Progress: Bedbound to baking and birding
TL; DR:
I’ve recovered from bedbound in the dark at my worst to conservatively 65% function, rounding the corner to 70% shortly.
The major pieces of my recovery:
- Reducing allostatic load
- Getting the right diagnoses and starting appropriate treatments
- An incredibly supportive partner
- A supportive workplace and remote work
- Financial privilege
- Taking control of my own recovery
- Getting off of doomer subreddits and forums
- A refusal to stop trying and believing that improvement was possible even if remission wasn’t (I now believe remission is possible and that I’ll get there)
- Recovery stories
- Limbic retraining/nervous system work
——————
The (very) long version:
Diagnoses:
- Long Covid
- Migraine
- ME/CFS (yes, including PEM)
- MCAS
- POTS
- Fibromyalgia*
- Binocular vision dysfunction
- Graves Disease
*I was diagnosed during a horrible MCAS and ME/CFS flare. I don’t think I actually have fibro, but that the pain caused by MCAS and ME/CFS confounded diagnosis
Timeline
- 2008
- Mono followed by several months of post-viral fatigue
- 2017/2018
- The flu, followed by 6+ months of (diagnosed) post-viral fatigue
- In retrospect, I think this is when I developed ME/CFS that resolved to very mild after about 8 months of stopping all exercise. I would get PEM a few times a year, usually after a big bike ride
- 2020
- Covid infection
- A couple months later, diagnosed with Grave’s disease out of the blue; resolved with medication
- 2021
- Migraines increasing in frequency and severity but manageable
- 2022
- Had second booster, this time Moderna after only having Pfizer
- Sick in bed for a few days
- Migraines worsening to about half the days of the month
- Diagnosed with migraine and started on preventative and acute treatments
- Migraine severity and frequency continued to worsen
- Spend a month on medical leave (I’m not better at the end, I just ran out of sick time)
- 2023
- Health gets significantly worse
- Most of the summer is spent bedbound, in a dark room, unable to tolerate sound or screens
- Chronic daily migraine
- Start Ajovy, severity reduces but frequency not touched
- 2024
- Tentatively diagnosed with POTS and start treatment
- Switch to Qulipta, migraines reduce by about half
- Tentatively diagnosed with MCAS and start treatment
- Referred to long covid clinic, where I’m diagnosed with long Covid, POTS, MCAS, ME/CFS, fibromyalgia
- Have a horrible flare from about Dec 2024-April 2025
- Stabilize post-flare at about 35% function
- Have stopped doing almost all chores, cooking is the easiest possible (reheating, basically)
- Ordering delivery and ready-made meals
- Go multiple months without leaving the house
- Migraines start worsening, going from about 15 days a month back to daily and now with eye pain
- Diagnosed with binocular vision dysfunction and get prism glasses; migraines go back to baseline of about 15 per month, eye pain resolves
- I start exploring nervous system work and see little progress
- Fall 2025
- Overnight improvement to about 50%
- I find the nervous system work that *clicks* for me
- I use this new exercise (paired with a deep understanding of the neuroscience) to stop a post-shower POTS flare in its tracks, then get an 8/10 migraine to a 0 in minutes, a few days later
- Over the next few months my migraines go from 2-3 a week to 1-2 a month (that menstrual migraine just won’t quit), my function and capacity keep improving, I have one mild PEM event that resolved in a day
- Overnight improvement to about 50%
- 2026
- After 6 years, I get Covid again (getting a blood test while masked. Ugh!)
