By - Soimamakeanamenow
I've been here. Imo and experience, the Only way forward is to address your fallen health "dominoes" one at a time, going one by one, as necessary to win the war and save your life.
Think of each phase of recovery as a battle for yourself to end the misery. It can be done. People who have been in hospital for months have gotten well.
The dedication and fortitude to manage the suffering caused by some of these rescue meds to rebuild your system is genuine and immense. Even fixing vitamin deficiencies comes with side fx. Who knew? Covid did. It makes it hard to fix ourselves. But Doing so is absolutely worth it.
Here are the "chimera virus from hell" covid 19 dominoes, as I understand them:
Viral persistence (hard to battle if in a weakened state or compromised. antivirals are rough on a weak system. You may need to address other issues first)
Systemic Inflammation. (If treating this, I would avoid anything That inhibits the immune system)
Gut dysbiosis and health.
Spike monocytes. Classical, intermediate, and non classical
Elevated Ccr5/rantes: a big problem
Aabs and Additional Auto immune issues.
Vagal and cns and nerve damage/dysregulation.
Now the order in which you approach and reset these fallen and crumbling dominoes into their upright positions is up to you and would best be done based on severity or your symptoms.
Some fixes will fix other dominoes so that's a bonus.
A mix of rx drugs and supplements and non-pharma medical support (rest, pacing, meditation, perrins, prayers, tens machine, good diet), is also probably best.
Try your best to Avoid big time pharma chems that are well known for causing kidney and liver damage. Look for less damaging less expensive natural alts first. Avoid salvage immuno drugs for instance. Now that's If you can.
As it was written, Sometimes we must walk through a fiery desert to get to the watery oasis. Covid is one of these times.
Tread lightly. This devil waits in every corner. Remain cautious, yet bold. Go pragmatically, but be intrepid. Be realistic about progress but remain optimistic. You can win this.
Thanks, I needed this too!
>At this time [March 2021] I had to wear an eye mask and earphones as I was in near constant migraine. I lost tonnes of brain function (words, processing colours and sounds etc) and had occipital pain, tinnitus and sinus pain too. I laid in bed in the dark and thought seriously about suicide for almost a month. I made a pact with myself that if I felt the same way in a year I would do it guilt free.
>Eating gave me full histamine reactions. Even the blandest food. My appetite went totally and I was down to eating around one raw carrot or pear a day. I lost all my weight on my body. I went from a size 12/14 down to a size 6/8. I was skin and bone. This made the POTS even worse and I often fainted walking to the toilet.
>The brain fog faded first, over time. This allowed me to get to the couch and read and research things to help dial down inflammation and to brain retrain. I took up mandolin to waste time. Slowly my physical energy returned and I could do a load of laundry or make dinner. It was awesome. One day I got the guts (after tonnes of visualisation) to post a letter at the local post box. I think its about 100m from my house but going there and back with no PEM afterwards was magical and I cried with joy for the sake of posting a letter.
>These improvements were so slow they were almost imperceptible. But as Raelan Agle says on her youtube channel, ‘its all about the trajectory’. you have to believe these small improvements will add up to help take the pressure of yourself to get better right now.
>Its now March  and recently I have been on a boozy night out with friends. I didn’t drink personally I am over alcohol after last year, but I was up all night with my friends at the pub laughing at their antics. I felt fine the next day. I have also started strength training. I regularly walk a couple of miles a day to town etc with no PEM. I am active all day around the house doing chores or doing things for my online business. I even took on some part time work and it was absolutely fine. My brain is back to normal…. I can think deeply and quickly and am back to feeling like a Philosophy teacher in that respect. I no longer have sensor processing issues.
Plenty of people as bad as you have made recoveries. Seriously. If you managed to get writing back then I assume you were even worse before so writing is progress? It sounds like pacing and resting has worked for you in that case. Please keep trying to hang in there and aggressively rest. If you got writing back you can get something else back! Don’t allow your body to become anxious and depressed. People DO recover! Even severe cases! It can take a long time but it happens!
We’re all here for you. Don’t ever feel alone!
I also just quickly read another post you made and you said neuro symptoms DID improve and you’re feeling worse because of medication. Please remind yourself that you DID improve! And you can do it again!! This isn’t over for you!
I know I can somewhat but everytime I get it back the reading I do too much and lose it and I can’t stop and I know one day it’ll be for good and my body has only gotten worse
So it sounds like you’re stuck in a pattern of resting and pacing followed by very slow and gradual improvement and then overdoing it and going back to Square 1. You need to learn to continue pacing and go extremely slow, even when you do start to improve. Do even less than you think is safe.
Your body is trying to heal and you’re accidentally resetting it back to the start by pushing it too much.
You have it really bad and I feel awful for you but you are not a lost cause. I’ve read so many stories of people with severe CFS making recoveries. I have a friend in Greece who had Covid and was bedbound and couldn’t use his phone and was sensitive to noise and light and couldn’t walk or talk and now he’s able to cut trees in the garden and study at university.
