Wednesday, March 22, 2023

Chronic Illness Vlog: Doctors, Improvement, Nature & a Small Celebration


I just uploaded a new chronic illness vlog, from last week. My vlogs show an honest view of my life with ME/CFS and Lyme disease, with all its ups and downs.

Last week was actually pretty good, an excellent trend for me! I am finally coming back to life after my terrible relapse last fall, where one set of hormonal shifts sent my whole body into chaos. In this video, I mention a couple of doctor's appointments: one that helped my back pack and another to my primary care doctor for another--and hopefully the last--adjustment to my thyroid meds. I am gradually getting back to a more stable place health-wise. 

Since I was feeling pretty good, I was also out and about more than usual and able to take advantage of some nice weather and early signs of spring!

You can watch my video on Youtube or I'll insert it right here:

 

How are YOU doing?

What was last week like for you?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.


Wednesday, March 15, 2023

Chronic Illness Vlog: Ups & Downs and Lots of Nature!


I posted a new chronic illness vlog last week but forgot to share it here. This was recorded at the end of February and first week of March.

It was a week of mild ups and downs, with no bad crash days--those are once again becoming rare, thank goodness. I spent some time with my older son, who is now 28 and has had chronic illnesses since age 10, so there are some thoughts on parenting a sick kid. And this vlog includes lots of peaceful, calming video of nature, since I was able to take several walks that week (my stamina is also improving!).


I'm recording another vlog this week that I will post next week. And this past weekend, my husband and I enjoyed a long-overdue weekend getaway to a rental cottage about an hour away located right on the water, with gorgeous views. I'll include some photos and videos of that, too.

How are YOU doing?

What was last week like for you?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Tuesday, March 14, 2023

TV Tuesday: Will Trent

My husband and I are loving the new ABC show, Will Trent, with its unique spin on a crime drama, with original characters, excellent acting, and a sense of humor. 

Special Agent Will Trent, played by Ramon Rodriguez, has the highest clearance rate for the GBI, Georgia Bureau of Investigation. Many of his colleagues, though, just think he's strange. He has an on-again-off-again romantic relationship but lifetime friendship with Angie Polaski (played by Erika Christensen, who I remember fondly from Parenthood). Angie is an Atlanta Police (APD) Detective, so they often work together on difficult cases. Both Will and Angie grew up in foster care, which gives them a unique point of view. Will is determined that no one ever feels abandoned like he did, from the stray dog he finds to the victims of the crimes he investigates. His boss, Amanda Wagner, played by Sonja Sohn, is tough but fair and clearly recognizes Will's talents when it comes to solving cases. Angie's partner, Michael (played by Jake McLaughlin, who we enjoyed in Quantico and Believe), isn't so sure about Will and is put off by his three-piece suits and stiff demeanor. The GBI and APD often work together to solve cases, so there is sometimes some friction there. Behind the scenes, both Will and Angie are still trying to deal with the scars of their horrific childhoods.

Will Trent has quickly become one of our favorite shows! Since it's on cable and only airs once a week, my husband is constantly asking me, "Is there a new Will Trent up yet?" We enjoy many crime shows, though we like best those that come with a sense of humor (like Poker Face and The Rookie), and this one meets that criteria. It's also well-written and features twisty new mysteries and fast-paced action in each episode. What makes this show unique, though, are the original characters and the wonderful actors who play them. Despite Will often annoying his colleagues, viewers will quickly come to like him. Details from Will's and Angie's background slowly come to light that help to explain where they are now. It's an all-around outstanding show, and we look forward to each new episode!

Will Trent is an ABC show and is available on cable On Demand, on the ABC website (free), and on Hulu.


 

Thursday, March 09, 2023

Pacing & Management Guides for ME/CFS and Long-COVID


#MEAction is a great advocacy organization for ME/CFS and Long-COVID that offers a wide range of support and services for patients.

One of their recent projects was developing Pacing and Management Guides for ME/CFS and Long-COVID, with input from patients and medical experts. They have published two guides that are perfect for sharing with doctors and other medical professionals, physical therapists, and schools:

Pacing and Management Guide for ME/CFS and Long-COVID (for all patients)

Pacing and Management Guide for Pediatric ME/CFS and Long-COVID

Both guides provide a medical overview of what ME/CFS and Long-COVID are, a detailed explanation of post-exertional malaise (PEM) and how it limits patients, why exercise and Graded Exercise Therapy (GET) are harmful, tips on pacing, and resources. The pediatric guide would have been SO helpful in thr many battles we fought with our sons' schools to get them appropriate accomodations.

So, check these out, print them, and share them with any medical professionals (or school personnel) you or your child interact with.

Are these guides something that you will find helpful?

How could you use something like this?

Friday, March 03, 2023

Correcting Sleep Dysfunction in ME/CFS and Long-COVID


(This article was originally published on the ProHealth website on September 18, 2019.)

Sleep problems are one of the most common symptoms of ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome). Sleep dysfunction is a critical piece of the complex puzzle that is chronic fatigue syndrome, and ME/CFS and long-COVID patients are eager for treatments that will help to improve and normalize their sleep. When I was diagnosed with ME/CFS by my primary care physician, she said, “The first thing to do is to correct your sleep problems. That will make all of your other chronic fatigue syndrome symptoms improve.” She was right! Here are ways to help you fall asleep faster, sleep better, and wake up feeling refreshed.

 

Normal, Healthy Sleep

In order to treat ME/CFS sleep dysfunction, it helps to understand what healthy sleep looks like. A night of refreshing sleep consists of sleep cycles, moving through various stages in a predictable pattern: 

  • Stage 1 and 2 sleep (light stages of sleep)
  • Stage 3 and 4 sleep (deeper stages of sleep)
  • REM (Rapid Eye Movement) when we dream. 

