Connect
Post Exertional Malaise
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???!!!
Like
Helpful
HugInterested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.
Connect
@kyrazpollet
I relate to everything you've said and I'm a female who is 83 years old. I've been managing my symptoms with supplements, (mostly Amino Acids) for 5 years now. The PEM does not get better over time. For more information, please visit the free YouTube Channels of: Broken Battery and the Bateman Horne Center and the site of Gez Medinger (he's one of us).
Please don't over-do your walking...as you will discover, the doctors are not aware of our impossible task of 'exercise' and the damage it can bring.
Oh, gosh...there is so much I can say. If you can see my reply to Vostie below, you'll learn more. I'm currently experiencing a bit of a PEM crash and am fatigued with brain fog to boot.
One of the best things I do for myself is twice-daily YogaNidra sessions with Ally Boothroyd on YouTube (also free). When you visit and read some of the comments, you will see that there are A LOT of people with L.C. who are getting relief.
My best to you.
Pam
Hello, Betty Jackson and Everyone else,
I know exactly how you feel - Post Exertional Malaise is THE WORST and what a rediculous 'name' for such a debilitating conditon!
As I've said...I'm 83 years of age and 5 years post covid. I experienced my first bout of PEM approximately 6 weeks after contracting Covid in Oct. of 2020. I'm managing my symptoms holistically. I take A LOT of supplements - mostly Amino Acids to help repair my damanged mitochondria. I also participate in (free) twice-daily YogaNidra sessions with Ally Boothroyd on YouTube. You will be amazed how these help provide energy as is managed by our nervous system.
Oh, there is so much I can share and I want to but I am experiencing a bit of a PEM crash at the moment.
However, I encourage you to visit these free YouTube Channels for A LOT of helpful information. Broken Battery. Bateman Horne Center. Gez Medinger (he is one of us). The Y.T. channels of Healing Gems and Raelan Agle are very helpful and informative.
My best to you,
Pam
@vostie so happy to hear LDN works for you too. I’ve been on it 10 years. It’s a godsend for my arthritis, neuropathy, fibromyalgia pain. Rarely need other pain meds. Helps me with mood too.
-
Like -
Helpful -
Hug
6 Reactions@db72 thanks for such a nice reply.
-
Like -
Helpful -
Hug
1 Reaction@kyrazpollet you’re welcome.☺️
@diverdown1
I am 83 years of age and 5 years with L.C. and relate to everything you've said. Thank you for the links.
Take a look at the free YouTube sites of Broken Battery and also the Bateman Horne Center. It feels good to see others talking about our condition with some compassion and understanding.
I'm managing my symptoms holistically and take A LOT of supplements - mostly Amino Acids which help repair the mitochondria which in turn provides my body with energy. In addition, I practice YogaNidra twice daily with Ally Boothroyd on her free YouTube Channel. After my morning session, I usually feel up to taking a shower. I have a hand-held device, so at the end of my short shower, I turn the temperature to COLD and spray my neck, my arms and my legs (briefly) which stimulates my vagus nerve. By the time I step into my underware, I feel just about normal and enjoy 2 (sometimes 3) hours of energy and can leave my home and do an errand or two.
Mind you, though, this is not every single day. The cold affects my body negatively. I believe I have MCAS (Mast Cell Activation Syndrom) and I take Luteolin+Rutin to help mitigate the affects.
For more help, visit the free YouTube channel of Gez Medinger - he is 6 years L.C. and offers a wealth of information.
My best to you,
Pam
-
Like -
Helpful -
Hug
1 Reaction@kyrazpollet
Sounds like my experience with Chronic Fatigue Syndrome and with LC. Listen to your body and check your hormone levels. Add more Vitamin C? I feel your pain and frustration.
I've been taking Imipramine (generic for Tofranil) - 50mg at night - ever since I had CFS. I tried stopping it when someone said it might be making my LC worse - bad idea. I won't stop it again. Theoretically, the Imipramine helps me with deeper, more restful sleep. Hoping you have a better 2026.
-
Like -
Helpful -
Hug
1 Reaction@mspaminreno
Yoga Nidra is amazing!! I, too, have practiced it with a local instructor. I don't do it as often now but previously, it got me from A to B. I highly recommend Yoga Nidra and Gez Medinger's book, Handbook to Long Covid, too. I read his book from cover to cover and reference it often,
Best of everything, Lucy
-
Like -
Helpful -
Hug
2 ReactionsThe COVID Gut Connection
In my opinion, every effect of long COVID can be traced to issues with the Gut”. Being a scientist, I totally understand breathing, and oxygen transfer. It’s amazing that most of this gas is transported bound to hemoglobin and that the CO2 transports dissolved and converts back to CO2 in the lungs. It’s also amazing that the heart acts as pump and just beats along and when it stops working correctly, we have CHF.
The Gut, however is an amazing and mysterious “system” which we don’t appreciate or understand. You eat a piece of pizza, or for me, blueberries and rolled oats, and two days later, the “gut processing machine” turns it into “Mister Hankey, the Christmas Poo”! If you are unfamiliar with Mister Hankey, I suggest watching the 1997 South Park episode.
But the gut is much more than that and COVID alters these functions in important and destructive ways. COVID creates a long lasting inflammatory and autoimmune dysregulation, effecting our entire body and these effects have a profound impact on the gut. The gut is responsible for most of our immunity and COVID impacts these. The gut is responsible for producing most of our neurotransmitters (Dopamine, Serotonin, GABA, Epinephrine) and COVID impacts these. It even interferes with the mucosal gut barrier, causing (in my opinion) leaky gut, which results in bacteria crossing the gut wall, inflammation, autoimmune issues, histamine release and infections.
The solution: Which has worked for me, since I made the change in March 2021 after living with most of the reported long COVID symptoms, (having contracted it in March 2020): A Gluten free, NO red meat, deli meat, Dairy (with the exception of Greek Yougart), Pizza, donuts, Drive through foods, or ultra processed snack, life. Initially, I had a bad reaction to histamine releasing foods like tomatoes and yogurt, (caused itching and skin eruptions like hives) but that has dissipated, so I now eat these foods. In addition, I take 1500 mg of L proline (the active AA in collagen) and one ounce of “Go Raw Pumpkin seeds” a day. At 71 and having “Old Teeth”, I grind the seeds to a powder in a coffee grinder and add them to my pasta, which is (Veggipasta Rotini from AGT foods. It’s totally gluten free and made from Yellow Pea Flower. For beans, I eat only Organic Pinto beans from 365 Whole Foods Market. Most people will not be willing to do this! My answer; try it for a month and if you see it’s working, you will begin to regain your pre-COVID life. Good luck.
-
Like -
Helpful -
Hug
6 Reactions@mspaminreno Thank you so much!!