Post Viral fatigue

[fatgirlswims]

I’ve been diagnosed with this. I feel absolutely physically dreadful and quite emotionally exhausted I’m struggling to come to terms with this diagnosis and my future recovery. I know it can turn into ME CFS and have many of the symptoms.

I know this sounds a bit of an over reaction but I’ve gone from living life to a sad person who stays mostly in bed or goes to work.

I’m now recovering but I quite deflated.

I had a virus at the start of May of the back of a long haul flight that took three weeks to shift. I had week of feeling ok then got another virus - both Covid I think.

Any one else had this and recovered? I have a holiday to go on!

If you don't know anything about it, read up on pacing. The only difference between CFS and PVF is the length of time it lasts (over 6 months, I think).

You need to pace to give yourself the best chance of recovering. The "boom and bust" cycle of overexertion (often caused by attempting "catching up" on housework, errands or socialising) and having to rest up afterwards, is what sends the condition on a downward spiral. Be honest with yourself about what you can manage and reorganize your life/lower your standards as necessary to accommodate where you're at. At its worst people can be bed bound with it and die of multiple organ failure. Even if you think how you are now is miserable, it could be a lot worse, so focus on pacing and maintaining what you've got.

Once you've reached a sustainable equilibrium look into graded exercise therapy. "Exercise" with this condition means anything, any movement, other than resting. If you're lucky you'll be able to gradually increase your baseline activity level this way and hopefully eventually make a full recovery.

Thank you -@AlstromeriaI’ve read up on it a little. I will have a look more specially at pacing.

Sorry you're dealing with this @fatgirlswims

@Alstromeria has explained stuff really well. I was diagnosed with long covid last year and felt much the same feelings as you describe. For a while I was essentially bed bound but through a combination of pacing and getting treatment for a related issue I'm so much better now than I was this time last year. I'm not back to working full time and running 3 times a week like I was previously but now those things seem like possibilities whereas they didn't before.

I found the Hope Programme https://www.h4c.org.uk/ helpful (kind of mindfulness/CBT based) and had a lot of help from the long covid team OT. I also use the Visible app for help with pacing. https://www.makevisible.com/ Comes with a band which constantly monitors heart rate and gives notifications when you're overdoing it so you can take a break. Also helped me to recognise my POTS which was a bonus. There's a free version too.

As for holidays, I had to accept things would be different to usual. Our normal ones involved lots of activities and whole day hikes which just wasn't possible. I actually hired mobility scooter so I could do some days out but not strenuously, then come home for a kip before dinner sort of thing.

I'm wittering and probably not being very coherent sorry. I'm at the tail end of a fortnight long migraine and the brain fog is real! Hope some of what I've said helps you @fatgirlswims.

It is absolutely devastating so I don’t think it’s an over reaction. I went from having a life to having none at all. I have recovered some functionality but I’m nowhere near the level I was before.

please make sure the doctors have explored all other illnesses - women especially get dismissed way too easily. They need to have thoroughly checked your thyroid, iron levels, vitamin levels, auto immune conditions.

I’m very slowly recovering from post viral fatigue following a Covid infection last November.

It’s awful and I understand how you feel. I was terrified it would end up being CFS. But if you feel you are recovering- even a bit then that is a good sign.

Pacing is the most important thing. Find out what you can do and then hold at that level for a long time (like a month) then slowly add in a bit more.

Anything that helps calm your nervous system is good (we can be stuck in sympathetic drive and need to get more parasympathetic drive). So meditation. Yoga breathing etc.

I found acupuncture helpful…

And a low histamine diet (so avoided high histamine foods such as tomatoes, avocados etc).

I am much better than I was but I still can’t run or do any high intensity exercise. I used to run about 4 times a week.

I had long covid in 2020 which was never completely incapacitating but bad enough that at it’s worst I would find walking 200m more than I could handle without paying a price, I went to bed at them same time as my 3yo every day and I had to put a chair next to the sink as I couldn’t stand up long enough to make dinner.

I had a friend who died from CFS and honestly I was really scared about getting worse.

It was up and down and I probably pushed myself too hard on numerous occasions. It was a very gradual process of recovery and the worst wasn’t actually at the beginning.

But I’m pleased to say 5 years on I’m currently training to run a half marathon and am more-or-less completely recovered - I don’t think it is ever completely ‘gone’, I’ve had a couple of small flare ups following viral illnesses and i am very conscious about listening to my body now and not over taxing it.

There are of course many people who have suffered much more and haven’t recovered from long covid / PVF but many more who have so I just wanted to give you a positive story as I know how scary it feels.

Thanks for sharing that @Catingle - I was just contemplating signing up for my first half marathon when covid hit me (for the umpteenth time 🙄) and didn't sod off again like it had before. Your post gives me hope that I will get back to that so really appreciate it

Placemarking

Some of these stories are heartbreaking - thank you for sharing. I’m assuming that wha to have is long covid.

I was active and swam a lot- 5k per week Haven’t been since march. Feel guilty for not exercising

I cannot explain how I feel either but this morning I felt terrible but I feel better now. I have been out in the car today alone to the GP who had ordered blood test to be done in two week to ensure the infection has cleared! First time in 10 days! Yesterday I went to a shop with my mum and came how exhausted!

tomorrow I go to work after 10 days at home. I’m also due at a work dinner tomorrow night but I’m not sure I can do it.

right now my legs ache but I feel ok. I don’t want to go to bed at the moment which always a win!

Last week I couldn’t carry the washing to the washing machine!

I think tomorrow you have to pick one or the other, actual work or the work dinner. You're setting yourself up for failure (and feeling 💩) if you try both. You need to take things reeeeeally slowly. Ask me how I know 😂

Are your work aware of your situation? If not you need to have a talk with them and get them on board with a recovery plan, reduced hours, working from home sort of thing. If you haven't already then ask for an occupational health referral.

It's absolutely possible to recover. Lots of people do. At your stage the essential thing to do is rest, rest and more rest. Do not be tempted to push.

It's an absolute bastard of an illness so cry, scream and everything you need to do to cope.

Lo

Gentle swimming was the first form of exercise I “got back”’ along with some cycling. For some reason walking was more draining and running took by far the longest and it was years to really manage again properly. I don’t know if that’s a POTS related thing that exercise that didn’t involve being upright was easier?

Don’t feel guilty about not swimming - you have to do what is right for your body at this time even if that is nothing. But I get how frustrating and depressing it is when exercise has been a big part of your life.

Hello, I think I might possibly belong here.

Best wishes to everyone.

I’ve had ME/CFS for 30+ years. Right now you should rest as much as you can. Accept that you can’t currently undertake your normal tasks, don’t beat yourself up or get frustrated. Pacing is a lifesaver. Remember the mantra “No good day goes unpunished”. Even if you’re having a good day, don’t overdo it or you will pay the price. Eat healthy food, stay hydrated and lay off alcohol for now.

It’s not uncommon to feel wiped out for a few weeks after a nasty virus, and the heat makes it so much harder. Hopefully you’ll start picking up soon and be back on your feet for your holiday. Good luck!