 

Those deep Stages 3 and 4 are especially important for immune health, endocrine (hormone) function, and energy; it’s when our bodies recover and rebuild.

 

A healthy endocrine system, which produces hormones at the right times and in the right amounts, helps regulate sleep (and everything else), as follows:

  • A hormone called tryptophan is converted into 5-hydroxytryptophan (5-HTP), with the help of vitamins and minerals including iron, magnesium, calcium, B6, and folic acid.
  • 5-HTP is then converted into serotonin, with the help of magnesium, zinc, vitamin B6, and vitamin C.
  • Serotonin has many important functions in the body, including regulating mood and ensuring good quality sleep by converting into melatonin.
  • Melatonin directly regulates wakefulness and sleep. A healthy body naturally makes more melatonin at night, when it gets dark, and less during the day when it is light.

Note that melatonin and cortisol work together to regulate the sleep-wake cycle. In a healthy body, daylight triggers the body to stop producing melatonin and increase cortisol. Throughout the day, cortisol gradually declines, and darkness triggers the body to start producing melatonin and stop producing cortisol. Many studies have shown that most ME/CFS and long-COVID patients have low cortisol levels all the time. Luckily, the reverse is also true: that correcting sleep dysfunction can also help to normalize cortisol levels.

 

Sleep Dysfunction in ME/CFS

Why do ME/CFS patients feel like we are half-awake all night and still exhausted in the morning? Traditional sleep studies comparing ME/CFS patients to healthy controls often find no measureable differences in our sleep cycles, though some show reduced total sleep time and sleep efficiency. Newer studies, using entirely different ways of measuring sleep, though, are finding that ME/CFS patients have more disruptions in REM sleep and deep stage (3 & 4) sleep. Our brains will sometimes jump right from REM or even deep stage sleep into being awake or in light Stage 1 sleep, instead of cycling through each stage, as is normal. These REM disruptions in the studies correlated with worse symptoms the next day.

 

The hormone side is also not entirely clear. The few studies of serotonin levels in ME/CFS patients have shown contradictory results, though some do show abnormal serotonin function, indicating our bodies aren’t controlling serotonin the way a healthy body should. This matters because sleep deprivation causes a multitude of serious health problems, worsening every aspect of ME/CFS.

 

Sleep Studies

When an ME/CFS patient mentions sleep problems, doctors usually send him/her for a sleep study. The problem is, as noted above, that even carefully controlled scientific studies often fail to show abnormalities in our sleep using standard measures. Sleep studies do have an important function, though. They are designed to diagnose primary sleep disorders, like sleep apnea, restless legs syndrome, and narcolepsy. Plenty of ME/CFS patients also have a sleep disorder (some studies indicate we have a greater risk of primary sleep disorders), and it’s important to diagnose and treat those. Consider a sleep study to diagnose or rule out a primary sleep disorder but don’t expect it to find much with respect to your ME/CFS sleep dysfunction.

 

Treatments for ME/CFS Sleep Dysfunction

The key to correcting our sleep dysfunction at its source is to target those hormones that are responsible for good quality sleep. This is different than taking sedatives to knock you out; it means actually correcting the problem so that your sleep feels normal and natural and you wake up feeling refreshed. There are different approaches to try, and it often takes some trial and error, sometimes combining treatments, to find what works best for you. Work with a doctor to find the right combination and to prevent increasing serotonin too much.

  • Melatonin. You can directly supplement with melatonin, which is readily available in any drugstore, at bedtime. Most use 3-5 mg of melatonin, but you can start low, with just 1 mg, and go up, as needed, as high as 8-10 mg. Most patients find melatonin slightly helpful, but it rarely completely corrects sleep dysfunction. Note that regular melatonin helps you fall asleep but quickly wears off, so it won't help you stay asleep. Extended release melatonin can help with both falling asleep and staying asleep.
  • Tricyclic Antidepressants (TCAs). Most antidepressants work by affecting levels of serotonin, and this class of TCAs, which increase serotonin, are particularly sedating for most people, especially nortriptyline and amitriptyline. TCAs also increase epinephrine (a hormone which affects pain threshold), so they can also be helpful for pain. Use a lower dose for sleep dysfunction than would normally be used for depression, and take it 30 min–2 hours before bed. Nortriptyline comes in a liquid, so it can be started at tiny doses and very gradually increased. A study of ME/CFS patients taking 60 mg of nortriptyline at bedtime showed improved symptoms (but start lower).
  • Trazodone. A favorite choice of most ME/CFS experts for treating sleep dysfunction, trazodone is also an antidepressant that increases serotonin but in a different class than TCAs. One study of 66 fibromyalgia patients concluded that “trazodone markedly improved sleep quality.” It is known to increase stage 3 and 4 deep sleep, and it is the least likely sleep treatment to lose its effectiveness over time. However, about 20% of the fibro patients tested experienced tachycardia (racing heart rate). If that happens to you, try reducing the dose or try something else. TCAs and trazodone also block acetylcholine, another hormone, which can cause dry mouth or eyes, digestive problems, and other issues with long-term use. Of the three, amitriptyline has the most anticholinergic effect, nortriptyline less, and trazodone the least of the three. Most start with 25 mg trazodone for sleep and go up, as needed, to 50-200 mg. All doctors should be familiar with using TCAs and trazodone to help with sleep, as these are older, very common medications.
  • Tryptophan. Alternatively, you can move further up the hormone chain to increase tryptophan (which converts to 5-HTP and then to serotonin). Although tryptophan is found in some foods, most of those are protein-rich, and both tryptophan and serotonin drop after eating protein.  So, experts suggest taking tryptophan supplements instead, along with a carb-heavy snack or get your tryptophan from more carb-rich foods, like asparagus, leafy greens, soybeans, sea vegetables, cauliflower, and sunflower or sesame seeds. For supplements, start with 200-500 mg and work up – as needed – to 1000-1500 mg, taken before bedtime. However, experts do not recommend supplementing with 5-HTP because it blocks other important neurotransmitters and thus will only be effective short-term and then will stop helping sleep and cause side effects. Don’t combine tryptophan with TCAs or trazodone; that would increase serotonin too much.
  • Adequate Nutrients. Whichever treatments you try, make sure you are getting the vitamins and minerals necessary for each of these hormones to convert effectively into the next (see Normal, Healthy Sleep above). This includes plenty of magnesium, which some people also find mildly sedating, so you can take it before sleep. Be sure to get a form of magnesium that is well-absorbed, like glycinate, malate, or l-threonate (which also helps with cognitive function). Common types of magnesium found in most drugstores, like oxide and citrate, are so poorly absorbed that they are used as laxatives!
  • Prescription Sedatives. Traditionally known as sleeping pills, sedatives are not the best choice for correcting sleep dysfunction. They help you fall asleep and stay asleep, but they will not improve the quality of your sleep. Older ones, like Valium, actually worsen your sleep quality, further disrupting the deep sleep stages. Newer choices, like Ambien, Lunesta, and Sonata, will not disturb sleep, but they also won’t improve it. They do have a place, though, as an occasional extra treatment, when more help is needed.
  • Over-the-Counter Sleep Aids. Antihistamines like Bendaryl (diphenhydramine), anything with a “PM” in the name, and other over-the-counter sleep aids are best used short-term only. Most use diphenhydramine as a sedative, but your body quickly gets used to it and then it won’t work as well. Additionally, it will not improve your sleep quality and has anticholinergic effects over time. These are best used for just for a few days at a time, when you need some extra help, especially if you need them for other reasons, like an allergy flare or temporary pain.

