Post Exertional Malaise

Posted by bettyjackson @bettyjackson, 6 days ago

I have always been the family "Energizer Bunny". But this was my last family gathering I can host.
5yrs of fighting long covid, since Spring 2020. Always determined I could be regular self by grit. Christmas Day I couldn't even get dressed. I didn't care if PrimeRib got cooked or not.(Which I can't smell or taste anyway) I've jumped into almost every suggested idea on this site..... supplements, etc., Skeptical relatives still don't understand. I was @ Mayo LongCovid clinic 4yrs ago, my Primary Doc is sympathetic, but Standard_Of-Care simply doesn't work for this weirdo viral invasion. Only coping strategies offered.
The whole world, millions of people , affected, but still no cures???!!!

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

sbriggs | @sbriggs | 6 days ago

i have just completed a new book (i am in an even worse situation with covid) if you keep up with these posts (this is the first time i have ever posted) i will let everyone know when i am finished. i got covid in 11/2019 when it was a 'hoax' ha! ha! not funny. i continue to be mis-treated by docs and institutions all across the country. i have another one (brain mri for long term neuropathy and dementia) anyway, my book is very informative as I have studied this thing for almost six years now and know more about it than most doctors (even ones with multiple phd's)

bettyjackson | @bettyjackson | 6 days ago

Looking forward to your experience&information !
I am so discouraged by this lack of research progress. I will not be ensnared however by the blame game.
It will not profit me.

diverdown1 | @diverdown1 | 5 days ago

It is extremely frustrating. I can completely relate. The PEM that goes along with this damn virus is the worst. Another piece is the people that do not believe or understand it. I can have a good day, where I can function and then there are days where I am only able to lie on the couch. I was always very active and in the best shape of my life when I got hit with Long COVID. Going on 3 years and 5 months now. I take medication that helps me function, but even then, there are days when I am just unable to do much. Have you heard of the web publication the "Sick Times"? Also there is a website that I follow. I will put the links in this comment. Hang in there. You are not alone and even hearing that I feel alone sometimes, but I do get so much from this site from people like you.
https://thesicktimes.org/
https://recovercovid.org/

kyrazpollet | @kyrazpollet | 5 days ago

In reply to @diverdown1 "It is extremely frustrating. I can completely relate. The PEM that goes along with this damn..." + (show)

@diverdown1 my kids don’t believe me when I tell them this is a life time thing. My arms and shoulders are so sore, I have to leave everything on kitchen counter. I do one task for 5 min. And I have to plop on couch. I can’t lift any thing more than a mug.im taking mucus pills to stop the mucus. Doc said try to work up to a

kyrazpollet | @kyrazpollet | 5 days ago

(Cont) half hour walk in the hall. I don’t drive which makes it hard to go to supermarket. Or Docs, etc.
And I’m 91 yrs. Old. I was a real robust 90 yr. Old. Walked 40 min. In AM. Worked lifting wts for 1 and a half hrs. And stretching on floor 20 min. Or more.
I am so discouraged by this weakness. It isn’t me

Suz | @db72 | 5 days ago

Hello, I’m in my 40th year with ME/CFS - (got it when I was 36). Many researchers believe Long Covid may be the same thing, but if not, it’s nearly identical.

PEM is one of the hallmark symptoms of Me/CFS as well. Navigating holidays over the decades of raising a family was extremely challenging - especially when our children were growing up. Some years better than others as the disease waxed and waned.

I’m in my mid 70’s now and when our 50 year old son and his wife come to visit for holidays they understand that I will spend most of the time in bed. They know that I may or may not be able to do much in the kitchen and are ready to take over and help.
This year I bought already prepared foods that they could put together. I get groceries delivered.

But all this took education over the years. Never be afraid to be bold and tell your family and friends what it’s like to live with a disabling disease that appears “ invisible “ to others. Find good articles to share with them. It’s frustrating because it’s impossible for others to comprehend, but it’s imperative that we protect our health .

It’s extremely important to PACE all of our activities- especially during holidays. Don’t be embarrassed by it. It’s what we have to do to survive and to still find some enjoyment in life in spite of our limitations.

Wishing you peace and comfort this holiday season. Here’s a link to an excellent organization I’ve belonged to since the 80’s that researches and advocates for ME/CFS and Long Covid. I’ve shared their helpful info with many people.
“What are ME/CFS and Long Covid”
https://solvecfs.org/

fourleaf | @fourleaf | 5 days ago

I will be trying Immunologist next year. They seem to be the ones writing the research papers.

🍀

h2998sc | @h2998sc | 5 days ago

In reply to @db72 "Hello, I’m in my 40th year with ME/CFS - (got it when I was 36). Many..." + (show)

@db72 Acceptance by others is not the issue,imo.Got to where I HAD to take control and set some temporary(meaning a couple months)boundaries with my boss.She's not living this deal.I cut back to 4 days a week working(for now)but I see my next schedule has me on for 5 days again.So I have to remind her again of our agreement.I felt better having that extra day off.I can rest and calm my mind down.What a world!lol.Hope EVERYONE here gets well.Recovery from this thing is always(for me)a crap shoot.You try things,you stop things.God Bless all and try not to worry about 'others'.No...unless they've had this,they can't possibly know how it rolls.

vostie | @vostie | 5 days ago

I have had very good luck with Low Dose Naltrexone. I take it in the morning and about 2-3 hours later, I get a burst of energy. I take 4.5 mg each morning after taking weeks to slowly titrate up from .5 mg. It initially gave me quite vivid dreams and after two weeks, gave me insomnia if I took it too late in the day ...so now I take it in the morning. I have had Long COVID since 2020 and I finally have the energy and breath to walk 2/3 of a mile every day...and it has taken most of my arthritis pain away. It does not stop the Long COVID fatigue completely as I crash about 1 pm but I can still get up most days at 430 pm and make dinner!

I hear some people are taking it in two small doses so they can plan on an energy spurt twice a day but have not tried that.

mspaminreno | @mspaminreno | 5 days ago

Hello, Vostie and Everyone Else -
I, too have had LC for 5 years. I'm 83 years of age and caught Covid in Oct. of 2020.
Six weeks after Covid, I experienced my first bout of PEM and of course it has been a roller-coaster ride with it ever since.
However, I do want to share that I learned many things about the damange to our bodies and some of my solutions are: Amino Acids to help repair my mitochondria. Luteolin + Rutin to help mitigate the Mast Cell Activation. And, the practice of twice-daily Yoga Nidra sessions with (free) Ally Boothroyd on YouTube. You won't believe how Y.N. will help restore energy.
For a lot of information, I encourge you to visit the YouTube channels of "Broken Battery" and also the Bateman Horne Center AND, last but not least, Gez Medinger who is 'one of us'. (All sites are free)
My best to Everyone,
Pam