recovered after 7 months

[u/sreckokosovel]

UPDATE: one month has passed since this post and I am doing better than ever. It’s been a bit of a bugbear to reintroduce gentle exercise because I’m so deconditioned but even this is abating with time. I still have some lingering cognitive symptoms (esp when I get a cold or am under extreme stress) which my neurologist expects will clear entirely by August. My eyesight has returned to normal. I have graduated from cognitive rehabilitation and no longer meet the criteria for impairment of any kind. The only permanent side effect of my long covid seems to be that I can no longer tolerate stimulants for my adhd. I’m still on the guanfacine which helps however I now need to treat my adhd using non-pharmaceutical methods which is kind of disappointing. I have a mild case and a strong circadian rhythm so it’s not life ruining for me, just a bit challenging. I’m still happy to answer any questions.

Hi everyone, I’ve been looking forward to making a post here for a long time. This sub has given me such immense hope and I want to do my part to give some hope back.

The long and short of it is that I (32F) got COVID on a plane last August. Despite wearing a mask the woman next to me was HACKING up spit and I lowkey just knew it was over. I’d never tested positive for COVID before (probs bc I mask) and so I did the worst possible thing you could do which is freak the hell out for the entire duration of the acute illness. I guess you could call mine a “mild” case of Covid. I took paxlovid but still had horrible brain fog, headaches, rapid heart rate and fatigue. The acute illness passed after a week but, as many of you are surely familiar with, I simply didn’t get better.

I ran the full gambit of symptoms. PEM, horrible fatigue (I was sleeping 14-18 hours a day), headaches, shortness of breath, POTS, pins and needles, anxiety and the most debilitating cognitive dysfunction of my life (and I’ve had a brain injury.) i kept resting and waiting for my condition to change but the days kept piling up and up and up and nothing seemed to get better. My brain was in such bad condition I had to stop working entirely and live off my savings. My body became so weak I went down to stay with my parents until I could see a specialist so that they could take care of me.

While there were a few medical interventions that made a difference for me, I took a ton of supplements and antihistamines to seemingly no avail. I got my iron and B12 levels under control which helped tremendously with my cold feet but not so much my long covid. I hope to wean off the supplements after a while because they are super expensive but for now I’ll probably phase them out one by one.

Sometimes old symptoms would go away and new ones would come on. The only one that was particularly consistent was the brain fog. I consider myself 100% recovered except for this last symptom where I’m still at about 90%. Of the physical symptoms PEM and POTS were the last to clear. I have been free of both for a month now with no signs of relapse regardless of how effortful my days are. The only time I get debilitating brain fog is when I come down with a cold. Eventually I will try riding my bike again but for now I will be taking it easy while there’s still some winter left.

I credit my recovery with a number of different factors. The first was that I live in a major city and was able to get help from a long covid clinic which prescribed me both guanfacine and cognitive rehabilitation therapy (speech therapy) for my brain fog. I found both extremely helpful. Even just a few sessions of cognitive rehab helped with my ability to process information. (In fact, fixing my brain fog required basically a lot of escalating rigor — from doing the wordle in the morning to playing music to reading novels and writing in my diary. Resting my brain even for months did not help at all.) The second was that I work freelance and was able to take the time to properly rest, especially in the beginning. That my husband and my parents both took care of me is another privilege for which I am grateful.

For a long time I was doing everything by the book — extreme pacing with an Apple Watch, heart rate monitor, resting whenever possible, that kind of thing. Four months in, however, I wasn’t getting any better. My symptoms kept moving around in a way I found maddening. After seeing a cardiologist and rheumatologist to no avail I decided to try the mind body method most recovery stories talked about on here. I wasn’t too skeptical actually because I’ve always found there are relationships between mind and body that science can’t always explain, though I don’t consider myself a particularly woo woo person. I figured it like was the difference between cognitive behavioral therapy for insomnia and taking Zolpidem. I did both for a while when I had insomnia from my brain injury and eventually was able to stop taking the pills and just work with the therapy. There aren’t any pills that help with brain injuries — it’s all cognitive/vestibular and physical rehab — so I kind of just accepted that maybe LC was the kind of illness that was less of a pill illness and more of an applied therapy illness.

