoimmune colitis.
It waxed and waned for years- I didn’t function well for years.
I finally had immunosuppressive treatment 5 years ago, clearing all colitis symptoms.
I still had mental and physical fatigue, but tried to get back to normal activities.
Something strange had happened- I could not remember how to hit a tennis ball! I had played for years. I finally got the hang of it- but I don’t have the same edge.
Also, I had difficulty parking the car straight in a parking spot and judging how far in I was.
I’m still not “ normal “, I still have some inflammation in my GI system. Fatigue follows.
Sending you an energy hug!
-
Like -
Helpful -
Hug
7 Reactions