- I double down on my nervous system work while sick, including choosing to believe in the best possible outcome, and come out of Covid with higher function than I went in
- I stop monitoring myself so much—take off the smart watch, stop logging symptoms
- I make consistent, steady progress
- Now:
- I just came back from my first trip in years
- On the first day of the trip, we went on two birding outings, I prepared our meals, AND I had my first bath in years
- At various points over the years, any one of those was unthinkable. As recently as a month ago, all of those together was unthinkable
- I suffer no ill effects
- I’m able to take on most of my old chores, I cook proper meals most days after work, I’m starting to take (short!) walks outside, and I just baked banana bread (I gave up baking for years)
- At this point I’d say I’m at about 65% heading to 70% of my old functioning
Things That Didn’t Help
- NAC
- NMN
- Heal Your Headache Diet
- Quercetin supplements (with a caveat—see things that helped)
- Going off caffeine
- H1
Things That Made Me Worse
- Low-dose Abilify (multiple month flare)
- Amytriptaline (made me a zombie)
- Red light therapy (caused PEM)
- CHOP protocol and physiotherapy for POTS (both PEMed me, but I didn’t know I had ME/CFS yet)
Things That Helped Somewhat
- Propranolol (both migraine and POTS)
- Green light therapy (for migraines)
- Sleeping on an incline
- H2
- Ice hats
- LDN (I’ve been on this for years, predating long Covid, but I assume it helps to some extent)
Things That Helped A Lot
- Compression, electrolytes, etc.
- GABA and glutathione supplementation
- Sunlight (carefully titrate)
- Focusing on improving sleep, including circadian rhythm through light therapy
- Lymphatic massage of face and scalp before bed and in the morning
- Ketotifen
- Algonot’s Fibroprotek (a high-quality quercetin and luteolin supplement)
- Qulipta
- Ivabradine
- Lactoferrin (improved sleep significantly and made it no longer physically hurt to wake up in the morning)
- Pacing
- Migraine glasses (specifically Avulux)
Keys to My Recovery
- Reducing allostatic load
- I really firmly believe the majority of people cannot recover from nervous system work alone. If you are in a constant MCAS flare, have uncontrolled POTS, are overwhelmed with stress, and are routinely in PEM, there is such an immense allostatic load that nervous system work can’t overcome it
- Basically everything that follows, other than the nervous system work itself, was about reducing the allostatic load, which I believe opened up the space for limbic retraining to work once I found the right tools
- Getting the right diagnoses and starting appropriate treatments
- Reducing allostatic load, as above
- Understanding the connection between dysautonomia and blood glucose regulation was really helpful—Shout out to the Long Covid Dietician/Lily Sprechler
- An incredibly supportive partner
- He believed me from the very start and never doubted me
- He started to recognize patterns and could tell me when I needed to pace better, when a migraine was coming, etc. often before I could
- He took on the lion’s share of the domestic work so I could rest and pace
- He radically reoriented his life based on my needs and limits
- A supportive workplace and remote work
- I’m very lucky to have a very supportive boss and colleagues
- The ability to work fully remotely with medical accommodations in place, including often from bed lying in the dark, plus generous sick time allowances, are the only things that kept me employed
- Financial privilege
- I am lucky to make a very good salary. Even over a couple years of being the only one working (which did NOT help with stress), I’m able to live in a safe home, pay for supplements and lifestyle things, and not worry about paying the bills. I know this is not the case for so, so many
- Taking control of my own recovery
- I work in medicine (non-clinically) and have the clinical knowledge and research skills to be able to read, understand, digest and synthesize research and the credentials and language to be taken seriously by doctors
- Every single diagnosis other than ME/CFS came from me researching, assessing the diagnostic criteria, and bringing it to my doctors
- And every successful treatment came from me refusing to take subpar results as “good enough” and researching other treatments to bring to my care team
- Getting off of doomer subreddits and forums
- The ones that claim only 5% of us will get better (that is not backed up by science, it’s way higher), the ones that tell people to accept they will forever have the quality of life of end-stage cancer patients, the ones who claim those who recovered are either lying or never really had ME/CFS in the first place
- They made me depressed and hopeless and stopped me from trying things that have turned out to be life changing
- Similarly, the book How to Be Sick caused a two-month flare because I was terrified that this was the rest of my life, which was the message I was getting from very well-meaning but (I think) misinformed and hopeless people
- (I’m aware this may be contentious and derisively quoted in said forums. I understand)
- A refusal to stop trying, and believing improvement was possible even if remission wasn’t (I now believe remission is possible and that I’ll get there)
- I just couldn’t accept that this was what life was going to be: constant suffering, incredibly low quality of life, losing more and more things that give life meaning
- Whether through scientific advancements or MacGuyvering my own treatment, I had faith that I could improve. Maybe not go into remission, but I could suffer less. I took every tiny win as evidence that I could, in fact, improve
- Recovery stories
- Even in the depths of my hopelessness and resignation, I had this little voice that said “okay, but some small number of people DO get better”
- And then I started thinking, “These are the ONLY people claiming to recover. I can either stay hopeless and do nothing or I can get on the only train going in the direction I want to go.”