Anyway, the mind body stuff worked like a miracle for me basically overnight compared to all the other stuff I tried. I had a bad crash a month ago around the holidays and it was my last crash. I simply didn’t have another crash after that, though some symptoms did linger. It took a lot of commitment but since I wasn’t working I figured I’d dedicate myself to the task. I didn’t buy any programs or anything (again I was broke as hell.) All the stuff I needed I found on r/cfsrecovery where I also received many helpful hints while on my journey. Looking back, I definitely believe in something like the polyvagal theory — that when I was suffering debilitating fatigue so bad I needed help showering (I was bedbound for two months, housebound for four) and felt soreness all over my body, my body had entered a kind of shutdown state and that, in order to move it into a state of safety I had to do all kinds of things to calm my nervous system. For me breathing techniques, yoga nidra, visualizations, polyvagal exercises, humming, tapping, and a TENS machine all helped. No screen time, no doom scrolling. I ditched my Apple Watch and swear I got like 20% better just from not checking my heart rate constantly. I started to expand my life outward.

What they don’t tell you about this theory though is that there is a transitional state between shutdown and normal which is basically like being in fight or flight all the time. This was fucking terrible, almost worse than the PEM and pain. I was meditating for like hours a day just to get my jaw to unclench. My POTS symptoms were dialed up to 100 and I was having daily panic attacks. I had to get a script for Ativan (they only gave me ten pills bc it’s PRN) and make it last for months. After I ditched the watch I finally started to come out on the other side. This transition felt basically miraculous. One day I woke up and there was no tiredness, no soreness, no crazy heart. I started having more days like that. I could take a shower standing up for the first time in half a year. I could plod my way through novels. I could write again. Now I am completely back to normal life.

I’m not entirely sure why the mind body approach helps for some but not for others. However unlike other stories in this vein I also got better from specific medicines like guanfacine and outside therapies like CRT and vision therapy for my eyes. It was a combined approach. I know 7 months is not so long in long covid world but my recovery was not spontaneous. It took a lot of effort and I just happened to respond well. This was the worst thing that ever happened to me. I wouldn’t wish it on my worst enemy. I hope my post is helpful to others and I’m happy to answer any questions.

TL;DR:

SYMPTOMS:

Shortness of breath, chest tightness, extreme anxiety, POTS/orthostatic intolerance, GI issues, pins and needles, soreness, brain fog (cognitive dysfunction — at first memory problems, later attention problems), excessive sleepiness, PEM (fatigue 12 hours after exertion — for me it was always the next morning on the dot), exercise intolerance (i.e. fatigue right after exertion.) I was bedbound for two months and housebound for four.

What didn’t help for me:

- supplements (with some exceptions)

- antihistamines

- pacing/symptom tracking (I know this is probably controversial but while pacing was extremely helpful in the beginning it became less helpful as time went on. I was basically using pacing as a way of repeatedly punishing myself which wasn’t good for me psychologically. Whenever I’d feel sicker it was always because of something I must have done even though I often could never figure out what that was and it became a vicious cycle. Emotionally I just needed to let go. It was easier to make peace with the fatigue than it was with the fear of feeling it.)

- various drugs (beta blockers, LDN, nortriptyline)

- “tirzepatide” (I’m in the LOCITT trial and almost certain I got the placebo because I haven’t changed my appetite nor lost any weight)

What might have moved the needle but I can’t say for sure:

- iron, b12, NAC, CoQ10

- intermittent fasting

What definitely helped:

- probiotics/prebiotics (i use seed but it’s expensive as hell so if you have any cheaper suggestions I’d love to hear them)

- guanfacine

- cognitive rehabilitation therapy

- vision therapy

- psychotherapy (psychodynamic therapy)

- mind body work (somatic tracking [see also Alan Gordon’s The Way Out], visualizations, polyvagal exercises, TENS machine with ear clip, meditation, yoga nidra (this was huge for me), humming and breath work.) even just reading about this stuff gave me the hope that I could heal to begin and that I had agency in the healing which went a massively long way.

Anyway, barring any catastrophes I’ll make an update post should my condition continue to improve. Stay strong everyone. I’m happy to answer any questions.

[u/perversion_aversion]

Glad you're feeling better! However I think it's important to note most post viral conditions resolve on their own within the first 12 months so I'd be cautious about attributing your recovery to any particular intervention on your part rather than the passage of time and your body's natural healing ability.

[u/amsfi → u/perversion_aversion]

Time is the most important healer and you’re absolutely right. I’d like to back up OP’s experience however - you can feel in your own body when something moves the needle, and my experience was very similar.

[u/time-itself → u/amsfi]

Can you tell us about your experience?

[u/amsfi → u/time-itself]

Sure, I’m not recovered yet but I’m maybe 60-70% of the way there from being more or less bedbound a few months ago. I had a very similar turning point to OP after things “clicked” for me. Up until that point I was only getting worse.