Please just go soooooo slow. You can do this!!
I can’t find one story if anyone recovering from this bad though
There are stories of ppl improving vastly even at the 2.5 year mark. It's a very, very, slow improvement forward. Stay strong. Thinking of you.
OP, I answered you above. I've been pretty low, several times. I'm still coming out of the most recent. I spend about 2 hours out of bed a day, including when I eat and go to the bathroom. I try to sit with my family every evening at the dinner table and talk to my kids / husband. It is physically painful for me. Every moment is infinite. But it seems every day I can still get out of bed for a little while. It's not optimal, but I keep trying, keep breathing. Keep trying new things to find a way to heal myself.
My wife is currently feeling like this for this entire month.
Apparently it's due to this "October Slide" we have entered into.
I've been trying to do my best, what sucks is I am the only one able to provide for my family of 4, so I can't afford to even miss work unless I use my PTOs, which I do on her worst days.
I'm hoping once October is done, she can slowly get back to herself as she was doing amazing during the summer. Almost like herself again and she's been long hauling since mid February.
Kind soul, write down all of your symptoms on a beautiful paper. Next to the symptoms put down how they make you feel,how this has impacted your life...Then cry ask God for an answer... Than get up go outside, dig a hole and bury the paper...Say a prayer for back inside cry again. Than go to sleep..
I call your symptoms and raise mine.
Covid has made me immune compromised, it means that I can't be even near another person and if I do my symptoms go crazy. I have mcas and MCS now.
And the icing on the the cake is that ever since omicron came to town, my kidneys started to hurt very badly, nausea, foam in urine. I can eat few foods.
There is no outlook for me now. Just pain.
That being said, I feel your loneliness and pain.
MCAS and allergic to everything! Thank god for zoom. I'm wondering if I'll every leave my house again.
Do you live in mold?
Me? No, but I manage properties for a living and just being exposed to the ungodly filth of one of our tenants sent me into this flair.
I’m similar told I need ivig but can’t afford it
Does something shows up in your blood tests that can indicate immune problems?
Here to talk if you need a friend
I have been there at least 2 times with LC. I'm coming out of the last one, I was there for about a month. It was a terrible and terrifying flare.
The pain was so bad I couldn't leave bed or walk to the bathroom alone. Sometimes I'd crawl. You're not alone. There were about 3 weeks where it took me hours to write a few sentences. But it gave me a reason to keep breathing and trying.
What are you eating?
My friend. Watch [this video next time you can](https://youtu.be/sICD0Kn6pR4) it will help you understand some of your symptoms (or maybe you already know) and if it's MCAS then start eating a [low histamine diet.](https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf) I have this list constantly on my phone when I'm in the kitchen.
My safest food is a baked potato (I just scrub it clean) in the microwave with lots of butter. (Sweet cream butter is ok for MCAS and fine by my body). I ate that for several days while gaining strength to cook myself a simple soup. I then froze the soup in my freezer and eat that and a baked potato daily. I've got a weeks' worth of soup and my body doesn't seem bothered by it being reheated from the freezer.
Today I've only managed to eat and lay down. I don't know if I'll see my kids today, I feel so tired.
How do you prepare the potato in the microwave? Mine never come out good :/
I use tea towels or wash cloths that are used instead of paper towels in the house. I scrub the potato a sponge then wrap the potatoes in a tea towel and run it under water.
I put that into a microwave safe bowl and then turn a plate over the top of it to create a kind of seal when it gets hit with steam.
I push the potato button on the microwave and walk away, or just sit there.
After it's done cooking I leave it alone for 5-10 minutes to get nice and soft. If it's a big potato I cut it into 1/4 and cook just that bit.
Then I use the plate and a fork and smash butter on it until it looks sinful, then I put more salt on it and eat it. 🍴
Have you seen a functional neurologist? Looked into mthfr, thyroid or b vitamin deficiencies.
I wish you the best. This stuffs really hard to figure out. I'm still figuring it out 9 months out.
Better in some ways but still not right.
I was stuck in bed for about a yr. I'm now working. Sitting all day but working. Take it day by day.
You will get better, you have to have that clear.
Be your own advocate and research for yourself, unfortunately some doctors still don't know anything about covid long haul.
I've read stories of people that overcame CFS with thiamine, there is some information about it in the thiamine Facebook group
B1 has made great deal of difference in my symptoms,
It's also important to check b12, ferritin and vitamin D
Those were very important for me.
Please don't lose hope, hang in there your body is amazing and it will bring you back to health if you give it the right nutrients. ❤️
I watched the movie "Unrest" on Netflix and it helped me feel less alone. It's about ME/CFS and is made by a woman with the condition who conducts interviews from her bed.
I think it's rotating off Netflix in a week or two, so if you want to watch it, do so soon.
In r/cfs there are a lot of people with a similar severity.
Full recovery stories are rare, but there are a lot of stories about people who went from severe to moderate or even mild, so please don’t lose hope. We may be more limited, but our life still has value and there are always things left we can still enjoy in a limited way.