Hello, new to this group.

[MMBJI]

Hello everyone, I think my fatigue problems started when I had Steven' Johnson's syndrome in 1995. I just kept pushing through. In 2019 my asthma became severe, shielded for 14 months of the pandemic. Got covid within a couple of months of coming out of shielding. Had covid multiple times since then. Fatigue became more of an issue in 2021, started treatment for long covid in 2022. Fatigue has got worse, GP mentioned fibro myalgia, waiting to be seen by chronic fatigue clinic. Aches and pains have improved greatly since stopping statins- I don't think it's fibro since pain is much reduced. So debilitated by fatigue now that I barely leave the house, use sticks to move around indoors and a wheelchair out of the house.Looking for anyone's experiences with treatments or wizardry that they have tried! OT could only recommend pacing, which I really struggle to do as it is likely I have ADHD too and am rarely relaxed.

I have been looking into Grounding sheets, CBD, Red light therapy, hyperbaric oxygen chamber, coQ10, dehydration sachets, etc etc.

[susans_brother]

My partner has suffered from chronic fatigue for several years, and has encountered very little understanding from her NHS GP(s), or the Long Covid service to which she's been referred.

The pattern of her exhaustion had made me think that there might be something metabolic going on (I am not a doctor, but I am a software engineer, and we think we know everything...) and I'd already got her to try CoQ10, which seemed to help a little bit.

Eventually, she went to see a private endocrinologist, wondering as well if she might have some sort of thyroid deficiency. Which turned out not to be the case. There was a battery of blood tests, and one of them detected antibodies to the Epstein-Barr virus. He thought it was likely that she was suffering from some sort of post viral syndrome, and suggested two things that might help.

The first was of these was vagal nerve stimulation (using a gadget a bit like a TENS unit that slops on to the tragus of your left ear); this did two things for her - it stabilized her heart rate (which had been really erratic), and it completely cured her insomnia. Immediately.

The second was Hyperbaric Oxygen. This can be prohibitively expensive, but there is a network of Multiple Sclerosis charities in the UK which offer a 90 minute session for £20 to £25. It's still a bit of an investment; the recommendation is that you have one session, five days a week for 4 weeks to see if it works for you then, if it does, another 20 sessions before moving to maintenance of one or two sessions a week. In our case, she was sufficiently fatigued that she couldn't drive to the treatment centre each day, so she parked herself in a local hotel and only came home at weekends.

The results of the Hyperbaric Oxygen have been amazing. It now seems clear that at least some variants of post-viral fatigue are caused by disorder of mitochondria and that HBOT seems to kick-start them back toward normal function. She's got her life back.