What helps longhaulers dealing with Chronic Fatigue?

Posted by seidholz @seidholz, Aug 13, 2024

Having just been through a battery of tea s for my NIH study at UNMC and a visit with my GP, it turns out that there is no answer for my CF, brain fog and racing heart. I have had Covid 4 times and no real serious symptoms other than fatigue and congestion. Blood work has been normal as well as brain scans, heart tests etc.
I used ozepmpic injections 6 weeks ago and eliminated refined sugar and junk food from my diet and dropped 20 lbs hoping that would help but didn’t notice any change in the fatigue.
my GP suggested citalipram which I just started but other than than he had no suggestions. I still stopped drinking 2 years ago and was hoping to enjoy a better life and now this has gotten in the way.
Any thoughts or ideas?

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da69 | @da69 | Mar 13 2:56pm

In reply to @seidholz "I have been in the NIH Long Haul research program since 2020. I have been diagnosed..." + (show)

Learn to pace yourself and accept it....3yrs later and i am half the man i was.
I no longer can do a list of chores in one day....I break things that need to be done into doing 1 a day.
If i do too much i crash and get worn out and get so sore it's painful to just to stand up from a chair or sofa and walk.
At first i fought it, But after paying the price of doing too much i gave in and accepted it as my new normal.
Accept that you can only do what you can do.
I am hopeful as research comes along we will all be able to get back to where we were Pre Covid or at least
close to where we were.
For reference im a 55 yr old male....Who completely remodeled his basement in 2019 and i look at it now
and say ....No way could i even attempt that now.
Try to do one little chore a day and pat yourself on the back when your done.
Hang in there!!

seidholz | @seidholz | Mar 13 3:34pm

In reply to @rissanz "Naloxone? That's interesting. Does it work like low dose naltrexone?" + (show)

Wondering the same thing

Lucy | @welchllb | Mar 13 5:33pm

In reply to @seidholz "I have been in the NIH Long Haul research program since 2020. I have been diagnosed..." + (show)

I have been on LDN - the pills - for about 3 months. I have found it to be a miracle worker. I am now walking distances without breathlessness and most days, I have more energy. I moved from taking the LDN with dinner because of weird dreams and sleep disturbances and now take it each morning with breakfast. LDN has not taken care of all my Long Covid/CFS and fibromyalgia symptoms but I do feel so much better. I titrated up to 4.5 mg. I had balance/dizziness problems and gastro issues before LDN and continue to have those symptoms.

seidholz | @seidholz | Mar 13 7:27pm

In reply to @welchllb "I have been on LDN - the pills - for about 3 months. I have found..." + (show)

Is this different than naltrexone?

diverdown1 | @diverdown1 | Mar 14 7:57am

In reply to @rissanz "Naloxone? That's interesting. Does it work like low dose naltrexone?" + (show)

My apologies. I meant Naltrexone. Both are opioid antagonists and target specific opioid receptors in the brain, however, the medication, Suboxone, has buprenorphine and naloxone in it to help people coming off of opioids and is also in Narcan and used to reverse overdose.

andyegan3 | @andyegan3 | Mar 14 10:11am

In reply to @welchllb "I have been on LDN - the pills - for about 3 months. I have found..." + (show)

Please, what is LDN? Thanks.

Lucy | @welchllb | Mar 14 12:00pm

In reply to @seidholz "I have been in the NIH Long Haul research program since 2020. I have been diagnosed..." + (show)

Sorry, LDN is Low Dose Naltrexone, 4.5 mg. It's a compounded prescription.

hicopd | @hicopd | Mar 14 7:30pm

In reply to @seidholz "I have been in the NIH Long Haul research program since 2020. I have been diagnosed..." + (show)

It also helps if you can have a POTS expert help if you have postural orthostatic hypotension. They can help you with Midodrine for floppy vasculature and a low dose beta blocker to reduce the high heart rates. They are also familiar with what doses are best and which medications have fewest side effects.

carlosmayo | @carlosmayo | Mar 15 11:01am

In reply to @seidholz "I have been in the NIH Long Haul research program since 2020. I have been diagnosed..." + (show)

Sorry for the slow reply ... I missed the question.
I don't have links. Initially both Naltrexone and Abilify came from compounding pharmacies. But to save money I now take an Abilify oral solution 1 mg/ml and dose with an 4ml oral syringe - 3.5 mg/day. Camber Pharmaceuticals brand.
For Naltrexone I make up my own 1mg/ml solution with 50 ml water and one 50mg Natrexone Hydrochoride tablet (Mallinckrodt manufacturer), then again using an 1ml oral syringe take 0.9ml/day. The dose levels were arrived at through a very gradual many months step by step increase in dose to find the maximum that I could tolerate without side effects. Hope that helps, happy to answer any other questions.

sanDGuy | @sandguy | Mar 25 2:05pm

In reply to @carlosmayo "Sorry for the slow reply ... I missed the question. I don't have links. Initially both..." + (show)

I'm sorry, but I'm a little taken aback at your Naltrexone dosage. You are only taking .9mg per day?
The normal LDN is between 1.5-5mg, so I'm surprised you'd be getting any effect from that.
Please clarify, thanks!

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