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


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.



mark kent said...

i have both m.e . and fibromagyia .very bad migraines PAIN TOO BAD I AM, VOMITING.MARK

Sue Jackson said...

Sorry to hear you are struggling, Mark. Have you tried any treatments yet for your migraines? There are some really great medications on the market now, including some that work in entirely new ways and are very effective.

I hope you get some relief -


Michelle said...

My friend, I love to read and understand the analytics and diagnosis of this disease. There is not a day that goes by that I wish you good health and happiness. I cannot imagine the determination and tenacity it takes to live with this every day. I thank you for the education you bring to the forefront. You are a strong leader, educator and best friend forever. 💜

Sue Jackson said...

Michelle -

And you are the best friend I could ever want!! Thanks for taking the time to read this and for wanting to better understand. That means SO much to me. I love you and miss you! When's the next season of Amazing Race??


Carrie Kellenberger said...

Hi Sue,

Sheryl has mentioned you several times so I've been trying to keep better tabs on your content. Your post on Twitter caught my eye as 2022 was also my worst year for illness and I wrote a similar post. I made a note before I went to bed last night to check in today to read your full article and will be better at checking in and getting to know you and your advocacy work in 2023.

I have fibro and ME diagnoses (which we think started from EBV) and I also have axSpA. (Just to give you some context.) In Taiwan, there isn't any help for ME patients and fibro is slowly starting to be taken more seriously.

All the best to you,

Sue Jackson said...

Hi, Carrie!

My laptop is back up and running!!

So very sorry to hear your 2022 was so awful, too. I'll have to check out your post - leave a link, please! Ans so sorry you live somewhere with so little support - though honestly, most of us all over the world are in the same boat, unfortunateky - we all need more medical support!

Luckily, over the past 20 years, I've been able to find quite a few treatments that have helped my sons and I. Check out my Effective Treatments page, as a good starting point. Many of the best treatments are inexpensive and readily accessible, through just a primary care doctor/GP or even on your own:

Thanks for taking the time to leave a comment!


Avi said...

Hi Sue,

I just wanted to say thank you so much for your blog! I have long covid and was recently diagnosed with me/cfs, but your blog gives me hope that with the right strategies and medications, I can lead a full life :)

Sue Jackson said...

Thanks for the kind words, Avi. I'm so sorry to hear you've been hit with long-COVID/ME/CFS. Very glad that my blog is giving you some hope. Check out the Treatments tab at the top - it's an overview of most of the treatments that have helped us over the years. Most doctors do not know how to treat ME/CFS, but if you find a doctor who is willing to listen and learn alongside you, there are a lot of things you can try.