Has anyone recovered from CFS or been able to radically improve?

[Justmeandthedog1]

I eat a good diet. Take vitamins. Walk when I can ( no point in walking off if you’re not going to be able to walk back, that has happened).
Don’t drink or smoke, I’ve been outside trying deep breathing as I’m hobbling around the house holding onto furniture today.
GP totally disinterested , I was diagnosed 6 years ago.
Any ideas, please?

I’m into year 8 and I am so desperate to recover. I’ve missed a huge chunk of DC’s childhood & friends have drifted away as I can’t socialise. It’s miserable.

I’ve heard of people paying for prescriptions of LDN but I don’t even have the funds to try. Oxygen therapy has also been useful for some people.

ldnresearchtrust.org/dickson-chemist

www.healthrising.org/blog/2022/12/27/hbot-hyperbaric-oxygen-chronic-fatigue-fibromyalgia-long-covid/

some people discussing possible recovery on these threads. I haven’t found anything that works. I’ve spent ££££’s in the past on supplements, hypnotherapy, acupuncture and I can’t see any change.

www.mumsnet.com/talk/am_i_being_unreasonable/4683893-to-ask-for-mecfslong-covid-recovery-stories

www.mumsnet.com/talk/am_i_being_unreasonable/3902160-Chronic-Fatigue-Syndrome?reply=96373977

I’m sorry you’re dealing with the same crap. It’s utter misery, isn’t it?
Thank you for taking the trouble to post so many links, I’ll start reading through them.

Hi - yes I’m in a similar boat - I do all the good stuff and def give up on cure but try best help as been my cycling.
Low and start slow then strengthen legs day by day. Also the fresh air and just getting out there makes u feel wonderful.

Its great that graded exercise therapy worked for you. Sadly it actually made me much, much worse -as is the case for many people with CFS, that’s why it is no longer recommended.
https://www.bmj.com/content/371/bmj.m4356

Ugh be interested to know if anyone has. I'm a couple years in and feel like if I had 2 years off from any form of responsibility or task whatsoever that might just do it.

It's awful

Yes - payed privately for a load of tests - discovered several undiagnosed deficiencies, including B12. Now get 3 monthly injections of B12 and continually supplement Vit D/Folate & Vit C. It turns out I have some problems with absorption with resulted in CFS symptoms however GPs haven't ever really been able to explain why. I do think a lot of CFS patients have undiagnosed B12 deficiency, so worth asking your GP to check. Oh and also the tests found at some point in the past I'd had mono (glandular fever) but weirdly I don't know when this was.🤔GOOD LUCK OP. 💐

I already have B12 injections and a double dose of Desunin 800 for my vitamin D deficiency, and I’m on folate… I haven’t tried vitamin C yet, I will add that to the list.

Any other deficiencies @FortheBeautyoftheEarth ?

I hear you OP. Very similar situation.

Today I feel pretty good so will put my two pence worth in.

I think you need to adjust to the illness and accept each day as it comes. It is never easy and all you can do is deal with what is and hope for the best (a cure one day or some more Goverment support/investment).

In the meantime cherry pick the bits that help you.

• find a gentle hobby
• make your environment as joyous as possible
• try get daylight everyday
• prioritise vitamin D
• eat a healthy balanced diet
• try to manage your weight sooner rather than later. It is hard to loose if you can't exercise
• try maintain friendship...even if you need to find new ones with fellow sufferers who understand your illness
• try to laugh everyday
• drop any feelings of guilt or shame that you may feel about being chronically ill (this has been hard for me)
• learn to ignore ignorant people and their opinions on your illness
• pick your battles
• don't spend money on snake oil

I can't tell you that you're going to recover if you just think positively enough or try a bit harder. That is utter bo*lloc£5.

I can't tell you I know anybody who has fully recovered. I can tell you that I've managed to accept this illness for what it is and adjusted my life to the condition. I've (slowly and reluctantly) let go of the vision I had for life and creating a plan B.

I wish you the best of luck navigating this illness and finding your new happy.

Yes, I’ve drastically improved. I can’t really point to any particular magic bullet for me unfortunately, lots of rest at the beginning and then graded exercise therapy (sorry, controversial I know!) done very gently with a very good physio. Vitamin d tablets helped a bit.

I know it’s horrible to go through, I hope things improve for you.

I’ve just signed up to this if anyone is interested.

https://www.decodeme.org.uk/

@Fellowcfssufferer this is a great post 👍 I got caught up In the snake oil…optimum health clinic (no clinical basis,
no medical qualifications,
lots of tests no results), rewire (fine but not game changing), DNRS, nutrionists,
fatigue experts etc acceptance is key and ur right u cannot will urself better. I’d say light exercise has been my saviour -
not too much but just fresh air and movement massively helps. I know it doesn’t work for everyone but I started v v slow and built up. I like your realism - I will never be 100% but maybe I can be happy on 60% better than nothing.