 

Our Experiences

My son and I both have ME/CFS, plus tick infections, but I listened to my doctor all those years ago and treated sleep dysfunction first. Once my son got sick, we did the same for him, and we have both been sleeping a solid 9-11 hours of good quality, normal-feeling sleep every night for over sixteen years … and waking up feeling refreshed most mornings.

 

I first tried amitriptyline at its lowest dose, but it left me groggy in the morning. Next, I tried nortriptyline liquid in tiny doses (and we started with that for my son) and gradually increased the dose as needed, until we each leveled out at an effective dose; then we switched to more convenient capsules. After a year or two, the nortriptyline wasn’t working quite as well, so we added trazodone, again starting low, at just 25 mg. We both ended up (he’s an adult now) at a combination of 50 mg nortriptyline and 100 mg trazodone (low doses compared to what is used for depression). 

 

We both also take timed-release melatonin supplements (3 mg for me and 5-10 mg for him), and I have a prescription for low-dose Ambien that I only use rarely, when I travel. We both also take plenty of magnesium (both malate and l-threonate) and the other nutrients listed above. Lab tests can help to show which nutrients you need more of and which you have plenty of; for instance, we are both very high in B6, so we don't supplement with it.

 

My doctor was right: correcting sleep dysfunction has helped to improve all of our symptoms. When combined with other treatment approaches, like treating orthostatic intolerance and immune dysfunction, my cortisol levels normalized, too.

 

You can read more about our own experiences using trial and error to find the right combination treatment in my earlier post on Correcting Sleep Dysfunction.

 

Sleep Hygiene

Although the sleep dysfunction of ME/CFS can’t be corrected just with standard guidelines for “sleep hygiene,” you do need to promote better sleep, in addition to whatever treatments you try. As one sleep expert explains, getting a good night’s sleep requires an intricate coordination of many different elements, including some of the basics:

  • Keep your room dark and cool. Studies show people sleep most soundly when their room is 60-67 degrees Fahrenheit (blankets are fine). Use room-darkening blinds, shades, or curtains.
  • Get plenty of daylight during the day. As soon as you wake up in the morning, open the curtains and get lots of natural light throughout the day--it tells your body to stop making melatonin and make more cortisol, making you more alert. That also helps when it gets dark, to tell your body it’s time to sleep.
  • No screens two hours before bedtime. Besides electronic devices being stimulating, blue light emitted from them tells your body to stop making melatonin. Try reading a print book, listening to an audio book, or just listening to relaxing music before bed. If you must use an electronic device in the evening, use bluelight-blocking glasses (cheaper or try these, top picks in testing) or screen protectors. I sometimes read with an e-reader before bed, but you can adjust the display for less blue light. On my iPad Mini, I go to Settings, then click on Display and Brightness. Click on Night Shift, and you can set a time period each day when the display will switch to less blue light. Mine is set for Night Shift from 9 pm to 7 am, and I have the "color temperature" all the way to More Warm (which is less blue light). These settings should work on any Apple device.
  • Wear warm socks. Research shows that warm feet helps you to fall asleep more easily and sleep more soundly. I tried wearing soft, warm socks for my naps and found that it works.
  • Naps are probably OK! One common sleep hygiene rule you should NOT follow is the advice to avoid daytime naps. That’s for healthy people, not us. Our bodies often don’t make enough energy to get through the whole day. It is far better to take a nap mid-day than to push yourself to stay awake until you are “wired and tired,” making it even harder to sleep at night. My after-lunch nap is an essential part of my day and allows me to function into early evening. My How to Nap video has lots of practical tips for getting effective, proactive rest before you crash.

