Chronic fatigue

Sunflower mine affects my ability to think and organise thoughts. I used to love debates, but I am very limited now and can even feel nauseous. (which is why I post so little on GN.)
Pacing is really important. Will get back later.

I got a book out of the library on Brain Fog but have had too much brain fog to read it properly!

I paid about £12 for a course that is recommended to help M.E. It's an A4 ring binder, at least an inch thick, quite a few chapters and exercises. Got exhausted just thinking about it.

I have a similar condition and honestly don't even try to get others to understand. The exhaustion just whooshes over in waves sometimes.
Exercise used to be very helpful but at the moment, even walking fast is very, very hard.
Change of weather? Colder bones...
I hope you feel you can talk to your partner about it. It's probably very frustrating for you as well as it's difficult to support without maybe sometimes getting a bit resentful x

PerseverancePays just to let you know we started drinking the mix of two teas and it tastes much nicer that way. Hopefully it will help. Thank you.

PerserverencePays

As a CF sufferer of many years ,I will share a small thing that has helped with joint pain. I have read many times of the anti inflammatory effect of green tea but I don't really like it. So I started putting it in the teapot with my regular four times a day roibosh tea. The bursitis on my hip has gone from crippling to stiff but pain free, and the rest of my joints and my neck have also stopped hurting.
Anyone else have one thing that made a difference?

Just saw this. Good idea Perseverence. Will give it a try. I drink rooibos too.

Floradora9

Do any sufferers find they cannot read books like they used to ?. DD finds this a problem and from early childhood she was an avid reader. Brain fog stops this now .

I got a book out of the library on Brain Fog but have had too much brain fog to read it properly!

Floradora Yes, I have periods of not being able to read books. I can read the words, but they don’t sink in! Recently, I have lacked the motivation to even pick up a book - I always used to be a bookworm!

No, I cant read books atm and was avid reader. But I can "listen again" to books on Sounds. Can DD access anything like this?

yogitree sorry you miss your class - yoga is so good for CFS body and mind.

Your post also "spoke to me' cos I feel sad looking out at the garden and only doing little bits.

( I've done yoga for 45 years so can "do my own thing" but home alone its difficult to motivate myself so when I can I drive to the gym and find a quiet spot them have a Jacuzzi.)

Hope you can get back to your class soon.

Maybe it's easier for me at 71? I'm not ready to give up being able to go for walks again ever, but I don't have the responsibilities or expectations from when I was younger.

Do any sufferers find they cannot read books like they used to ?. DD finds this a problem and from early childhood she was an avid reader. Brain fog stops this now .

Sunflower2, my husband is in your shoes. It's a hard place to be. We miss doing things and going places together and he has all the mobile or lifting jobs to do along with walking our beloved dog. I have Fibromyalgia / CFS / Arthritis etc., and it's so difficult to plan anything because I never know how I will be! I've just had a flare lasting over 2 weeks when I've hardly been able to do much at all. I even missed the gentle flow yoga class that keeps my muscles and balance functioning. It's one of the few things I can do which I feel benefits my health and gives me joy. Sometimes I feel like people must question my sincerity, I know I probably would should the shoe be on the other foot! Pacing is so difficult if you are having a good day, enjoying yourself, or with the family - you just want to be 'normal' and end up paying the price. I'm away for my daily siesta now in the hope that I can at least pull up one or two weeds from my poor garden this afternoon. It misses me, along with my husband, family, dog and friends! I hope we all learn something through the study into the similarities between long covid/fibro/CFS. Good luck to you both x

annsixty - its still so dreadful it took so long to diagnose these days. My sympathies. I hope the knowledge means he gets the help there is, ie referral to specialist clinic. to find a "roadmap" for your D and son.

I am so pleased to discover this thread.
My 23 year old GS has finally been diagnosed with CFS this week after years of not knowing.
It is a relief to know.
He had osteomyelitis when he was 13.
Weeks in hospital.
5 operations in 8 days to constantly drain the abscesses in his bone.
Several weeks in a wheelchair and he has never been well since.
It was awful to see a sporty, bright boy turn into what he became overnight.
He had to be homeschooled and apart from a loyal handful he gradually lost his many friends.
My D, now a single parent, is facing the fact that he may never leave home.

Hello everyone. I'm a newbie to this board and so glad to find a CFS thread, as I have it. I live on my own so very glad to say it doesn't affect a partner! And yes, I look healthy so people can't "see" it. I have a lovely GP who understands it an totally accepts it.
Until recently its been at the level of being restrictive and not able to go out on long walks and bikes rides like I used to and very restrictive social contact, but got worse and off to the GP to try and understand why and what the aches and flu and dizziness and fluffy brain can actually happen. No flu or Covid start for me, its always been stress related and family events brought it on this time.

GP knows me well enough to be prescriptive -on a good day one hour gentle yoga at the gym and just 20 mins on the treadmill to keep weight bearing abilities as good as can be and rest rest rest.

I'm glad to be 71 and not have family responsibilities that affect others. It is a lonely road and I just am so thankful for the internet to keep in touch with the world at large.

To those living with someone with CFS/ME, it must be really hard, because it is unpredictable, and arrangements often cannot be made and held to, and if your partner is like me they go and overdo it then you have to pick up the family pieces. and it must be even harder if you rely on your partner's income. I wish you the very best with this - acceptance not fighting it is the only way to go, however. Bests all.