- Even though I didn’t think it would work for ME, ignoring the only people experiencing recovery just seemed like self-sabotage and I knew I’d never forgive myself for not trying EVERYthing, even if it amounted to nothing
- And then I started thinking “well, why NOT me? What’s so special about me that this wouldn’t work for me but would for hundreds or thousands of others?”
- Limbic retraining/nervous system work
- I tried a variety of things, read multiple books, tried Primal Trust, did an online course through my long Covid clinic—none of it was getting me anywhere. The books were often too woo-woo, Primal Trust was overwhelming with the sheer volume of information. Nothing was really working for me. Sure, the exercises felt nice, but I wasn’t getting anywhere
- I stumbled upon a blog from someone in recovery from ME/CFS through a post comparing different programs and she mentioned she’d worked with a coach, Tessa Malcarne. I liked how she talked about it and I liked Tessa’s website and the quite substantial excerpt from her book I was able to read
- So I bought the book (You Only Need You). It’s expensive. I’ll say that up-front. But she has discount codes on her Instagram (go back to posts from May 2025), which made it more affordable (in retrospect, for work that has been life-changing for me and compared to the literal thousands I’ve spent on supplements, appointments, devices, etc. I’d happily pay full price). Note: I have no connection to Tessa Malcarne other than benefitting from her book immensely. She also has a free podcast that I think would get you every thing you need
- Her work has four key elements:
- Understanding the science/mechanism at play
- Simplicity and self-belief. You don’t have to do a course. You don’t have to do an hour of rounds every day. You don’t have to follow some rigid protocol. You just have to learn to speak the language of your nervous system so you can understand what it’s telling you and respond back in a way it understands
- Learning to welcome, accept, embrace, and surrender to your symptoms
- Learning to actually FEEL, process, and digest your emotions, which includes addressing things like perfectionism
The Exercise That Was The Key For Me
I’ve posted this elsewhere, but will post it again here because it has given me my life back and I hope it might help others.
I start with some slow breaths and self-holding, and then I walk through the following, ideally out loud but in my head is okay too. I’ll use migraine as an example.
- Hello migraine. Hello neck pain. Hello sound sensitivity. Welcome. You’re welcome to stay here as long as you need to.
- I accept whatever you’re here to tell me and whatever you need me to do.
- I surrender to you. I will not fight you. I surrender. We can coexist as long as we need to. I surrender. I will not fight you.
During that last one, I consciously release as much tension as possible from my body. Releasing my shoulders, my abs, any bracing. And then I go about my day. Generally in a matter of minutes, the symptom has resolved.
Looking Ahead
I haven’t had PEM in several months, despite levels of activity that were unthinkable just a few months ago. I get a few headaches a month that resolve in minutes with the above exercise and usually 1-2 actual migraines needing medication. I am increasing my activity quite quickly at this point, after going much slower. My goals are to increase my walking frequency and length, start eventually adding some strength training, and eventually get back on my beloved bike, as well as continuing to improve my sleep. I’m also hoping to start seeing loved ones (masked!) again, after, in many cases, literal years of not seeing them. My sense (having not been here before), is that the major task before me is increasing my stamina and capacity in ways that feel safe for my nervous system, while continuing to address things that send threat signals like perfectionism, overwork, etc., and continuing to respond well to symptoms if and when they arise.
If you made it to the end, well done! I didn’t mean to write a dissertation, but that’s the reality of what we’re collectively living with. I’m happy to answer any questions, but will not be debating the efficacy of limbic retraining/nervous system work.
u/WandaTheWandie — 4 days ago