 

Myalgic encephalomyelitis/chronic fatigue syndrome and long-COVID are a complex web of intricate causes and effects, involving every system in the body. When sleep is disrupted, problems in the endocrine, immune, and nervous systems occur, worsening all ME/CFS symptoms in a vicious cycle. Similarly, when you treat sleep problems in ME/CFS, there will be improvements in all of these systems, leading to improved symptoms. Best of all, improving those systems will lead to even better quality sleep, in a positive domino effect. The best treatment approaches not only help you fall asleep and stay asleep but improve the quality of your sleep so that you wake up feeling refreshed and ready for a new day.

 

Suzan Jackson is a freelance writer who has had ME/CFS since 2002 and also has Lyme disease. Both of her sons also got ME/CFS, in 2004 at ages 6 and 10, but one is now fully recovered after 10 years of mild illness and the other is living on his own and working, with ME/CFS plus three tick-borne infections. She writes two blogs, Living with ME/CFS at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com, and wrote the book, Finding a New Normal: Living with Chronic Illness, available everywhere. You can follow her on Twitter at @livewithmecfs.

 

References

 

Trazodone (Desyrel) Is.” Phoenix Rising website.

 

Alban, D, Alban P. “Use Tryptophan to Boost Serotonin for Better Mental Health.” Be Brain Fit website (April 3, 2019).

 

Bell, D. “Sleep in CFS.” Lyndonville News (January 2005) 2(1).

 

Castro-Marrero, J, Sáez‐Francàs, N, et al. “Treatment and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: All Roads Lead to Rome.” British Journal of Pharmacology (March 2017) 174(5), pp. 345-369.

 

Cleare, A. “The Neuroendocrinology of Chronic Fatigue Syndrome.” Endocrine Reviews (April 1, 2003) 24(2), pp. 236-252.

 

Field, T, Hernandez-Reif, M. et al. “Cortisol Decreases and Serotonin and Dopamine Increase Following Massage Therapy.” International Journal of Neuroscience (July 7, 2009), pp. 1397-1413.

 

Jackson, ML, Bruck, D. “Sleep Abnormalities in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Review.” Journal of Clinical Sleep Medicine (December 15, 2012) 8(6), pp. 719-28.

 

Kishi, A. Presentation: “Sleep Disturbances in ME/CFS.” The National Academies of Science, Engineering & Medicine – Health and Medicine Division. May 5, 2014.

 

Kishi, A., Natelson, BH., et al. “Sleep-stage Dynamics in Patients with Chronic Fatigue Syndrome with or without Fibromyalgia.” Sleep (November 1, 2011) 34(11), pp. 1551-60.

 

Lapp, C. “Using Antidepressants to Treat Chronic Fatigue Syndrome.” CFIDS Chronicle (Summer 2001).

 

Morillas-Arques, P, Rodriguez-Lopez, CM, et al. “Trazodone for the treatment of fibromyalgia: an open-label, 12-week study.” BMC Musculoskeletal Disorders (Sep 10, 2010) 11, p. 204.

 

Rowe, PC, Underhill, RA, et al. “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: a Primer.” Frontiers in Pediatrics (June 19, 2017).

 

Yamamoto, S, Ouchi, Y, et al. “Reduction of Serotonin Transporters of Patients with Chronic Fatigue Syndrome.” NeuroReport (December 3, 2004) 15(17), pp. 2571-4.

 

Yavropoulou, Maria P, et al. "Protracted Stress-induced Hypocortisolemia May Account for the Clinical and Immune Manifestations of Long-COVID." Clinical Immunology (December 2022), p. 245.


Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

Thursday, February 23, 2023

Chronic Illness Vlog 2-21-23: A Week of Small Celebrations


I haven't posted a vlog since December, so I recorded one last week. My chronic illness vlogs are honest views of my life with ME/CFS and Lyme, shown through short video clips made over the course of a week.

Last week, I was feeling pretty good, with just a few low-energy days. Mostly, though, given the time of year, it was a week filled with joy due to celebrations of smaller holidays: Superbowl (just before I recorded this), Valentine's Day, and Mardi Gras. You can check out my video, Celebrate Everything, Big and Small, for my tips on adding joy to your life by celebrating the small stuff, with minimal effort and energy!

This vlog also includes some peaceful, calming video outdoors in nature.

You can watch last week's vlog on YouTube or below:


So, how was YOUR week last week? Do you have traditions for small celebrations?

Share your thoughts in the comments below.

Monday, February 20, 2023

Movie Monday: CODA

As usual, we're a bit behind, but my husband and I finally watched the movie CODA last week. In 2021, it won Oscars for Best Motion Picture, Best Adapted Screenplay, and Best Supporting Actor (for Troy Katsur). Now we know what all the fuss was about! We both loved this funny, uplifting movie about a family of deaf fishermen in New England.

As a Child of Deaf Adults (CODA), Ruby, played by Emilia Jones, is the only hearing person in her deaf family. They live on the New England coast and make their living fishing. Early every morning, Ruby heads out in their boat with her father, played by Troy Katsur, and her older brother, Leo (played by Daniel Durant), before she heads into town for high school. For as long as she can remember, Ruby has been the interpreter for her father, brother, and mother, played by Marlee Matlin. Her family is quite isolated from the rest of the town, though they are very close-knit and loving. In her senior year of high school, Ruby signs up for choir on a whim. She has always loved to sing, but in the midst of her deaf family, she has no idea if she's any good. The music teacher, Bernardo Villalobos, played by Eugenio Derbez, immediately recognizes Ruby's raw talent. He begins training both her and Miles, played by Ferdia Walsh-Peelo from Sing Street, another excellent movie), for their upcoming concert, as well as for an audition at the prestigious Berklee School of Music. He's convinced Ruby can get in, and the more she sings, the more passionate she becomes about it. But her family needs her more than ever, with several crises occurring in the local fishing community. Ruby is torn between following her dreams and finally becoming her own person and caring for the family she loves.

