Finally... Some answers

What help me was B1-B12 vitamins had real BAD brain fog getting better finally after
4 years also all the doctors for those pass 4 years would say yeah yeah and ignore me because blood test physical appeared looked good.
Ps it would take me 1/2 hour give or take to write this response just 8-6 months ago
stay strong (:-}

I appreciate the response. I'll give that a try. The brain fog isn't too bad but I do forget words here and there. I go to trivia every week and I was finding it hard to get the answers out of my mouth even though I knew that they were in my brain.
Heading to Amazon now!

Yes, well, sorry you've had to find your way to this group, but you'll see you have lots of company.
I don't think there's any kind of actual cure for this presently, so you will have to be patient, since most likely with the passage of time you will get better. While I'm saying this, I'm aware that there are some who have had this for several years, but hopefully they are outliers. (My initial bout with this in the '90s lasted two years, then simply labelled "Chronic Fatigue Syndrome")
My opinion is that, without any real cure or way of dealing with this illness directly, the best thing is to just work with sympathetic and LC-aware physicians who can help you manage the symptoms, which seem to vary wildly from patient to patient. My own suspicion is that it somehow targets any pre-existing susceptibilities or weakness we might already have.
It sounds to me like you have already embarked on this course, dealing with pain management, which is wise. I'm sorry to hear about your pain; that must be awful.
The one specific thing I might suggest would be that you might consider acupuncture for that pain, specifically. It is sometimes surprisingly effective for ailments that conventional medicine tends to shrug its shoulders at.
It also has the benefit of no side effects, and if you've never experienced it, don't be put off by the idea of the needles, as they're almost hair-thickness fine, and you really don't feel them. Many medical plans also cover such "alternative" therapies.
Years ago, we had a standard poodle with sore hips who was helped by his vet who could do acupuncture, and the interesting thing about that is that there is no question of it being placebo effect with an animal!
Anyway, don't push yourself too hard, and it strikes me that you have a very good attitude, so I wish you all the best.

I totally understand your position. My worst aggravation is listening to my husband (a physician) Pooh Pooh my problems. He’s talking dementia, age, etc. seeing a neurologist next Monday. Incidentally, my symptoms show very little with friends, but way too many at home. Good luck, all.

suef

Hi @hutchinsr. So sorry you are going thru this and know youre in the right place here. So many have helped me on my 4 yr journey and hopefully these things helpful. My post covid providers are from all aspects of healthcare and common triggers can be food sensitivities that create inflammation and reactions in unimaginable ways so a food/reaction/
symptom diary helpful to see. Also pacing is critical and slow and steady with tolerated activities seems common theme. Just repetitive motion brushing teeth or writing and talking same time can be too much and helpful noting day to day symptom changes relating to anything you do! Think hardest part is feeling well enough to do more and then dont realize over doing and crash 🙃 Give yourself grace whenever life allows. Its not being lazy or all the other words those who dont understand say. Healing on your individual bodies terms for full recovery wished in quickest way for you!🌈

Thank you! I'm taking 365 High Potency B-complex from Whole Foods w/ food. I think the B2 has helped the headaches but the heart racing and early AM vomiting continue

Thanks for the suggestion and encouragement. Much
appreciated.

Hi Sue,
Today a fellow resident (62 + apartment community) said Covid was hog wash. She said that to the wrong people. I told her not only did my brother die of Covid pneumonia (and without family in 2022), but I suffer from long Covid. Then another lady at the table said her little sister had died of Covid. She continued on minimizing it by saying people die of the regular flu too. This ignorant woman got an ear full but still lacked compassion. She is a person I do not care to talk to again.

It is so hard when you have been suffering, to have such people to deal with on top of it.

If you have not tried Low Dose Naltrexone (LDN), give a tiny dose a try. I stated at 1.5 mg and it stopped some of the constant chronic pain from Long COVID. I slowly worked up to 3.5 mg and most of my pain is gone. It has also improved my shortness of breath and gives me a little more energy.

I had few side effects but did experience extreme sleepiness for the first two weeks but it was only for an hour or so right after taking it. After that initial period, now it gives me insomnia if I take it after 3 pm. It does give you vivid trippy dreams...not scary but kind of wild, unrealistic circumstances...like sitting on top of a very high dresser watching the sky.

It works by blocking your endorphin receptor for a few hours and then your body makes extra endorphins which for me equates to a little burst of energy about 2-3 hours after I take it. And you will know when you find the right dose for your body...I worked up to 4.5 mg but felt better at 3.5 mg so dropped back down.

To @law59 —

I appreciate and want to affirm your recommendation that people keep a journal noting
(a) symptoms as they arise, and
(b) actions that might have triggered them.

My journal includes 3 kinds of actions:
1. Physical and mental effort, because I have Post-Exertional Malaise (PEM) and need to “pace” my activities.
2. Timing of medications, so that they don’t interfere with one another.
3. Timing of what I eat and when, so that the food doesn’t interfere with the medications, or cause Heartburn. (The addition of new medications has caused me to modify my diet.)

~ friedrich