Post viral fatigue

[Sasha22]

Hi, i was wondering if anyone is suffering from post viral fatigue i got diagnosed with it this year after being ill for months and not knowing what was wrong with me. Iv had a few good months where everything has disappeared but now feels like everything returning again. Heaviness in my leg, pain in the body arms and legs even when trying to go to sleep feel like thumping in my whole body. Constant bitter taste in my mouth like uv been ill for days and lost the taste in your mouth. Anyone who suffers from it can i get helps and tips thank you

Rest, rest, more rest and bucketloads of patience. It takes ages to recover from, which will only happen if you respect your body and its inability to bounce back from having had a virus.

PVF is also known as Chronic Fatigue Syndrome or ME. Have a look at the ME charity websites, not NHS who are currently 'prescribing' the wrong treatments.

You will know you have it, if your body presents with an increase in symptoms (usually pain or dizziness) after you have done too much. This is known as Post Exertional Malaise and separates what you have from general chronic fatigue. If your symptoms increase that tells you that you should stop doing it. Pushing through or willpower is not the answer to recovery. (Well, only willpower if you mean forcing yourself to do nothing when you really want to do more.)

If you can, I would really recommend doing a 2-day CPET at a local university with a sports science centre. It will show you the physical effects of what your body is coping with and will be irrefutable evidence of your condition. Google the Workwell Foundation, they really know their stuff.

Lastly, my advice is don't do anything until you have fully researched it yourself. Medical knowledge and understanding of PVF/ME/CFS is woeful and taking the wrong treatment path will make you worse. Ultimately you're responsible for your own health, which is shit when you're already very poorly and less likely to be able to look after yourself. But there you go.

Thank you for that those words mean alot. Im trying ti keep positive and keep going rather then breaking down. But it affects ur thinking and everything its like it takes over. NHS are ready to prescribe anti depression which i dont think are the solution. Ill have a look into what you have recommended. Thanks again

Depression and PVF are completely different, as you'll know. I can see how the presentation can be confused but there are clear differences. So try not to let them convince you that anti depressants are going to make you better.

By way of explanation, my DD(18) has had ME from age 14. She had glandular fever and didn't recover from it. There are a number of underlying causes to ME but hers is most likely post viral.

She did the 2-day CPET I mentioned and it showed that after (deliberately) depleting her energy envelope and continuing to exercise, the following day she had 42% less energy. This result is unique to ME and proves her metabolic energy system is faulty. It shows why pushing on and ignoring it is just going to make her worse.

By resting and understanding what's wrong with her, she's improved from not being able to get out of bed 4 years ago, to reliably leaving the house for an hour or so three times a week. It sounds like your function is a lot better than that now, especially if you got better for a while, so hopefully just understanding what's wrong and with the right approach, you have a high rate of recovery.

Depression, as well as PVF, is a possibility. But if you respect what your body is telling you and focus on the fact that you're rehabilitating yourself, it should hopefully give you hope that you'll be fully better again one day. And that it's a means to end rather than a new lifestyle.

The hardest part is dealing with people's attitudes tbh, but I found the exercise test results shut people up when they try to suggest DD is just trying to get out of going to school. So another good reason to try and get that done, if you can.

Its a bloody long road to be honest to recovery. And I'm not sure anyone ever gets to 100% again. I don't know if you've had glandular fever. But imagine it lasting for years and you've just about got the picture.

Rest rest rest. Seriously healthy lifestyle forever. Feed your body with what it needs.

Good luck and lots of patience.

Hi Sasha

You have had some great advice already but just to echo, resting is absolutely critical now. I was diagnosed with PVF and kept pushing myself to do more as 'surely I should be better now'. Almost 3 years on and I have been diagnosed with ME/CFS and am struggling massively to maintain some semblance of a life. Looking back i wish i had allowed my body to recover before doing too much and maybe I would have made a full recovery (some people do, especially within the first year).

I recommend a very clean, healthy diet, maybe some supplements (it's a bit of a minefield but a good basic multivitamin, magnesium and coenzyme q10 is a good base) and never ever push yourself to the point where you are struggling. Try to.stay well below that point and listen to your body. Good luck

Yes I have. In the end long term painkillers (amytriptilin) helped but I was one of the lucky ones for whom it just went (it just disappeared over about 3 days) I was ill for 9 months

Prioritise your energy. Try painkillers for the pain. When you start to feel better your muscles will be wasted so gentle Exercise

There are lots of anti inflammatory type diets online but I never tried any as I was miserable enough as it was to be honest.

I’m really sorry for anyone who goes through it, it’s pure miserable.

I have ME, most of the painkillers that can be prescribed upset me, I now take dihydracodeine, paracetamol & Ibuprofen & use CBD. Since starting on CBD, I have managed to halve the amount of painkillers I take.

I agree people dont understand as you can look normal but whats going on inside only you no. I did start of really bad with dizziness and unstable on my feet i got treated for vertigo but the tablets made it worse. Does anyone get really bad taste in their mouth like really bitter like you would when you have got fever?! If so any suggestion how to get tht yucky taste out

Just wanted to wish you luck with understanding your condition and hoping for the fastest possible recovery for you.

I had ME/PVS after a serious viral illness and was significantly disabled by it for several years. Thankfully I did eventually make a good recovery.

Lots of good current advice, I found Living Well (Expert Patient Programme) helpful but my knowledge is out of date. I'd only add - get a sunflower lanyard.