When I thought back to this movie, I realized it's a familiar coming-of-age movie theme: the adolescent finding her identity and learning to separate from her family. The setting, of course, is quite original: a hearing child in the midst of a deaf family who rely on her. That's not all that makes this movie special, though. The entire cast is outstanding, and glimpsing the interior lives of a deaf family is fascinating, especially in one scene completely from their perspective, with complete silence in the midst of a crowd. The writing is also excellent (and award-winning), with each character fully developed and plenty of humor blended with the drama. Even the physical setting, on the rocky coast in a fishing village, is beautiful and unique. All together, this makes for an engrossing package: a moving, inspiring, funny family drama that kept us rapt and left our hearts soaring.

CODA is an Apple original movie and is available on Apple TV.


If you are looking for other warm, inspiring, funny family dramas, try:

Captain Fantastic - warm, funny story of quirky family facing challenges

Lady Bird - tender, realistic, funny coming-of-age story

The Peanut Butter Falcon - Original, heartwarming & funny, about found family.

Grandma - warm, funny, heartbreaking movie about eccentric grandma & her granddaughter 

This is Where I Leave You – warm, hilarious adaptation of the novel
 

Thursday, February 16, 2023

Throwback Thursday: 17 Years of Blogging!


Seventeen years ago today, two wonderful things happened: my amazing nephew was born and I started this chronic illness blog! Back then, ME/CFS was often known as CFIDS (chronic fatigue immune dysfunction syndrome), in an effort by patients, experts, and advocates to bring some legitimacy to our much-maligned disease and more accuracy to its name.

You can read my very first blog post, Our Approach to Living with Chronic Illness, at the link. It's interesting to me to see that my overall philosophies have not changed: a balance of acceptance and hope, finding small joys in everyday life, staying within our limits, plus finding treatments that help. You can even see the origin of the title of my book, Finding a New Normal: Living Your Best Life with Chronic Illness in this post!

I started the blog as a sort of online journal (you can also see the precursor to this blog on my original LiveJournal account!). I didn't expect much, but I wanted to share our story and hopefully connect with a few other patients. I was quickly stunned by the outpouring of support from patients around the world who shared so many of our experiences in their own lives. 

It was the start of what turned into a huge effort to provide support to others (while also supporting myself and my family) that now includes multiple support groups, both locally and globally, online; a YouTube channel; and interaction with others patients on social media platforms and beyond.

All of this has greatly improved my life in so many ways. This illness can be so lonely and isolating, and it's been magnificent to connect with so many people all over the world.

Where were YOU 17 years ago today?

Tuesday, February 14, 2023

TV Tuesday: Poker Face

My husband and I have a new favorite TV show that we are absolutely loving. Poker Face stars one of our favorite actresses and is suspenseful, funny, and just plain fun.

The fabulous Natasha Lyonne (from Orange is the New Black and Russian Doll, two other outstanding shows) stars as Charlie Cale, a woman with an unusual talent: she can tell when someone is lying. For awhile, Charlie made money playing poker, but she became renowned (or rather, infamous) rather quickly and was soon banned from high-roller poker games after winning too much money. As the show opens, Charlie is living a quiet life working in a small, family-run casino. No more poker for her; she's just earning her living as a waitress in the casino and living in a trailer. When a friend of hers turns up dead, and Charlie can tell someone involved is lying about it, she gets involved in finding out what really happened. Meanwhile, the casino's manager, played by Adrian Brody, wants Charlie to use her poker/truth-telling talents for his own gain, to watch a high-roller game being held at the casino and help his plant win. Let's just say that things go very wrong along the way. By the end of the first episode, Charlie is on the run, with the casino's muscle, Cliff (played by Benjamin Bratt), chasing her. From then on, each episode finds Charlie in some small out-of-the-way place, with a new job, just trying to live a quiet, peaceful life. In each place, though, she stumbles on another murder and feels compelled to make sure the bad guys pay and the good guys are redeemed.

This is something of a classic murder mystery show, with a twist. Charlie usually ends up solving each crime the old-fashioned way, by talking to people and finding clues, but there is often some sort of innocuous comment someone makes that Charlie knows is a lie and makes her realize there was a murder (versus an accident or natural death) in the first place. The mysteries are twisty and unusual. The best part of this show, though, is its star. If you've seen Natasha Lyonne in either of her previous big shows, you know she steals the scene every time. She's an absolute delight to watch on screen, and here, she is at her laid-back, snarky best. It's easy to root for her. Plus, each episode has some big name guest stars in fabulous roles, like Judith Light as an aging hippy in a retirement home and Ellen Barkin as a washed up actress who wants one last hit on-stage in a regional theater. Every episode is loaded with clever humor, great writing and acting, and a fun mystery to get to the bottom of. We very quickly caught up on the first six episodes and are anxiously awaiting the next one!

Poker Face is a Peacock original series and is available on Peacock exclusively, airing on Thursdays.


Friday, February 10, 2023

Extensive Evidence That GET & CBT Are Harmful to ME/CFS and Long-COVID Patients


That headline should be nothing new to the large and growing population of patients with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and long-COVID, also known as PASC (post-acutes equelae of COVID-19). But, unfortunately, far too many doctors and other medical professionals worldwide continue to urge their ME/CFS and long-COVID patients to exercise and/or prescribe traditional physical therapy, in spite of evidence that these practices are often harmful to these populations.

Now, there is a single scientific paper that pulls all that evidence into one short summary: Treatment Harms to Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, published in Advances in Bioengineering and Biomedical Science Research in January 2023.