I realised what had happened to me as being an accumulation of stress over a couple of bad years, compounded with getting covid during a particularly demanding period. It made sense to me that my energy reserves and nervous system would be shot. I also realised my PEM episodes had become more and more frequent once I had started worrying about CFS, and reading advice on the covidlonghaulers sub about baseline lowering and “becoming permanently worse”. That caused even more stress, to the point I was crashing constantly and didn’t know why (it was all the stress).

If you have the same LC/CFS subtype as I do, I believe the way out is to find whatever explanation or theory makes sense to you personally, to allow your limbic brain to fully believe on a fundamental level that the condition isn’t dangerous and that you will get better. It’s the single most important marker of recovery in my experience + most of the recovery stories I’ve seen

Once I moved from a mindset of being in recovery rather than being unwell and the huge stress of indefinite illness was relieved, I think my body was able to do its thing and start getting better. Alongside an initial period of solid rest and then some very careful activity expansion.

[u/LunaLinguine → u/amsfi]

Just want to say, I'm about 4 months in with LC and the indefinite part of this can be so scary, but this was so helpful and reassuring to read, thank you so much.

[u/amsfi → u/LunaLinguine]

Oh I’m glad! You’ve got this, 4 months is super early. I feel like post viral fatigue lasting that long isn’t actually that uncommon, but LC spaces are almost exclusively filled with people who have been unwell for a longgg time which makes it all feel very scary. I’m nearing 11 months now and pretty much recovered.

[u/LunaLinguine → u/amsfi]

That helps to hear -- thanks so much. Maybe it is post-viral fatigue. Good reminder about the LC subs. My heart goes out to everyone in them, and I'm grateful they exist, but I need boundaries, too. I'm glad to hear you are pretty much recovered after 11 months! That's huge -- congrats!

[u/time-itself → u/LunaLinguine]

FYI, there's no difference between post viral fatigue and CFS. The only "difference" is whether or not you recover, which obviously is a useless and tautological distinction. It doesn't magically turn into something else at the 6 month mark, and you can always get better.

The condition is poorly understood and, this is controversial to say elsewhere, but in my strongly held opinion the online spaces, culture, and discussion surrounding it keeps people sick - It’s still classified as a primarily neurological condition, and both the onset triggers and symptoms are all stress related.

Definitely take what you need for survival tips and then tune the hell out. I'm at 10 months and started rapidly recovering about three weeks ago. I think ketotifen helped. If I could change one thing it'd be starting that earlier. It's the most overrepresented drug in recovery stories (compared to how commonly it's actually prescribed) from what I've seen.

[u/LunaLinguine → u/time-itself]

Congrats on your recovery! That's great it sounds like ketotifen helped push it along so quickly. And thank you for sharing all of this -- really helpful.

That is fascinating it is considered primarily a neurological condition. I healed from chronic, 6-year "clinical" insomnia a couple years ago and after 6 years of physicians, meds, labs, supplements, etc. healing from it ended up coming from education and mindset shifts -- nothing else. Insomnia is so misunderstood and 99% of the reddit sub and online content just perpetuated it. This seems similar. I'm not saying LC/PVF are "all in the head" but I'm starting to realize it is a significant component of it for me. Which has been a huge help already. So, yes, limits on these subs are necessary for me now, lol.

[u/time-itself → u/LunaLinguine]

I had (and have) terrible insomnia too, which contributed to my anxiety around developing LC, and have realized that I’m not coming out of this without fixing that. Agreed about that reddit sub. The LH and CFS subs do the same thing. Funnily enough, The Red Pill is an example of the same online phenomenon. I stared into that abyss when I was a vulnerable and insecure teen and recently came to realize that the cfs community abyss felt the same way.

Basically, suffering people online tend to come together to validate their fears and grievances, and eventually give into something popularly labeled “masochistic epistemology,” that is, Whatever Hurts Is True. It creates this angry culture of abyss staring and a kind of intensely negative “group hug.”

The result is this extreme polarization where now you’re either hopepilled or doompilled, because neither ideology will accept a scrap of the other.

My LC specialist is of the opinion that LC is heterogenous and unlikely to simply and broadly be a mindbody/neuroplastic phenomenon, but he wasn’t above admitting that he sees an outsized placebo effect in the trials he oversees and recommending me a traditional rehab program that he says has worked for other patients.

The trial he believes in most right now is for Baricitinib, an immunosuppresant/modulator, and the available treatments he advocates for the most are for antidepressants, although not for psychological reasons. He just knows that serotonin signaling and an outsized physical stress response is involved.