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Central Nervous System Vasculitis and dealing with brain fog
Autoimmune Diseases | Last Active: Dec 14, 2023 | Replies (13)Comment receiving replies
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
Replies to "Hello to my new friends. I hope to add a hug to the group while getting..."
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.
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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/
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/