Struggling with chronic fatigue syndrome

[problemsinthemind]

I feel so isolated and so frustrated. There seems to be nothing that can help and I’m really struggling.

it’s been 2.5 years now and it’s getting worse not better. Has anyone recovered ? How long did it take? Is there anything you can recommend? The gp is no help at all , I’m fed up of feeling like this.

Yet you have a chronic fatigue diagnosis? That doesn’t make sense.

Hi,
Have you heard of intermittent fasting, listen to Dr. Mindi Peltz- Fast Like A Girl.
Also look at improving your gut health, a product such as symprove may help x

OP, there are always posters on ME/CFS threads who have miraculous recoveries from psychiatric approaches or positive thinking. I’d be wary of getting caught up in this. ME is a neurological disease and is classified as such by the WHO.

If someone recovers by simply changing their mindset, it’s highly likely they have/had some sort of mental fatigue, not ME. It fuels the stigma.

Obviously someone who wallows and allows ME to define them is going to have less hope of a positive outcome than someone who actively tries to get better; this can be said of any illness.

Listen to your body, if it needs to rest, it’s not you failing. If you rest, you will come out of the dips more quickly. Stay as active as possible but within what you can manage without pushing yourself in to a crash. Mindset is important, but it’s not the cause or a factor in whether you will recover or not.

Pacing is vital but frustrating, but Post Exertional Malaise is your body telling you that it’s beyond your capabilities with the energy you have. Look up spoon theory, cheesy but useful in understanding how your energy works. Prioritise what you need to, let go the things you don’t.

Find easy, small activities you can enjoy on the bad days. If you listen to your body, things can improve and fluctuate over time.

I have had moderate-severe ME for over a decade; I lost everything to this disease but I manage it well and I still look forward to things in life. I spend time with my family with adjustments in place. I’m a positive person but I know my limits and whilst I do push the limits, it is only when I know I have the chance to recover. It’s not always like this, when I have weeks on end of dips, it does get me down (and it’s fairly regular this happens) but I know that if I listen and rest, I will feel more able soon .

Life with ME is hard. It’s a spectrum and not everyone will be affected in the same way, don’t compare. If your neighbour’s friend’s auntie has been diagnosed with ME but is working full time, paragliding at weekends and going to the gym 8 days per week, I can guarantee you they do not have ME.

Mine is radiotherapy induced (cancer treatment), I assumed it would be short term side effects, but 7 years later I'm still here. Some days are better, some are worse but overall I have less than 20-30% of my previous energy levels. I was an OT, which has helped me with (very reluctant) acceptance and with coping strategies. I gave up work 5 years ago because even after reducing to part time work and only working, sleeping and doing my very basic personal care felt too unsafe and exhausting. I was so tired that I was often shaking and sometimes dizzy. Driving in particular (to and from work) felt particularly foolhardy. It took about a year to 'recover' from pushing myself too hard at work.

I still have CFS and working is a pipe dream, but I'm gradually improving. It's frustrating and tedious, but I'm so much better than I was a few years ago. I can now shower, cook, go for walks, drive and do other 'normal' practical tasks, without needing several hours to recover from 10 minutes of 'doing'.

First and foremost, pacing is vital. Always try to do less than you can, then take a decent break. Rinse and repeat when you feel able to. Think of your energy as blocks/spoonfuls/whatever term works for you.

Don't push yourself--it's really counterproductive. Your body needs rest, kindness and patience. Audiobooks are good when you have energy to listen (online local libraries usually offer free downloadable loans). I found puzzle games good once I was over the very worst of it/on better days, to keep my brain active. Otherwise, try to become the expert on your body and listen to it. Acceptance is helpful, but not always easy. Getting outside is good, if you can.

Eat well, try to stay well hydrated. Dehydration makes us more tired. I found a soupmaker, bags of chopped frozen veg and cooked chicken useful in the beginning, though I don't really like soup, lol. Protein is also important for your muscles and energy levels.

Good luck, I hope things start to improve soon.

ME is a neurological disease; it is not psychosomatic as your post suggests. Whilst mindset is important, it is not a factor in whether someone recovers or not.

If you’re feeling better after a week of psychological input, I’d be questioning if you really have ME?

My last episode of this was about 10 years ago, I got CFS after having flu and I was up and down with it for about 5 years. There wasn't any thing I did that made it go away for good (although pregnancy really helped) and I still worry it will come back if I he a cold or overdo it.

Thing that helped me were:
Eating for fuel - I really looked into what foods gave me energy, I would jave around 6 small meals a day and snack on nuts, peanut butter crackers etc.

Pacing - I would force myself to do something (walking, cleaning etc) but then balance that with twice the amount of rest.

Unusual sleep - if I woke up at 4am I would just get up and then to back to sleep when it got too much. I had to forget about the idea that 8 hours of sleep a night was good for me and just listen to my body.

Vitamins - lots of extra vitamins and highly nutritional smoothies, soups etc

Manuka Honey - did wonders for my overall immune system.

I was lucky in that I only ever had mild - medium episodes that would last 2-4 weeks and I knew what would trigger them. It was at it worse when my dad passed away and I'm sure getting pregnant was what helped pause all the episodes. I wasn't as depressed anymore as was over moon and the extra homornes must have been food for me. As soon as I found out I was taken off the citralapram I was taking too.

I'm still careful not to overdo it and if I so much as have a sniffle I will make sure I rest as not trigger again.

I hope you find something that works for you

Hello! Even if your thyroid is well controlled you can still get the fatigue. The thyroid can also cause the emotional issues. It’s sucks. I have enough energy to hold down a full time job but not much else! (I know many can’t so I’m probably more fortunate that some)

No, it’s not psychosomatic. I agree. I know it’s neurological. It’s not a ‘psychological approach’. It’s about calming the nervous system. It’s neuroscience.

