The key to cfs recovery?

[MrsGxx]

Hi, I was diagnosed with cfs but a very mild case by my endocrinologist

I don’t suffer pain, just headaches, tiredness and the fatigue part 😬 it’s been nearly 7 months now and at first I burried my head in the sand & did stay in bed without even getting up I now have a blood clot. Since my diagnosis, I have been trying to get out the house every other day for some light excersize. I feel the effects a day or two later. 😏 I’m wondering if this is bad or is it good to excersize?

Also feel like I can’t wake up in the morning, I want to just sleep, sleep, sleep I have to force myself enough is enough, wake up!
Once I’ve done that I’m fine. I also have light headedness. Does anybody else suffer this but mildly like me?

CFS sufferer here for a decade- not an expert by any means but I’ve been at all levels on the spectrum, currently I’m severe and bedbound.

If only there was a magic way of recovering (I’d sell my house even my DH for it ). The best chance of improving symptoms and either recovering or at least stabilising is to pace yourself. Only do what you can within your limits, DO NOT PUSH! That’s actually vital and if you google it any ME charity and other sufferers will say the same. You are likely to end up in a relapse and getting more severe if you constantly exceed your capabilities.

I know some people with CFS who can manage some gentle exercise (yoga, small walks etc). But it’s always done when they feel up to it and without going over their limits. If you can keep the post exertional malaise to a minimum then chances are it’s ok. If you are finding it is getting harder to recover from each time you are probably doing too much. Don’t force yourself out if your body isn’t up to it- always listen to it. It’s abour learning what you can tolerate and having adequate time to rest.

Also, it’s shit. Sorry you also have it

Didn’t see your second post. Only 25% are apparently bed/housebound, most people fall in the moderate category but some do suffer ‘only’ mildly. I did for a while. If you can learn to pace and rest over time you may be a lucky person who recovers. The highest chance of doing so is in the first two years.

So basically it’s do what your body tells you?
Some days I get some energy to do things but not much, then I’m down again 😫

💐 also, thankyou for your advice. It’s all so hard to take in. The only ilnesses ive ever had I’ve recovered from. & I was never really poorly. The thing that makes this so much harder is my little boy x

I find that resting between each action helps, eg., do dishwasher, rest, do laundry, rest. Also I have berocca everyday. It is not the complete answer but helps me to function.

Thankyou, I will do that. Any advice on any vitamins I should take?

It must be exceptionally hard to deal with when you have kids, because obviously they don’t work to a schedule! But basically yes my experience is rest when you can, break things down into smaller chunks, delegate if possible and listen to your body. At the mild end of the scale you probably will have some days which seem good and some which seem awful energy wise; it’s about trying to manage doing the same amount on both to avoid the peaks and troughs.

I mean I say all this but I’m terrible at following my own advice The only way I have ever improved though is to pace and rest. When I’ve overdone it I’ve ended up bedbound like at the moment.

Some people do find that alternative therapies and things like CBT can help. In terms of vitamins have you had bloods done? They may flag up deficiencies that contribute to the fatigue. There is a lot of debate about which supplements to take but ones that often seem to get mentioned on forums and support groups are things like vitamin D, vitamin b12, coenzyme Q10, iron and magnesium.

Thankyou for your advice, I’m trying to Get out when I can, I have had a bit of a better day today, managed to go and see my friend for a coffee I was only out for around 2 hours, and my eyes feel like they’ve been dipped in chlorine 😬 I’m now cooking tea, and I’d really like to go to the bingo with my sister this evening but I feel like that may be overdoing it and I know il take days to recover and have a bit of energy again.

The days I don’t have much energy is it visable to go out or do something or just let my body rest?

I have self referred for cbt but the waiting list is quite long so it’s waiting to get a place.
It’s awful being bed bound. Can you not physically get up? Or you can but have no energy to do anything? Sorry for all the questions.
It’s really hard to listen to your body wanting to rest when you just want to go out or do things.

is it worth getting my bloods done again to see if I am deficient in anything? I know I’m low in vitamin D and my GP gave me 20,000iu twice a week for 7 weeks and I’m nearly finished those next Wednesday, and I was told to take a daily top-up.

