medications that helped me (from severe to mild)
hi everyone, i've (33F) been following this reddit page for a year and a half, since i got really sick with potential mecfs / long covid / post viral fatigue / floxing (probably a combo of all). but i didn't have the capacity to post. I'm going to make a TLDR at the bottom of the post, but to summarize in the beginning so you can see if it's worth your spoons to read, i'm going to be sharing the medications and other things that helped me over the last year and a half of dealing with this disease. it seems i am finally recovering so now it's time to process this horrific experience.
a summary of the last year and a half: i spent 3 months in very severe category bed or house-bound, 6 months sometimes able to leave the house but in a crash cycle ( i think i still qualified as severe or moderate in this phase). 3 months feeling like shit but somewhat functional. in the worst moments I was in the FUNCAP 1-1.5 range and nowadays I am feeling like a Funcap 5 or so.
and just in the last 3 months or so do I feel like i'm starting to come out of the tunnel and the worst of the illness is starting to feel in the past tense.
for the longest time, i felt there was no hope because my body was not recovering and I was still at the mercy of the crashes and PEM. when i was having some good days, I was still waiting for the other shoe to drop. And I know that MECFS has no cure and I was fitting the diagnosis criteria because of the PEM. However, at the beginning of this year, I got motivated to just try more things and see if anything at all could help me. even incremental improvement is something to celebrate because this disease takes away so many dimensions of life.
months 0-3: a very what the fuck is happening time, week after week still expecting to recover and not understanding what was happening. crushing fatigue from just walking to the bathroom, unable to turn over in bed, couldn't handle being outside of my room. couldn't process tv/media, constant panic attacks and overwhelm. crashing from daily living tasks, complete exercise intolerance, could barely feed myself, it was so hard to breathe, heart constantly racing.. you guys get it ok, fucking dire. feeling the worst ever while trying to get insurance, manage to do some work which would give me PEM. ok i won't linger too long here.
For the first 7 months or so I think I was too lost and foggy mentally to make much strategic plans but i did implement
-pacing, avoiding crashes. but i felt quite lost because it wasn't always predictable what would make me crash.
- gluten free diet (i noticed immediately my body felt less inflamed. i think i developed an intolerance later in life)
- acupuncture- i think this helped me get out of the initial phase of not being able to leave my bed but after a few months i stopped noticing improvement
- iron supplementation. my ferritin levels were in the single digits and they've slowly been improving but it's taken the better part of the year to get them higher.
- supplements like magnesium, vitamin e , vitamin c (these were prescribed by my doctor to help with underlying inflammation from endometriosis)
month 6 I started to do IFS + somatic therapy with an experienced practitioner which I do think has helped slowly over time.
around month 8 of getting sick, i was prescribed LDN. starting dose 1.5 mg, moved to 3 a few weeks after that.
- instantly (as in a few hours later) noticed myself getting out of a crash/ neuro-inflammation spiral
- every time i increased the dose i noticed my heart was wonkier and my pots would flare up
- noticed myself feeling noticeably happier
-over time I was having increased capacity (daily steps started to increase steadily, before this anything over 4000 steps was an instant crash)
- flares where i became bedbound again started to get shorter (became 1 week instead of 3 weeks)
In the winter, around months 10-12 I felt that there was a plateau happening and i wasn't getting better. the damp cold was making my asthma worse and my apartment was having a leak. i was able to cook a bit but not stand very long. still getting flares from housework. I was pretty much unable to work and not even sure how i was going to make ends meet. still coudn't exercise and was crashing a lot. my parents were fully financially supporting me for 2 months. stopping the panic of survival helped me massively. i wish i had asked for help / knew what to ask for sooner.
around month 13 is where I went to my doctor and said please lets try as many pharmaceuticals as possible. He gave me a list to work through slowly. I also decided to be quite aggressive about pacing and energy boundaries. I was also chugging salt water and fruit juice, but it was hard to keep up with the amount i needed.
we tried: antihistamines daily morning and night (ebastine and cetitofen)
i started to notice that it was helping my debilitating POTS symptoms , particularly the racing heart in the morning and i had less burning muscle feelings when i would wake up and try to get dressed.
i started to implement nervous system regulation when i would have flares which helped because my panic about my symptoms and constant monitoring for when they were arising would make me feel way worse.
month 14 got on fludrocortisone to raise my blood volume/ increase blood pressure and treat the POTS. one of the only clinical signs that was appearing was low blood pressure and racing heart so my doctor decided to try it. now here's when i got my wings. Within a few days of taking it, I was suddenly able to stand for like 2-3 hours. It was the best feeling ever. I take it daily still and take between .05 mg and .75 mg (half or 3/4 of a .1mg pill). that way I didnt need to drink as much salt and sugar.
month 16 I got the final and best medication: ivabradine, 2.5mg the rockstar that has finally calmed my racing heart that has plagued me for most of my life and incapacitated me during all this long covid business. it has changed my life. my heart stays steady. i'm not as constantly anxious.
month 17/ today: i take my meds every day and for the most part i feel pretty 'normal' just that i go a bit slower than others and need to rest a bit more after big days. but i don't have to be so careful all the time, i feel like i can "push it" a bit and experiment with my capacity. i can walk uphill and carry my groceries. i go out dancing and can live to tell the tale the next day. all of this seemed fundamentally impossible a year ago. sometimes i have a crash-y day but it only lasts for one day. around this time i'm feeling like i can socialize and meet people. i had started dating in the winter but i think it was too soon and put stress on me.
my hopes for the future are to start to strength train without flaring myself to help with bone density loss. i'm also finally working part time and i'm hoping to stabilize financially because i've been in a very precarious situation the last year. yeah, basically, i finally can think a few months ahead. i never thought i would get that back. i also hope to start to share about this experience because it has been life altering and yet i had no words to express it for so long.
tldr: LDN helped me, daily antihistamines helped me, POTS medications to lower heart rate and raise blood pressure helped me most of all. probably time too and trauma therapy. all went from very severe to mild.
PS my initial illness onset was a flox sandwich (where the bread is a bad virus, and a floxing in the middle). i was toast after that.
i already had a POTS and endometriosis diagnosis and was having very very mild long covid symptoms for a year prior to all this mess.
i'm open to questions! thanks for reading!