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The Confounding Impact of Post Exertional Malaise Part III - genes, mitchondria, autoimmunity, oh my!

Note: This is a Part Three of a blog about Post Exertional Malaise (PEM).  Read parts one and two to catch up.  In the first two posts of this series, I wrote about my personal experience with Post Exertional Malaise and what was known about it.  Since then, a lot more information is available thanks to increased visibility, research studies, and healthcare system support.  This post is a deeper dive on mechanisms of Post Exertional Malaise, and the next post will be what the heck to do about it.  To review, Post Exertional Malaise (PEM), according to the CDC is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. Yes, after exercise most normal people will feel tired, sore, lightheaded, or foggy, and then recover within a day or so.  People with PEM do not recover so quickly, and remain unwell for days, weeks, or months.  P eople with PEM will also have symptom
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My Journey with Personal Disability Insurance and SSDI

  It feels like a strange thing to celebrate.  Regardless, I write today with the good news that finally, my personal disability insurance has come through!  🎉🎉 ---------- Author note:  I actually drafted this blog in July 2024, and continue to receive personal disability after  another quarterly medchart review by my insurance company.  I think it makes sense though to keep this blog written as it is, with the feelings I had about it this summer.  _______ There are many reasons to celebrate this.  After struggling with Long COVID symptoms for two years, I'm unable to work. In the course of my body breaking down from trying to work and failing I've also experienced significant income losses from my private physical therapy practice.  When my husband and I found out that my income stream was (partially) coming back due to my personal disability claims getting approved, we cried with relief.   Another reason to celebrate is it is exceedingly difficult  to prove disability from
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Why a Long COVID Diagnosis is Important

I've heard a few stories that have concerned me lately, beyond someone going to their primary care to discuss Long COVID, and the doctor admitting they need to do some research before they can help (which is completely understandable -- this is a new condition!).  The first one comes from a friend struggling with a resurgence of autoimmune symptoms along with fatigue and sleep problems.  While this person has not tested positive, the symptoms came about during the course of the pandemic.  They've been in and out of multiple doctors and specialists, with no clear diagnosis.  Thankfully some drug prescriptions have helped calm down most of the symptoms.  Knowing all of their symptoms are on the top ten list for people with Long COVID, AND up to 30% of people with Long COVID have never had Acute COVID symptoms, AND that Long COVID often comes with an acquiring of a or worsening of autoimmune disease, we encouraged this person to talk to their medical team about it.  The team's
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Relapse

As I type today I've got my feet up on a pillow and have some slight tremors remaining in my fingers.  Over the past month I've been set back by a relapse of my Long COVID symptoms.  I think it's important to write about this especially to help any of you out there feeling at a loss when your abilities suddenly change.   Before the relapse hit, I was doing pretty well.  I was able to perform some light house chores, hold conversation with my family and friends, and even go to the grocery store without needing the rest of the day to recover.   My imagination was starting to run on me, thinking of projects and plans I could pursue in the garden, in the house, and on this blog.  Then a couple of things happened.  First, I had a neurocognitive evaluation for two x half day sessions.  The good news is we learned that my cognition is doing very well!  The bad news is I'm like a computer running on low battery.  I can only do so much until I start experiencing concussion-like
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A Support Group for People with Long COVID

I am pleased to announce that a peer of mine with Clear Path Counseling and Wellness is starting a support group for people with fatigue issues, including Long COVID.  Also consider this group if you have Chronic Fatigue Syndrome, Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Chronic Pain, or any condition that limits your energy to move and think.  I myself will be participating in this group, and I hope to meet some of you there.  Here is the link to register: https://checkout.square.site/buy/EWHZ3WLI6SUJGQLY4GUGQTMQ The full description is below:  Finding an Okay Within Fatigue: A Support Group for People with Long COVID or Chronic Illness Whether you find yourself working through flareups of fatigue, feelings of frustration or grief, loss of social connection, or adjusting your lifestyle around the health impacts of a chronic condition, this group is designed to provide a safe space to be witnessed in community as you work through that impact with support.   Th
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The Confounding Impact of Post Exertional Malaise: Part Two

 Note: This is a Part Two of a blog about Post Exertional Malaise (PEM).  To read Part One, click here.  I used to be a very active person.  I love nordic skiing, hiking, climbing, and backpacking.  My husband and I like to garden and go birding in the evenings.  Back in Fall 2022, when I was first struggling with Long COVID symptoms, I found myself late canceling on climbing and camping trips with friends.  Gardening had become exhausting and I didn't know why.  So I did what any American would do - I assumed I contracted some form of laziness and looked for something new to motivate me.  This is when I found the wonderful small coaching business called Catalyst Rowing . For any of you who DON'T have PEM, I highly recommend checking them out!  Martha Laugen "Coach Martha", is an amazing woman who has created a safe and inclusive fitness community focused on working out with indoor rowing machines.  I immediately fell in love with the sport.  As a physical therapist I
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New Favorite Resource - UT Austin Health Doctor Explains Long COVID Treatment

 Hi everyone, I'm always keeping an eye out for up to date information on Long COVID treatment, and this just crossed my YouTube feed.  Now, let's all remember to take anything from YouTube (or TikTok. or Facebook. or Instagram) with a grain of salt.  But this is from a medical doctor on, the feed of an accredited and well-regarded university.  So it passes my sniff test.   Upon watching I realized this is ONE OF THE BEST short summaries of the symptoms of and treatment for Long COVID.  I'm out of energy today to write more, but stay tuned for a blog where I write about what I am doing and how that fits with his treatment plan.  I am also adding this video to my resource link blog.  Check that out as well for more helpful info on Long COVID . 
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