? Post viral fatigue - advice/reasurrance needed

Thank you for your reply Andy, just to clarify I didn’t go out for 3 nights, just the one 😂 I just stayed up past 10:30pm! That’s late for me now days! Lesson learnt on that part for now early bedtimes all the way - the worry I feel about this I’m sure probably isn’t helping me either, it’s just so hard to go from being on the go constantly to just having to stop because I physically can’t do it, my hoover hasn’t had this much rest in years! 

Sam 

Oh, well thats not so bad then. It is very hard to come to terms with, especially if you are a busy person. You need to make sure you build up to things and get lots of rest. I don't have kids so its eassier for me i suppose.

I think that’s the part I’m struggling with most, plus googling really doesn’t help, I’ve convinced myself it’s so many different things but gradually I am trying to accept it for what It is and take each day at a time and realise that I will never know the exact virus that started all of this, I’m sorry to hear about your diagnosis, did it develop from PVF? My best friend was diagnosed with ME when we were 18, and I know how much of a struggle day to day life can be for her.

Sam   

I had a real bad flu for three days then the symptoms slowly came on. I knew relized what was wrong though because i have 4 other family members with the illness. I would always have doubts that i was even ill though so would start thinking i should be out working  but then you have a bad spell. Ive not worked in 3 years and dont know how i would ever hold a job down but the government seem to think i am fine to work.

This is very interesting and shows how we all differ. I have been into healthy eating for well over a decade although i dont follow a rigid healthy regime i do minimize junk. I gave up cows milk years ago as well. I genuinley have not noticed any difference. Saying that i do struggle to leave out bread. It is too easy to just make a sandwich when you cant be arsed to make a meal. Who knows, maybe i would feel a bit better to go the whole way but it's not easy.

Hi Andy. Yes agreed, it's quite difficult to give up what we crave especially when we are ill and our body is telling us to fuel, bread is a big one for me also.

I thought I was a healthy eater because I was not having cakes everyday, I was making dinners from scratch and lunches involving veg and healthy snacks but when I really looked into it and broke it down I was still consuming unnatural foods of some description i.e a muesli which I thought was good because I put fresh fruit on, but the so called healthy muesli has some form of sugar in, i'd then have some wholemeal bread, but looking at the ingredients, still full of stuff our body doesnt want, some nuts that may have some flavouring etc etc. I would have a regular drink also, thinking a glass or two of wine a few nights can't hurt me.

This is my theory but I think a lot of m.e is caused by long term overload of bad foods (even the ones we don't think are bad) and us m.e sufferers maybe a bit more sensitive to the toxins which clog our blood, sit in our organs and joints and mess with our heads. I'm sure there's a lot of people that would disagree with this, but I'd challenge have they tried really looking at what goes into their bodies, have they tried a fully clean diet? It's hard to commit or discipline and give up the comforts and I fully get that, but I swear by it personally and I'm still in the early days of realising this and I still fall off the wagon but get back on sharpish when I go back down hill. 

If you did give it a go Andy and look up some clean eating recipes and go for it fully, it would be interesting to see if you find an improvement, it normally takes 4-5 days for me.

But to add to my essay (apologies) I did only find out 4 years into my M.e that I had a food allergy which helped dramatically when I cut it out, apparently around 30% of M.e sufferers have food intolerances according to a scientific study that was done, so any oppurtunity I have to mention it to people I do.

 

Hello.

It is certainly a mine field but as my illness is in my family i am very sure it is not down to food but a healthy diet is essential for anyone. I always have whole oats for breakfast, i use oat or nut milk and i only ever put fresh fruit on it if anything at all, oh or some nuts if i have them. I say stick to what you know so if you are certain about the diet you have then stick with it. If its true for you then that is the only fact that matters.

Yes definitely helps me and many others. I think its always good to share positive findings incase it helps others. 

I find there's a lot of advice to take rest or certain recommendations for medications but a lot less discussion on the diet so I'm always interested to talk about this topic and get some experiences and opinions going.

During and after christmas just gone i was feeling awful, i knew it was too much rich food so i cut out all meat and was eating much better. The digestive issues i was having just about cleared up in no time. It is all about listening to your body unfortunatly when you have ME it isnt so easy to understand what you need or should cut out.

I just made myself a real nice spicy soup, so easy and healthy. I put hot water in a pan, Grind up garlic and fresh ginger, put that in the water then just add spices, diced mushroom, chilli, soy sauce, spring onion and some frozen corn, loose not on the cob. You also grind up about a third of the corn to add in, helps thicken it, you can also add some corn flour to thicken it. Umm and i put in some quinoa. You can use whatever you like really.

Hi Andy,

I have been off wheat and dairy for about 20 years now. Appreciate you seem to have a family that is more susceptible but, changing diet habits can help. When I'm being good, eating less rubbish, i do have a slight break from symptoms. Last night i had a pudding of dairy free/wheat free choc sponge and custard. It felt like my body was fizzing! I couldn't move and struggled to get up to bed. The only other thing that possibly contributed was too much screen time. I watched a couple of hours on Netflix.

Giving up wheat could help you but, definitely look at how much sugar too. Not saying for a minute it's a cure but, every little helps.

Beverley

Agreed, its about listening to your body and monitoring it. The soup sounds good Andy.

Yes the lymph node thing is horrible Sam, it's just a constant reminder that you feel that your immune system is on overload and wants whatever it is to stop. Do you get any palpitations or a squashing anxiety feeling in your chest? 

Being a nurse and a having a child must be hard when your dealing with the symptoms so I can see why your desperate to get it sorted especially because it's early days. It's frustrating to go from healthy and active to ultimate fatigue and helplessness.

Good that your healthy eating. I did a diary for about a year I really couldnt work out if it was or wasn't food but I had such a gut feeling it was. So did an intolerance test and found that cows milk was given me all the symptoms of M.E. The nutritionalist afterwards advised she comes across a lot of people that have "m.e" and it ends that a certain food like dairy or wheat that is having autoimmune effect on them rather than digestion issues. I would never have worked it out myself because I also have an issue with vanilla and coconut oil.

There's some more research being done now as they have started to see a connection with the effects of food and how our body isn't converting it to energy properly, but I think the challenge is everyone responds differently so must be a scientific nightmare. 

Regardless, whatever it is that's causing your issue I hope you get to the bottom of it.

Sophie

 

Thank you for your reply Sophie, yes since the onset of this I have had a few occasions where my chest feels tight and there’s a bit of pain in the middle, I’m pretty sure it’s because I’m so anxious about the whole thing, and worrying constantly that I’m not going to feel like me again, every day I tell myself I’m going to be positive and not let it get me down, first breakdown of the day happened at 8am whilst getting the children ready for school. It makes me feel like I’m such a pants mum right now and with the summer holidays round the corner I’m dreading how i’ll cope, but i know that attitude won’t help, I need to put my big girl pants on and accept it for what it is at the moment - take it day by day and use the help that’s around me 

Sam 

this is a great observation !!!!!!!!......

I ve also noticed  worsening in my symptomps when I eat  junk and do not watch what my diet ....big time

i feel much better when I eat lots of greens ,drink "green" smoothies etc....system is not burden with digestion etc