Post viral fatigue

[Toastwithbutter]

I'm a Newby to the group,my story goes.For years I get a mild infection just like a cold coming on which then passes after a few days but I'm left with this terrible fatigue, I can't evan have a conversation with my husband without getting exhausted, this year it lasted 4 months,the first 2 months I was bed bound then I could get up for a couple of hrs then back to bed for the rest of the day.Sometimes the fatigue might only last around 3- 4 weeks up to 2 months,this year has been the longest I've had it,I'm actually dreading this winter.

I've been suffering with this since 2008 when I had Pneumonia, the fatigue lasted 10 months that time.

Does anyone else in the group suffer this debilitating illness?

[wobblybee Administrator Pioneer]

🤔It’s probably a good idea to speak to your GP about this. You may have a deficiency etc…that prevents you from making a normal recovery.

[TaraJR]

I'm not sure.

But, have you had FULL thyroid tests done? Not just a basic TSH test which doesn't tell you much. SO MANY people have poorly treated or untreated thyroid conditions.

Look in your records on your NHS app, or request copies from the surgery (you're legally entitled to them and they're free) of all your test results for the past few years. See if TSH, T4 or T3 have been tested. Post them on Thyroid UK HealthUnlocked forum who are BRILLIANT! healthunlocked.com/thyroiduk

[Toastwithbutter in reply to TaraJR]

Tara,thank you I'll try that.

[susans_brother in reply to TaraJR]

Apologies for butting in here, for I am male.

Feel free to jump to the end of this story if it's All To Much.

My partner has suffered from symptoms including fatigue for some time. GPs haven't helped much, either because they don't really believe that post-viral fatigue exists as an organic condition or because they just don't know what to do about it. J had wondered if she had some sort of thyroid deficit, but her numbers have been fine throughout.

Eventually she took herself off to a really down-to-earth endocrinologist in Harley Street, which took some planning because of the fatigue symptoms.

Quick sidebar - I'd wondered if this was a manifestation of some mitochondrial disorder (I am not a doctor, but I'm an engineer of sorts and we think we can fix anything) affecting one of the ATP pathways. We'd started J on Co-enzyme Q10 on the basis that it couldn't do any harm, and it did seem to help.

The London Doc ordered many tests, mostly in-range results, but it turns out that J had been unknowingly exposed to Epstein Barr at some time in the past. Thyroid was fine, which was a bit disappointing because J really wanted to have a reason.

He suggested two things:

1 - a little electronic device that clips to the tragus of J's left ear and stimulates her vagus nerve. This sorted out her very spiky heart rate and spotty sleep pattern. Worked almost overnight.

2 - Hyperbaric Oxygen Therapy. This can be ruinously expensive (several hundred pounds and hour from outfits that sell it for cosmetic purposes to people who have more money than they know what to do with...) but Multiple Sclerosis charities dotted around the country often have access to a hyperbaric chamber and will offer you a course of treatment for around £20 a session.

You don't need to be referred by a GP.

It's still a bit of a commitment - Doc recommended J do 4 weeks (20 daily 90 minute sessions) before deciding whether it was working for her and, if it was, another 20 daily sessions.

We have facilities near us in Exeter and Bristol, so J holed up in a local Travelodge in Exeter for a couple of months.

The results were *amazing*, and we can't recommend it enough.

Here's the thing: the HBOT people understand that it can be useful to people with post-viral fatigue and are very welcoming. GPs, however, just don't seem to know it exists.

J and I are happy to answer questions if it helps.

[TaraJR in reply to susans_brother]

when you say "thyroid tests were fine" , what were the actual tests and the actual results? Can you post them here? SO MANY patients are told they're fine when they are NOT.

[susans_brother in reply to TaraJR]

I don't have them to hand, and they're not mine, so I'd have to go seek permission... But in the meantime, I'd just observe that we chose the endocrinologist because of his expertise with thyroid conditions, and he is perfectly prepared to perform trial-of-treatment with patients who have good numbers but symptoms that suggest thyroid involvement.