What am I actually supposed to be doing to get better?

anned22: My daughter found a physician (psychiatrist/neurologist) in Seattle, where she was living at the time, who specializes in treating long-term illnesses like Chronic Fatigue Syndrome or myalgicencephalomyelitis (ME). He put her through all the regular blood tests and maybe a few more, to make certain she did not have an identifiable syndrome or deficiency. He sent her to a naturopath school to be tested for food allergies; she turned out to be allergic to gluten (no wheat, barley, oats, rye, spelt), corn, sweet peppers (any color), cow dairy (goat and sheep dairy are fine), chicken eggs (duck eggs are fine), strawberries, and some others. And when all that was cleared ups, he put her on a very low dose of Provigil (modafinil); her dose is smaller than the smallest tablet. He also put her on several supplements but I don't know exactly what they are or in what amounts.
Now, many years later, as long as she takes the modafinil, the supplements, and keeps her diet very clean, she does well. And eating a small amount of one of the foods she is allergic to is not serious, it simply leaves her feeling awful for a few hours. It was not an easy nor a quick recovery. But she has been able to lead an almost normal life. She is aware that this syndrome is in her background and is careful. Some would say she is more active than the average person at her age, 56.

Hi everyone,
This will be my fourth year of having long covid (I’ve had it 11 times).
It was really hard in the first 2 years for me because nobody understood how I was feeling, not even my own go.
The best thing that ever happened to me was being referred to The long covid clinic.
My first initial appointment was with the long covid doctor.
After going through what had happened and all my ailments. He instantly knew what I had and diagnosed me.

Look up MCAS, in short your body is attacking itself triggered by covid. So your immune system is producing to much cortisone which which makes you feel very weak, tired.
I they prescribed me two strong antihistamines , one in the morning and one at night.

Also look up about POTS.

Their is a lot more other symptoms I have including nausea, joint pain, chronic lower back pain, brain fog and covid bowel.

The advice I have been given from Long covid doctors,matron,o/t,physio
Is to make everyone one aware of what is happening to you.
That you might have to cancel meeting up with family/friends/hair appointments ect.
Listen to your body and if you need to lie down and you can do, do it.

When your having a good day don’t try to do everything and use up all your energy because you might end up in bed for the next two days.

When I was asked by the physio to do a diary of what activity I did and how it affected me.
I was really shocked that doing an online food shop affected me more than when I did a physical one.

Because covid has basically invaded our bodies our immune system is doing it’s best to fight and keep our bodily functions going.
I was told every day to lie on my bed with pillows under my knees. No phone,music or tv and close your eyes and just concentrate on your breathing from your stomach for 10 minutes a day. By doing this your immune system can solely concentrate on healing.
I’ll try and add some of the helpful documents that they gave me.
Sorry my punctuation is awful and a bit disjointed.
Kind regards Claire

I’ve had LC for over three years. At this point, I might have a really good week and then a really bad one. I don’t believe anything I’m doing/not doing affects anything. I used to think if only I slept more, made myself take a walk, drank more green tea, got out of the house, eat more, etc. Now I’m of the opinion that LC is kind of driving the train and I can only get off when it makes a stop, but it isn’t up to me. LC determines my behavior, activities, sleep, exercise, etc. It’s not a bad idea to see a specialist to address a certain symptom for symptomatic treatment, especially if you experience rashes or things that can be treated with existing medication. It won’t help the underlying LC, but it will help you feel better if it can be treated. I also get the LC depression/anxiety/sometimes borderline suicidal mindset where everything feels so out of control and overwhelming that you feel DESPERATE to do something, anything, especially if you were a person with an extremely active life pre-COVID. Just the tiniest bit of control can really help with that. A good day for me means taking off to hike, etc. even if it’s only for an hour instead of six. It’s not much, but I did something.

Although I thought it was silly at first, I did the same meditation-type thing with binaural audio when I was really sick (I still use it some, but because I was so ill at the time, it can trigger that mindset). It really worked! Because of my internal tremors, I wasn’t able to do completely silent, but I’m going to try that now. My tremors sometimes are not as bad.

I feel like you are describing my situation exactly. I have not been officially diagnosed with LC but over the past 3 years have been tested for everything imaginable. I typically have a few labs that are "off" but nothing bad enough to warrant treatment or another diagnosis apart from POTS (hyper adrenal) and chronic altitude sickness. I am a different person post covid (which I've had 2x since 2021). I struggle with PEM, dizziness, shortness of breath, muscle and joint pain, insomnia, night sweats, gut issues and anxiety to name a few. All of which were not part of my life pre covid. I'm thankful to have found this group to realize it's not all in my head but am feeling depressed to hear that many of you have not found anything that helps, which is true for me as well - goodness knows I've tried dozens of medications for a variety of symptoms. Nothing works. Thanks for being here and being honest.

So true, this group really helps. Had an appointment with a neurologist today who squarely told me that none of my long list of LC sympoms are real. He puts them all down to Post traumatic stress and anxiety after having finally got covid after dogding it for years. I told him a have been bedbound for the past months and am unable to leave the house as I am physically to weak and unable to walk the stairs back up. He said the fact that I am not leaving the house is a clear sign of depression. He also put the POTS down to anxiety solely. I asked him if he could look into some of the meds such as LDN etc and he said all the LC clinics recommend was antidepressants which again proofed his point. I was in shock and disbelief that four years into this doctors are still this ignorant and gaslighting us!
The knowledge on LC is existent, why does it not reach the medical community?

That's terrible, I'm sorry you had to deal with a Dr who is unwilling to acknowledge and validate LC. I've noticed some Drs are still afraid to discuss or contemplate anything Covid related. I feel like they have Covid PTSD or something, I don't know. Clearly, you need to find a new DR!!

It’s awful. I have done so many “conventional” treatments that did not help me because so few doctors want to address the issue of something new, and not understood. Just get you on an SSRI so you will shut up!
I’d be happy to do that, but after trying eight different ones that made me worse, I just don’t think that’s the answer.
I go to an Integrative Medicine group that acknowledges LC, but so far after tests and tests and tests, no relief...no answers.

At my appointment today, I’ll bring up LDN treatment. It’s so hard for me to surrender that my life is over!

On many days - even most - I cope. I'm still working (fortunate to have had a home office for most of my long work life) AND my life has narrowed in scope and breadth dramatically since COVID the end of March 2023. Today was one of "THOSE" days when I just began to cry: I needed a haircut - even for Zoom teaching & meetings, I need to look professional! Pre-COVID/Long COVID, haircuts every 3-4 weeks; now, 2 months and I try to manage because going out is too exhausting. In two days, I have yet another doc appt. to deal with another symptom that has been ruled out for anything but LC. Then next week, btw two days of virtual teaching (30 students; 4.5 hours each night - OY!), another specialist. Piece by piece and nothing helping. I do understand @dloos, your frustration.

The best I could do was click the 'hug' symbol because I too want something to make me feel what I felt in March 2023 before I got COVID. I'm tired of being dismissed by so many docs.