This paper references nine different research studies or scientific papers previously published that all come to the same conclusion: that forcing patients with ME/CFS or long-COVID (PASC) to exercise makes them worse, and that it is unethical for doctors to choose any treatment path that could be harmful.

Just the fact that this many previous studies and papers have been published--and, as the author points out, as a result, the UK's NHS revised its NICE guidelines in 2020 to reflect these findings--should mean that doctors are no longer causing harm to their patients in these ways. Unfortunately, that's not the case, and doctors all over the world continue to urge their ME/CFS and long-COVID patients to be more active, exercise, and are even still prescribing traditional physical therapy.

So, if you have encountered one of these misinformed medical professionals who still insists on recommending increased activity, exercise, GET (Graded Exercise Therapy), or traditional physical therapy, click that link above, print the brief paper, and share it with him or her. The best way for us to help change these outdated and harmful practices is to help spread the word.

And once you've educated your doctor that exercise and GET are harmful, help him or her to understand how they can help you with real medical treatments instead. My Effective Treatments for ME/CFS (and Long-COVID) summary is a great place to start. The treatments that have helped my sons and I the most are almost all inexpensive and readily available through any primary care doctor/general practitioner (and there are even some treatments you can try on your own, though it's always best to do so under a doctor's supervision).

I've also written some articles on treating ME/CFS and long-COVID that are perfect for sharing with medical professionals because they are brief and include scientific references at the end (and are written so you can understand, too)--and these are the best treatments to start with, for maximum benefit:

Correcting Sleep Dysfunction in ME/CFS

Treating Orthostatic Intolerance/Dysautonomia in ME/CFS (including POTS)

The best part? If you start by treating Orthostatic Intolerance (OI) effectively, then you often can begin to tolerate increases in activity and small bits of exercise, at your own pace while listening to your body and wearing a heart rate monitor. But you need to treat the underlying causes of exercise intolerance (including OI) first.

Help spread the word! Print a copy of this new paper to share with your own medical professionals!

Monday, February 06, 2023

Movie Monday: A Man Called Otto

This weekend, my husband and I enjoyed a staycation, including a rare trip to the movie theater! We saw A Man Called Otto, based on the novel A Man Called Ove by Fredrik Backman. I read (and loved) the novel, my husband didn't read it, and we both thoroughly enjoyed this warm, poignant, very funny movie adaptation.

Otto, played by Tom Hanks, is a grumpy older man who lives in a townhouse community, located in Pennsylvania. He's been forced to retire from a job he loved, and Otto is someone who needs to feel useful. Each morning, he "does his rounds" of the neighborhood, checking that everyone is parked where they should be, that the recyclables are properly sorted, and that everyone is following the rules. But Otto has a secret. With his wife and his job both gone now, Otto has no reason to keep living. He's determined to end his life on his own terms. Early in the movie, he calls to cancel his electric, gas, and phone services to leave no loose ends. But life has other plans. New neighbors move into the neighborhood, a Mexican-American family. Marisol, played by Mariana Travino, is hugely pregnant; her husband, Tommy (played by Manuel Garcia-Rulfo), is a nitwit in Otto's eyes. And they have two adorable little girls. This family plies Otto with kindness, requests for help, and delicious food. Throughout the movie, flashbacks in Otto's memory help to fill in the blanks about how he came to be where he is now. With the help of several crises, Otto's icy exterior gradually thaws a bit, and he finds a reason to live.

Like the novel it's adapted from, this movie is hilariously funny, while also including some dark, difficult emotions (it does, after all, include several suicide attempts). Tom Hanks, of course, does a wonderful job of bringing the curmudgeonly Otto to life on screen, and Mariana Travino is excellent as the warm, persistent Marisol. It's a faithful adaptation of the book, following the plot pretty closely, with the exception of Ove becoming Otto and being located in the US instead of Sweden (though there's a nod to Otto's Swedish heritage in the movie). My husband and I both laughed a lot and teared up at the end and had a thoroughly enjoyable afternoon at the movies.


Thursday, February 02, 2023

Donate While You Shop: New Changes!


Amazon made a surprising announcement recently: as of February 20, they will be discontinuing their long-running AmazonSmile initiative. AmazonSmile allowed customers to select their own charity and then donated 0.5% of every purchase made to that charity. According to my latest update in December, Amazon sent a check to Solve ME/CFS (my selected charity on the site) for the last quarter of 2022 for $1367, and over the lifetime of the program had sent $24,159. As you can see, that's a substantial donation! However, Amazon said the program wasn't "having the impact we'd hoped." 

While this is a disappointing move from the world's top online seller, there are still other ways to donate to your chosen charity while shopping (which doesn't cost you anything extra):

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. Just register on each site and choose you charity. You can also earn by using the sites to search. To show you how well this works, my iGive page currently shows that I have selected Solve ME/CFS as my cause, that I have personally earned and donated $296.31 to them, and that they have earned a total of $6583.88 from all supporters! Isn't that amazing? Over $6500 just from clicking a button before we shop online.

I'm hoping that perhaps Amazon will sign up for one of these programs, but that remains to be seen.

For a list of great ME/CFS charities and more ways to support them, check out my Giving Tuesday post from November.

Saturday, January 28, 2023

2022 in Review: My Worst Year in 20 Years of Chronic Illness


I know that title sounds like an exaggeration, but unfortunately, it isn't. When I recently looked back at 2022, I discovered that it was my worst year since I first got ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) in 2002 (and later, Lyme disease in 2007). I had two major relapses last year, one due to COVID and another due to long overdue (unfortunately necessary) medication changes. I have now crawled back up from those low points and have been feeling mostly well the past two weeks, so I'm ready to share what treatments helped ... just in time for a year-end review!

