1. < Post-COVID Recovery & COVID-19

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

Posted by Athena Atkins @athenaatkins, Mar 27 5:09pm

I’m having a hard day. I *think* that I might be getting better (my resting heart rate has been decreasing over the past two weeks, I seem to have less tachycardia in response to mild exertion, and I haven’t had a classic PEM crash in two weeks), but I honestly don’t have any idea what I may or may not be doing that is helping. I did spend all of last week in bed sick as heck with a cold, so maybe all that rest helped? I am driving myself crazy trying to figure out the pacing “sweet spot” of not pushing too much vs. being so inactive that deconditioning becomes more of a factor than the actual Long Covid. I am so scared of another crash (the last one lasted two full weeks and was awful), but I am also wondering how I will know when it’s okay to push a little more, start to try to get back to “normal”.

My doctor is supportive in the sense that she confirmed that I do have Long Covid, but I really have had no other guidance at all in terms of what I am supposed to be doing. She said that there are no treatments, so I have essentially been left to recover without any guidance on how it will look and feel.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

klehker | @klehker | Apr 13 8:03am
In reply to @barbarabell "I have the same problem. I cannot take SSRI medication at all. I want to try..." + (show)
@barbarabell

I have the same problem. I cannot take SSRI medication at all. I want to try LDN but I’m worried I’ll end up disappointed because of side effects. My main side effect is bad migraines from SSRI meds. Is anyone taking LDN who also is a migraine sufferer?

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I've been on LDN for about 2 months, recently increased dose to my max of 4.5. I've experienced no side effects. I've also had no improvement in symptoms. I'll give this new dose a try, then stop. I understand it's not effective for everyone. I am an occasional migraine sufferer, have had no increase in number or severity of them.

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diverdown1 | @diverdown1 | Apr 13 8:48am
In reply to @dloos "Your Neurologist is absolutely WRONG to say LC clinics offer only SSRI! Actually my LC doctors..." + (show)
@dloos

Your Neurologist is absolutely WRONG to say LC clinics offer only SSRI! Actually my LC doctors are the only ones who have not offered SSRI. They understand that this is NOT all in my head, but is an actual physical condition that is causing me such distress that YES, I do feel depressed, but it is not my root problem.
I’m about to begin LDN treatment and I sure hope it helps me.
Good luck to you.

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I hope it helps too. Keep us posted.

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1 reply
diverdown1 | @diverdown1 | Apr 13 8:54am

After two years, I am taking meds that help with the symptoms. I understand your concern about inactivity. I was running with my dog every morning and if not, I was walking. Now, not only is the dog not getting the exercise as much, when I do, I wake up feeling terrible. I get up, take my meds and then I am better. I believe I have gotten better since the beginning of this, however, I am still not well. I have a couple of friends who only had this around 6 months or so and now they are over it. Two years later, I am wondering but I do feel like I am getting some better. I do worry what it is doing to me internally. I know that tinnitus and some of the things I have are due to the nervous system. I am also trying to do puzzles, etc. to help with the brain fog. I know Omega 3 and other things help with cognitive skills. One day at a time. That is how it has to be an really that is all we have anyway. Research inflammation. Certain foods help with that. Inflammation is the cause of a lot the symptoms, such as the fatigue, PEM and just overall shitty feeling. Hang in there!

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rose5 | @rose5 | Apr 13 10:31am

Well, I have had Long Covid for
2 yrs and 3 mths. I do have quit a long list of symptoms.
I also have these thoughts of what to do. Rest, light chores, etc
This is what I know about my body:
Rest/naps is the only thing I can do to keep my symptoms bearable. Anything else I become sicker. Light chores (1 or 2) a day is just keeps me feeling pretty sick. Any more than that and I feel horrible.
So I’m stuck until my body cures itself or the medical field comes up with a cure.
Very very frustrating and depressing. I’m a prisoner in my own body. For now
Know that you are not alone!! And I have empathy and compassion for you!!!

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1 reply
dloos | @dloos | Apr 13 10:34am
In reply to @diverdown1 "I hope it helps too. Keep us posted." + (show)
@diverdown1

I hope it helps too. Keep us posted.

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My LDN med came quickly, and I took 1mg last night. So far so good. I know that is a very low dose, but I had no reaction, so that is a WIN for me.
I’ll keep you posted on how the treatment goes.

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rose5 | @rose5 | Apr 13 10:44am
In reply to @barbarabell "I’ve had LC for over three years. At this point, I might have a really good..." + (show)
@barbarabell

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.

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Wow!! A hike! Even for an hour is amazing. Having good weeks and bad weeks is encouraging.
I’ve had long Covid for over 2 yrs. Still stuck in the resting/napping stage. Do anything and I pay.
I remember when I was beginning to get better from having morning sickness it was the same thing. A good day and then a couple bad days…….
So hopefully I will end up like you. I can only pray

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rose5 | @rose5 | Apr 13 10:47am
In reply to @rose5 "Well, I have had Long Covid for 2 yrs and 3 mths. I do have quit..." + (show)
@rose5

Well, I have had Long Covid for
2 yrs and 3 mths. I do have quit a long list of symptoms.
I also have these thoughts of what to do. Rest, light chores, etc
This is what I know about my body:
Rest/naps is the only thing I can do to keep my symptoms bearable. Anything else I become sicker. Light chores (1 or 2) a day is just keeps me feeling pretty sick. Any more than that and I feel horrible.
So I’m stuck until my body cures itself or the medical field comes up with a cure.
Very very frustrating and depressing. I’m a prisoner in my own body. For now
Know that you are not alone!! And I have empathy and compassion for you!!!

Jump to this post

My worst times of feeling sick are in the am and stating about 3:00om.
So I only have about 5 hrs a day that if I rest my symptoms are bearable.
I’ve had LC for 2 yrs and 3 mths. 🙁

REPLY
dloos | @dloos | Apr 13 10:49am
In reply to @barbarabell "I have the same problem. I cannot take SSRI medication at all. I want to try..." + (show)
@barbarabell

I have the same problem. I cannot take SSRI medication at all. I want to try LDN but I’m worried I’ll end up disappointed because of side effects. My main side effect is bad migraines from SSRI meds. Is anyone taking LDN who also is a migraine sufferer?

Jump to this post

I’ve been told I may have “visual” migraine, or “silent” migraine because I have visual disturbance but not pain.
I have pretty continuous rotating lights in my peripheral vision and blurry vision. I’m not convinced it’s migraine, but I have tried a couple migraine meds that didn’t help.
Anyway, I’m giving LDN a try.

My opinion from the beginning has been to try everything. It’s exhausting and disappointing but it’s all I know to do.

REPLY
monarchbfly | @monarchbfly | Apr 16 12:37pm
In reply to @gerdi "So true, this group really helps. Had an appointment with a neurologist today who squarely told..." + (show)
@gerdi

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?

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I have similar symptoms, including POTS. My neurologist said my symptoms are similar to the data coming out of Northwestern University. A few of my other doctors gaslit me before this and I had none of it. Go find another doctor. I had to go through quite a few. The ones I found that are open to LC and LVS have significantly better college education (Yale, USC, UCLA, etc) than the previous doctors. Go shop for one based off of their educational profile and where they interned.

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