Any experience with Post-exertion Malaise (PEM) symptom of Long Covid?

Posted by ann728 @ann728, 4 days ago

I am diagnosed with Long Covid and symptoms include fatigue, insomnia, and post exertion malaise (PET). I can’t find much research on PET especially the treatment component. Anyone with suggestions on developing a quality of life with pacing strategies?

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@bmekdeci

Your comment about feeling "poisoned" is so interesting. I was diagnosed with ME/CFS in 1984 and had two bouts of Covid in one year followed by LC. Through it all, I have felt like I was poisoned. Other ME/CFS patients have reported this also.

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That is the only word I know to describe how I feel in the mornings. Some mornings are worse than others and it is usually due to overdoing the day before, which is not really overdoing but it is now that I have this virus in my body. I believe that it is due to inflammation. I actually believe that most autoimmune diseases are a product of inflammation. I watched a video of a doctor describing adrenal fatigue. It was spot on as well. I will try to find the link. It is a YouTube video. It is almost as if the body has just said "enough!!" The PEM varies. As an example, I went to an appointment last Thursday. I usually do not go many places because I just do not feel good. So, went to the appointment and woke up Friday morning feeling really "poisoned." That is the PEM. It is brutal as you know.

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Hi, I have this condition as well. I saw a long COVID Dr., last week and I will begin rehab to address this issue along with heavy leg syndrome. I will post how that goes in the next several weeks. It has been the most troublesome outcome for me. I developed neuropathy as a result of long COVID as well. I think it's interesting that I never lost my sense of taste or smell. It has been about nerves in my body and inflammation issues.

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@kayabbott

I've had PEM for 2 years now, but it is slowly getting better. After a year of not enough exercise, I started with light weights, slow reps, and gradually worked up walks. I thought of getting a trainer at the rec center, but I started with lifting weights 35 years ago, so slow is good. I don't know if insurance companies cover PT for PEM strengthening.

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I know that Medicare and my backup Blue Cross to pay for physical therapy which includes weight training for PEM and whatever.

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@bestseller2025

Hi, I have this condition as well. I saw a long COVID Dr., last week and I will begin rehab to address this issue along with heavy leg syndrome. I will post how that goes in the next several weeks. It has been the most troublesome outcome for me. I developed neuropathy as a result of long COVID as well. I think it's interesting that I never lost my sense of taste or smell. It has been about nerves in my body and inflammation issues.

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I'm on 26 months now and the pem seems to have gotten worse complicated by benign tremors which I had but not a great deal and is now a lot more. I've tried PT for walking with a little success but for weight not so much and I was going to the gym for five times a week before the pandemic. Over at pem is one of the most common effects along with brain fog. So I really have no advice.

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@diverdown1

I have had long COVID for 3 years. PEM is the worst and it is a big symptom I have experienced. I wake up feeling poisoned and that is inflammation and PEM. I have taken Vyvanse (ADHD) medication for many years and it does help. I do not know how it helps, biologically, but when I wake up, I drink a full glass of water, mixed with Emergen-C, take my Vyvanse, Cymbalta (lowest dose 30 mg.) and Gabapentin. Within an hour or so of taking my medications and hydrating, I am able to do some things. The issue is that this is everyday. I know that if I do too much, I will pay for it the next day. I have to live in the day and do what I can and try and not think too much about tomorrow. That being said, it is always in the back of my mind. You would definitely want to make sure you have no heart issues if you are taking Vyvanse. I know that people also take Wellbutrin for ADHD, however I have no experience with it. I got so depressed and hopeless, that my psychiatrist suggested the Cymbalta. It is an SNRI (serotonin norepinephrine reuptake inhibitor). It has helped. Hang in there!

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Wellbutrin is also an SNRI I took it for a few weeks and it seemed to give me energy but it also inhibited my sleeping so I stopped. Don't go by me I'm very sensitive to medication's and supplement now.

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@bestseller2025

Hi, I have this condition as well. I saw a long COVID Dr., last week and I will begin rehab to address this issue along with heavy leg syndrome. I will post how that goes in the next several weeks. It has been the most troublesome outcome for me. I developed neuropathy as a result of long COVID as well. I think it's interesting that I never lost my sense of taste or smell. It has been about nerves in my body and inflammation issues.

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Sending healing hope as you begin with a new physician….thank you for sharing.

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@roadog66

I'm on 26 months now and the pem seems to have gotten worse complicated by benign tremors which I had but not a great deal and is now a lot more. I've tried PT for walking with a little success but for weight not so much and I was going to the gym for five times a week before the pandemic. Over at pem is one of the most common effects along with brain fog. So I really have no advice.

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Thank you for responding. Lots of people in your situation, let’s hope each of us finds a way to have a quality of life.

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Ann...I also struggle with fatigue. Not daily but it comes and atkes me out for a couple of days. I also struggle with insomnia. The long COVID DR. prescribed 300mg. capsule of Gabapentin, one capsule a night and a compunded capsule of 1.5mg of Naltrexone. It's compounded because it's not yet approved ny the FDA. I took both for the first time last night and slept the best i have in several years. Now, I felt groggy this am and needed more sleep. Because it's Sundy, i did sleep in. I will take the same dosage tonight and if i continue to feel sleepy in the am hours, i will consult with the DR., over dosage. But it sure beats the sleepless nights.

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@bestseller2025

Ann...I also struggle with fatigue. Not daily but it comes and atkes me out for a couple of days. I also struggle with insomnia. The long COVID DR. prescribed 300mg. capsule of Gabapentin, one capsule a night and a compunded capsule of 1.5mg of Naltrexone. It's compounded because it's not yet approved ny the FDA. I took both for the first time last night and slept the best i have in several years. Now, I felt groggy this am and needed more sleep. Because it's Sundy, i did sleep in. I will take the same dosage tonight and if i continue to feel sleepy in the am hours, i will consult with the DR., over dosage. But it sure beats the sleepless nights.

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Wow! That is exciting news. My physician is big on supplements, I will check this out with her. Please let me know how it goes. Good luck…..or better yet…sweet dreams!

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I found the link to "Adrenal Fatigue" I brought up in my post and feeling poisoned. It is below.
https://youtu.be/ViBCHO6FSiI?si=r5Vslyu61P3KV9yk
I hope all are okay today.

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