NOTE: I like data and am an analytical person. For details on how I simply track how I feel on a calendar, check out my post, My Progress in 2020 and Goals for 2021 and scroll down to My Health in 2020 and below that, the section called "How Do I Know This?" I use a 1 to 5 rating, where 1 is good and 5 is mostly bedridden. I also rate my exertion each day on a 1 to 5 scale. And for details on the process I use for goals, which focuses on taking small steps forward toward what I want in my life, see my recent video, Setting Goals When Chronically Ill (Improve Your Life in Tiny Steps).

 

2022 in Review

The data:

Average How I Felt = 2.9 (1 is good; 5 is bad)

  • The lowest since 2004.
  • 14% worse than in 2021. 
  • 21% worse than 2019, my last good year, before all these relapses began.

Average % crashed = 26% (meaning I was couchbound/bedridden 26% of the time)

  • Crashed = a 4 or 5 on my scale, unable to function.
  • My lowest ever, in 20 years.
  • Includes my worst month ever, September 2022 when I was crashed 77% of the time.
  • 13% worse than in 2021.
  • 21% worse than 2019.

Average exertion = 3.5 (on a scale of 1 to 5)

  • 6% worse than 2021.
  • 7% worse than my best year, in 2019, when I was able to do more than in any previous year since getting sick.
  • Clearly, I was still doing too much last year as my condition worsened!

 

2022 Timeline: Highs and Lows

I've included some notes into January 2023 so you can see the end of the story and my recovery (hopefully) back to my own "normal."

January 5 - I caught COVID from my father-in-law's nursing home (so did he and my son).

January - I was severely ill, mostly bedridden/couchbound for three weeks and then the COVID symptoms began to clear up, but my ME/CFS remained worse than usual. Overall in January, my average for how I felt was 3.8 (out of 5, where 5 is bad), and I was severely crashed 65% of the time.

February - April - I gradually improved, bit by bit, with the help of treatment changes.

May - July - Mostly at my normal baseline, with how I felt = 2.4 and only crashed an average of 4% of the time.

August - With my OB/GYN retiring at the end of the year, and my age (57), she finally took me off the 90-day birth control pills I had taken for decades to hold my hormone levels steady (for ME/CFS). As we had planned, blood tests showed I was completely through menopause. We both anticipated that the transition off hormones might be rough, but it was much, much worse than either of us expected!

September - my worst month ever, badly crashed (nonfunctional and couchbound/bedridden) 77% of the time.

October - After two months off the birth control pills, I still had daily headaches, very low energy and stamina, and constant flu-like aches (an indication of immune system activation). The hormone shift had affected everything. My OB/GYN started me on low-dose estrogen patches, with a low dose of progesterone every 3 months for two weeks.

November - The headaches immediately cleared up, and my energy slowly returned. The aches hung on, so my ME/CFS specialist tried another dose of steroids for 5 days (which had helped me finally get back to normal in April).

December - Additional testing showed that the hormonal shifts had messed up all of my hormones (and the endocrine (aka hormone) system is closely tied to the immune and nervous systems). My ME/CFS specialist added a very low dose of testosterone and asked me to wait another month for things to stabilize before adjusting my thyroid meds.

January 2023 - With a family funeral to attend in early January (another rough start to the new year), I asked my primary care doctor to look over my latest labs and adjust my thyroid meds. Every single one of the 8 or so thyroid tests had come back low! She added a second thyroid medication. I managed the very long travel days to and from Texas and the funeral. The week that we came back (last week) was the best week I've had in six months!

LAST-MINUTE UPDATE: I've had trouble with the latest brand of estrogen patches my pharmacy sent me; they often fall off within 2-5 days (they're supposed to last 7 days), and I don't always notice right away. When I go without it, I crash badly. One fell off this week and I ran out of testosterone. I slept most of Tuesday and spent most of Wednesday in bed, badly crashed. With a new patch securely applied and back on testosterone, I am feeling better again, though I am still sleeping more than usual and have low energy the past two days. (My son has a cold, so this might also be my reaction to being exposed to a virus.)


What Helped Me

Post-COVID:

See my previous Relapses and Recoveries post for the treatment changes that helped me recover from the post-COVID relapse at the start of the year. There's a long list there of things that helped me.

Endocrine System/Hormones:

The endocrine system produces hormones that regulate everything in the body, including the immune system, the nervous system, heart rate, blood pressure, energy, temperature regulation--everything. When I stopped taking the combination of estrogen and progesterone I'd been on for decades, it threw everything off, not just the things regulated by those two hormones. It was a domino effect that sent me into my worst relapse ever.

So, my doctors helped me with estrogen, progesterone, and testosterone, based on my lab tests, but my thyroid function (which is normally a bit underactive) was also thrown off and needed to be tested and treated. 

Thyroid dysfunction is very common in ME/CFS (again, that domino effect - all systems in the body are connected and affect each other), but it's critical to get the right tests. To be thorough and look at all measures of thyroid function, ask your doctor to test:

  • TSH
  • Thyroxine (T4)
  • T3 Uptake
  • Free Thyroxine Index
  • Triiodothyronine (T3)
  • T4, direct
  • Reverse T3, serum
  • T3, free
(Note that the first 5 tests listed here are all included in Labcorp's Thyroid Profile II)

Many doctors will only test for one or two of these things, but it's important to get the full panel of thyroid tests. My hypothyroid was missed at first because of not getting all the tests. In my last round of tests in December, ALL of those tests were low, except T3, which was already being treated.

Once we had the results, my doctor worked with me to find the right combination of meds. For me that was 10 mcg liothyronine (which increases T3 only and I'd already been on for two years), with 30 mg Armour Thyroid added last month to bring the rest up. We're still in the experimentation phase; I'll go back for another round of tests in a few weeks to see how this combination is working.