You can ask them to do your bloods again and see if the vitamin D count has improved. Many people with illnesses like ME and fibromyalgia function better when they are near the highest end of the range, rather than just being within it.

Listening to your body is very hard and trust me every person I’ve ever known with this illness messes up sometimes! It kind of goes against everything we subconsciously think to just rest and give into illness rather than push on and actively fight it. A lot of people who have ended up getting worse have found themselves in that position because of it though (me included) and once you get low down the scale it takes a long time to claw your way back up. Being bedbound is unbelievably rubbish and I think I’ve spent about two years of my life like it in the past decade; shortest spell was 5 months and the longest was 8. This is my worst ever crash so will see how this one fares!

I don’t know if you have Facebook but there are some great and really informative CFS groups on there. I’d recommend The ME Chat Room and Chronic Fatigue/ME- increase awareness and understanding. Lots of knowledgeable people all in the same boat.

Some people do recover and others regain a good quality of life so don’t lose hope. It’s not how I expected to be at the start of my 30s but I always hope that next week will be better

Oh and you asked about being bedbound. My body has basically shut down, at least that’s how I describe it to my healthy friends and family. I can get to the bathroom and I can eat as long as I’m propped with pillows but it’s like all my energy has been sucked out for anything else. I’m too weak and tired to do much even mentally so I rest about 95% of the day

So glad I found this thread was just coming on to start one.

i have recently been finally diagnosed with CFS after nearly 10 years of struggling with fatigue, aches & pains & persistently low Vit D levels. I think i have had t mildly for most of that time but a bout of shingles last year laid me low & i have never quite go back in top.

My problem with the pacing thing is that I am self employed & live alone so "resting" is difficult. TBH I was relieved when my GP finally said it was this as I really thought I had early senile dementia the old brain fog is so bad most days.

One of my jobs is as a dog walker which I love & have one of my own so I am trying to reduce the hours I walk each day. I am doing some other part time work which is less physical so am trying to build that up.
Any advice on how to keep a roof over my head whilst I plan my recovery would be welcome- life is pretty shit at the moment,I am so worried about the near future.

Really sorry to hear about your health. I was diagnosed with ME when I was 19. I was very unwell and literally housebound for 2 years. I had to drop out of university but went back a few years later and graduated with a First. I spent most of my twenties and early thirties unwell with various ME related illnesses and was unable to pursue my dream career which devastated me. I’m now 41 and ME has become merely 20% of my life. I work PT and have two children and live a pretty normal life. I still have to pace myself , my immune system is rubbish and I simply don’t have the stamina of others. I just wanted to share this to let you know it’s possible to recover and hopefully you’ll have a healthier future. Equally I know how desperately frustrating and difficult it is when ME is bad and it can be so depressing. Pace yourself, don’t over do it, rest rest rest. Get your vitamin B12 levels checked, I have a shot every 3 months.

@Frolie I love stories like yours. Gosh I hope in 10 years I can say it’s only 20% of my life! I do think- hope- that most people see improvement eventually even if life isn’t back to pre illness quality. I’ve had really well years but my body has never sustained it sadly. I’m so glad your life has turned out so positively

@MissMarplesBloomers it is very hard to keep working with this illness so many people do end up either reducing hours or giving up. Another shite consequence of the disease. It’s tricky to get but isn’t means tested so you could look into claiming personal independence payments depending on how much help you need in daily life. There’s a great Facebook group called U.K. Me and chronic illness benefits advice who are really helpful with how to manage financially with this illness.

MrsGxx Sorry to hijack your thread- its overwhelming isn't it at first?

I am lucky -sort of- in that I'm not totally bed bound, but since about October it got steadily worse as I have been busy with work, & despite pacing myself clearly not resting as much as my body needs. Sometimes when I can snatch a few hours I sit on my sofa & look at all the mess & dust building up & it is so frustrating, but I have needed to nap to help me keep working. Now I think even that isn't working so need to adapt a bit more.