Hello, new to the 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.

[PortiaRose123]

Hi there, welcome… as you’ll probably see this group can be very quiet due to the nature of our conditions. I’ve had ME for 6 years now but I’m afraid I’m still waiting for some wizardry! Unfortunately there’s no magic potion that makes it all go away (well not that I’ve found and I’ve done a lot of reading so far…) it is something we have to learn to manage ourselves. I was under the CFS clinic near me for a while and found some of the advice helpful but I find hearing from and talking to people with the condition to be more helpful than clinicians who are advising best practices but don’t know what it’s like living with fatigue. I found the book Fighting Fatigue to be a good place to start. I’ve also recently discovered a YouTube channel Raelan Agle, she put her ME into remission and had interviewed many people who’ve done the same. I’ve found listening to their stories comforting in the hope I can improve, and after trying some of their suggestions I am feeling a bit better than I used to. Hope these things are some help to you.

[MMBJI in reply to PortiaRose123]

Hi, Thankyou so much for your reply. I discovered the Fighting Fatigue book recently too- at first glance it does look good. I have been too tired to look at it properly yet though.

I have found a local support group and find it very affirming and lifting to be with people who get it and don’t suggest I get a gym membership!

I find it exhausts me to attend the group for a couple of hours once a week, but am so isolated otherwise, that it’s worth it.

Thankyou for reaching out, let’s keep persevering 😊

[PortiaRose123 in reply to MMBJI]

I’m glad you’ve found some support locally. It still surprises me now the feeling I get from hearing someone talk about a symptom I also suffer with, it’s as if it makes me feel I’m not just imagining it, and others are going through the same. Watching the YouTube channel has taken me down a path of researching the nervous system, vagus nerve, lymphatic drainage… but it’s a lot to take in. It’s giving me hope that my health can improve but it’s very slow going and is completely reliant on me not over exerting myself on an hourly basis. It’s hard work staying positive but don’t want it to get me down…onwards and hopefully upwards one day!

[Obsdian]

Hi, and welcome! I have a mix of things going on too as well as adhd. Adhd feels more like "me" and fatigue has affected it making me feel like someone else. I only seem to have retained the obsessive thoughts and poor attention span. I really miss the happy puppy energy that made me bound with joy through everything!

I am currently on the way waiting list for the second time for a cfs assessment. In the midst of my first try on the waiting list I got dysautonomia so was rejected due to new unknown symptoms. So that's figured out and back on the list.

As per pacing. It has felt like truly awfup advice. My GP gave no me advice, it was the lady in a PIP interview that told me to pursue it. It haw taken me MANY months of figuring it out with shifting levels and triggers of fatigue but pacing does actually help.

I'd not say pacing makes me better, I'd describe it as keeping me feeling as good as possible, which has become very important for me. Currently enjoying my best time in a long time which has taken me months to achieve... But I'll am still home 98% of the time but capable of going for a walk now and then. Nowhere close to where I want to be but I find regularly pointing out the progress to myself helps especially as I feel like I never reach what I want to be doing.

Doing give up on pacing, result take a long time and symptoms can be a roller coaster so results are movable.

[peege in reply to Obsdian]

I too have found pacing the best way forward. Itx so easy to overdo it (as I have today 🙄😴 so I know tomorrow will be in bed mostly). I do find being in nature uplifting, it feels good to sit in the local parks and simply look, at trees, birds etc & consciously breathe. I do take 100mg of Co Enzyme Q10 daily, sometimes twice daily if I've overdone it. P

[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.