Immune Dysfunction
 
As always with ME/CFS, immune dysfunction was at the heart of both of my relapses last year. The first was triggered by COVID, which led to my immune system staying in over-activated "fight" mode for months. The second relapse was triggered by hormone changes, but those affected the immune system, and I was back to the constant flu-like aches that tell me my immune system is in overdrive (other common symptoms of immune activation include sore throats, swollen glands, and/or feeling feverish, even if you don't have a fever).

Again, refer to my Relapses and Recoveries post from mid-2022 for details on how I treated immune system activation. 

Interestingly, with that relapse at the start of the year, increasing my dose of inosine (an inexpensive immune modulator, sold as a supplement) helped me recover. But this time, with the more severe relapse in the second half of the year, it turned out that stopping inosine and taking a break from it helped me. This is not as crazy as it sounds. With immune modulators (that help to normalize the immune system, rather than suppressing it or boosting it), you must constantly change the dose in order to keep them effective. I had done that with inosine for the past 10 years or so, alternating high-dose weeks and low-dose weeks and occasionally taking a two-week break. But I think that this time, with my immune system so overactive, even the inosine was too much for it, and stopping it completely helped. It's a treatment that has helped me (and my son) tremendously over the years, so I will keep it in mind to use again.

Finally, as in April, another short round of steroids (just 5 days of prednisone) helped to temporarily suppress my immune system, giving it a chance to sort of reboot and come back to normal (well, as close to normal as my immune system gets). You can read more details about using steroids short-term like this in my Relapses and Recoveries post (it is never a good idea to use steroids long-term with ME/CFS, since parts of our immune system are under-active). Also note that I tried a 5-day round of prednisone in September, when I was at my worst, but it had no effect. I needed to first treat all the different hormone issues and get back to a somewhat balanced endrocrine system, and then the steroids helped.

So, that was my 2022. I hope that 2023 will be much better!

How was last year for you?
 
What treatments help you?
 
Share your experiences (or any questions) in the comments below.

 

Wednesday, January 18, 2023

Setting Goals When Chronically Ill: Improve Your Life in Tiny Steps


I was absent the past week due to a family funeral. Our brother-in-law died unexpectedly on January 1, so my husband and I quickly made plans to travel to Texas for the memorial service last weekend. I had no intention of flying anytime soon, but San Antonio is about a 5-day drive from here! Of course, I wore my mask the entire long day of airports and planes (and also most of the weekend). I also, for the first time ever, requested wheelchair assistance from the airline, and wow, what a difference! It helped so much, and all the people who helped me were so kind. If you've never requested it before and need to travel, definitely give it a try. It prevented bad over-exertion crashes so that I could enjoy time with our nephews and their families and recover quickly once back home.

While I catch up here and get back into a more normal routine, I wanted to share this video I posted just before our trip. It's called Setting Goals When Chronically Ill: Improve Your Life in Tiny Steps. It describes a process I have used for many years, with loads of simple tips and strategies to help you meet your goals, change habits, and improve your life--all in ways that are doable even in lives severely limited by chronic illness, even if your only goal is to be happier and find more joy in your life. You can watch the video on Youtube or I will include it below: 


I would love to hear how you are starting the new year, and any advice you have for setting goals and making improvements when you are chronically ill. You can leave comments below or connect with me on Twitter or on this blog's Facebook page.

Happy New Year!

Monday, January 09, 2023

Favorite Movies Watched in 2022


I reviewed just 9 movies in 2022, in part because there is so much great TV to watch now. However, if I took the time to review a movie, it was because I really enjoyed it, so any movies on my 2022 list are worth watching, not just my top picks.

The TV icon in the image above is still mostly accurate, as we once again watched just one movie in a theater last year because my health was so poor most of the year. I'm hoping to get out to the recliner theaters a little bit more in 2023!

As in years past, you can see my full list of movies reviewed this year further down, and my top picks in each genre just below. To see all of the movies I have reviewed on my blog (a considerable list), check out the Movies tab, where they are listed by genre, though it's getting harder to categorize a movie into just one genre as there's so much cross-over now. Links go to my reviews, with a trailer. Note that where each movie is available might have changed over the years, since I first reviewed it, so double-check to see where you can watch it now.

Best of the Best Movies Watched in 2022:

Best Action/Suspense/Thriller 

Parasite

clever, funny, family drama that turns into a suspenseful thriller 

(Oscar winner: Best Picture)



Best Drama

Where the Crawdads Sing

Murder mystery/legal drama/love story/coming-of-age story set against a gorgeous natural backdrop


 

 Best Comedy 

Licorice Pizza

nostalgic coming-of-age comedy/drama set ion 1970's L.A. 

(nominated for Best Picture)



Best Sci-Fi

The Adam Project  

heartwarming, funny, action-packed sci fi adventure 



All Movies Reviewed in 2022:

I only review movies I really like, so all of these are worth watching:

Action/Suspense/Thriller

Glass Onion - fun, eye-popping, suspenseful mystery with an all-star cast

Parasite - clever, funny, family drama that turns into a suspenseful thriller (winner: Best Picture)


Drama

Honey Boy - entertaining & moving film about a dysfunctional Hollywood childhood

The Power of the Dog - tense Western drama with emotional complexity (nominated for Best Picture)

Where the Crawdads Sing - Murder mystery/legal drama/love story/coming-of-age story set against a gorgeous natural backdrop


Comedy

Licorice Pizza - nostalgic coming-of-age comedy/drama set ion 1970's L.A. (nominated for Best Picture)

The Lost City - a light, fun adventure-romance


Sci Fi

The Adam Project - heartwarming, funny, action-packed sci fi adventure

Finch - warm, funny, suspenseful drama set in a post-apocalyptic world