As a CF sufferer of many years ,I will share a small thing that has helped with joint pain. I have read many times of the anti inflammatory effect of green tea but I don't really like it. So I started putting it in the teapot with my regular four times a day roibosh tea. The bursitis on my hip has gone from crippling to stiff but pain free, and the rest of my joints and my neck have also stopped hurting.
Anyone else have one thing that made a difference?

NotSpaghetti

I’ve brought the idea of pacing up to my husband as I see him working hard, knowing we have something coming up, and willing him to slow down so he’ll have enough energy for it. He has always said for him it doesn’t work like that. He never really knows when he’ll be affected by what he does. What he DOES do doesn’t seem to have a direct impact on what he CAN do subsequently. It’s so hard to understand. It seems so obvious to pace yourself, to conserve energy, but he just insists it doesn’t make him more able to do subsequent things.

Choughdancer

What drains and exhausts me most (I can almost feel the life being sucked out of me and a veil of exhaustion descending!) are phone calls, stressful dealings with other people/businesses/organisations and other mental exertion. Physical exertion is never a problem provided I have enough mental energy to actually get out to do it!

I enable my activities with caffeine (not usually recommended, but it makes me feel 'normal' ). I struggle now with going anywhere in the evening, although I can with caffeine; if I do this though, I do have major problems sleeping and then bad effects for days afterwards.

I think many people don't believe I have it as when they see me I seem full of energy (caffeine!) and have no problem walking and dancing!

This is the first time I’ve heard someone say they feel the way my husband feels. Because he can manage physically, probably doing more sport than most men his age, he appears not to have a problem. But mentally he really struggles. Anything requiring concentration makes him feel ill, sometimes for days afterwards. It’s what makes this so hard to understand from an outsiders perspective. Is it still CF when it’s just mental incapacity? I should say he was previously able to cope with concentration. This has only been evident since he developed CF. His symptoms can extend to dizziness when walking down anything that resembles a tunnel, like a path lined with high hedges on both sides. We’ve even thought the fluorescent lights in supermarkets can trigger an ‘episode’, as he can go shopping feeling fit, but come back looking grey and fit for nothing!

nandalot - my husband believes he started with this after being in the garden and getting spray-drift from the field behind. It took years to find this link but he is certain now.

He is a beekeeper so we should have been told about any spraying plans.

My husband has had this for many years and whilst it's now extremely unusual for him to have to spend a whole day in bed, he still suffers.

The thing that made him (and me) most miserable was pacing which we now both loathe.
In terms of me, yes, it was horrible to go to work and never know if when you got home he would be bounding about like tiger full of life and fun or in bed unable to move.
Because he's a super-alive and vibrant person, full of life, novel ideas, laughter, and very active, the pacing was a killer. It stole his very self away. We have muddled along without it and are happier for it! We took a path of acceptance and snatch "normality" whenever we can and pay the price later.
I know this won't suit everyone but the pain and sadness is at least contrasted with periods of great sunshine and joy.

I have had ME/CFS for about 20 years, and at the time there was a very good medical team so I was lucky to get treated. It was after having breast cancer and radiotherapy and they thought that the radiotherapy had stimulated my over active immune system (I have Type 1 diabetes too which is also an auto-immune disease).

I do think that one day they may find that there are several different sub-groups, as my symptoms are not the classic ones. What drains and exhausts me most (I can almost feel the life being sucked out of me and a veil of exhaustion descending!) are phone calls, stressful dealings with other people/businesses/organisations and other mental exertion. Physical exertion is never a problem provided I have enough mental energy to actually get out to do it!

I enable my activities with caffeine (not usually recommended, but it makes me feel 'normal' ). I struggle now with going anywhere in the evening, although I can with caffeine; if I do this though, I do have major problems sleeping and then bad effects for days afterwards.

I think many people don't believe I have it as when they see me I seem full of energy (caffeine!) and have no problem walking and dancing!

Struggling to find words- my reason for short posts on GN.
My OH gives me foot massage almost every evening. I'm sure it helps.

Yes, my husband’s started with a virus. Similar symptoms. Poor memory, very forgetful, headaches, shoulder pain. Only able to concentrate for short periods. Sadly he wouldn’t entertain reflexology.

My husband has had ME for many years. It started after a virus & affects him in many ways- feeling completely wiped out, poor memory, struggling to find the words to say what he wants, headaches, aches & pains. He tried everything & found only two things which helped: reflexology & sunshine.

My husband had to retire early due to the condition too. Unfortunately he’s dismissive of organic food, supplements or ‘alternative’ therapies. Typical man! Only puts faith in provable science!

DH was diagnosed with ME over 30 years ago . He was lucky to have a GP practice who were up on it, For few years it was acute,;he had to retire early but slowly improved. He was able then to work part time for a few years. However, he has never really regained his energy or stamina and has to pace himself. We found that eating organic food helped and taking Selenium. Re the organic, we live near a field and he has to be careful to stay inside or else he has flu like symptoms for a few days.

Nadateturbe, I agree, after the obvious tests turn up nothing, the doctors don’t really know what to do. My husband was offered a course with other sufferers but he didn’t feel he got much from it other than comparing symptoms, which can be a help psychologically, and some yoga relaxation exercises, which he hasn’t kept up. The unpredictability of it is frustrating as it means you can’t definitively plan what you’re going to do with any certainty. I think you’re right about the box ticking exercise.