I’m under the ME clinic with very severe ME. So l do have ME.

Mine came from long Covid. CFS is one of the many things that long Covid has triggered and 4 years on, my life has changed beyond recognition. I used to be very fit, very active, work in a stressful high profile job and exist on very little sleep with a very full life.

Now I spend most of my life ‘resting’ and trying not to compare my present to my past. I’ve had extensive sick leave from my job (including 3 phased returns as part of the classic ‘boom and bust’ cycle) and am still struggling to get through a work day / week. Much of my work time is spent faking that I’m ok (which uses up precious energy) but I need to work as I’m my only source of income so somehow I have to manage.

This is made more complicated by me having ADHD as the strengths of my ADHD (fast paced, thrives under pressure, loves constant change, very active) directly conflicts with managing my long Covid / CFS so pacing is a constant challenge. I have nowhere near mastered it, not sure I ever will, and it’s a fundamental shift in mindset for me as my whole life (until now!) has been about pushing past limits. I try hard to ‘“be kind to myself” but I don’t actually like this version of me. At all. I have become everything I dislike / don’t value. I’m having therapy, I’ve seen a lot of doctors (at huge expense), I can say all the right things as required BUT….I hate my life. I try hard not to hope things get better as it will be too devastating if they never do. So instead I am working to accept who I am now. But it’s a huge battle and I’m not sure it’s one I’ll ever win.

I wish I could sound more positive. Just typing this makes me cry. I feel for you OP. I feel for everyone on this thread.

@HundredMilesAnHour I’m sorry you are suffering too. It must be quite an adjustment for you.

This is not personal to you, but it might be helpful to distinguish that neuroscience/neurocoaching is helping you with your mindset whilst suffering from a physical disease; your post made it sound like you felt better physically after a week of this, which is highly unlikely if you have severe ME (it may have helped you mentally get to a place of acceptance, but if you have true ME, it won’t have helped recovery, especially in a week).

You mentioned that it (ME?) is your brain trying to protect you; this is not the case for a neurological disease, so it’s important not to mix the two as it really feeds the stigma that ME is all in the mind. A stigma which people have fought years to overcome.

I was unable to read for 2 years. This week l read a book. Very slowly but l did it.

3 weeks ago l was crashing constantly and needed a commode. Now l don’t.

l had very little cognition. Now l can post on here.

The ME clinic classed me as very severe. I haven’t left the house for 9 months. I managed a very small drive in a car this week

Is that private or NHS? I've had ME/CFS for 10 years, it's difficult because I think there are lots of different subtypes with different causes and what works for one person can make someone else worse

My husband has had ME for about 9 years. It's awful, it's robbed him of time with his son and now it's also robbing him of time with our daughter. His condition is normally moderate-severe but he's been developing other potentially serious symptoms that aren't explained by ME, and he's struggling. He normally works full time from home but he's been off sick for more than half the past year, having been doing very (relatively) well beforehand. His normal pacing isn't working and he finds it very difficult to watch family life from the sidelines. I worry he's spending too much time in the red and he'll never get back out of it.

He has a very supportive GP but there's absolutely nowhere he can be referred to - unless anyone living in Scotland can tell us otherwise?

My heart goes out to everyone on this thread, especially when children are diagnosed with it. It's so cruel. I don't have advice to give but I hope you have people in your corner.

@HundredMilesAnHour I have been where you are; I lost my job in the end as I was about to be fired for repeated sickness. I felt that if I resigned, my record would be clean for a new job in six months when I recovered (oh the naivety!). It’s ok to say everything is awful, because living with this disease is awful. It robs you of everything and makes you feel incompetent. It’s ok to grieve your old life.

I’m over a decade in and burst in to tears just yesterday when my physio asked how active I was; I jokingly asked if getting dressed counted and then the floodgates opened because I used to love the gym and my old life. Now I spend my time thinking about whether I should use my energy to have a shower or get dressed. I also have to use a wheelchair. The poor physio didn’t know what to do with himself.

It’s ok to not be ok; it doesn’t mean you’re not trying hard enough.

I'm so sorry 😢 it's incredibly hard isn't it 💐 I find it difficult that my dad and aunts and uncles are in their late 70s and are going running and travelling and living incredibly active lives where as i am in my 30s and feel about 100

That’s excellent and you should celebrate these things; I’m not doubting your experience of ME. I’m explaining why it’s important to not get caught up in the idea that a change in mindset can make miracles.

I too was classified as severe; over time, I can now manage small activities with lots of recovering and rest periods. I have never had Neuroscience coaching. ME fluctuates for a lot of people; some do recover and some get worse and some get better. With or without Neuroscience coaching, you may have gotten to this point anyway.

If you find it beneficial, that’s great and it helps you; but it is very important to distinguish that ME can not be resolved by simply calming the nervous system or adapting a different mindset, otherwise why would anyone have ME?

Oh bless you @MESecond and thank you! I’m so sorry to hear your story. It really bloody sucks doesn’t it? Sending you the biggest hugs.

I feel like I’m hanging on to my job by a thread. I’ve been muttering about disability discrimination and tribunals to HR and they’ve recently agreed to ‘reasonable adjustments’ but I’m under pressure to do some amazing work to get off everyone’s radar. I actually managed to get promoted last year (despite the long Covid/CFS) but since then I’ve had 2 relapses, both triggered by being given completely unsuitable client work (and it not being discussed with me beforehand so I couldn’t say no as it was too late). So now I’m back on the “can she handle her job or not” radar. And quite frankly, I don’t know the answer myself. My confidence is shot to pieces. My bloody ADHD is getting worse because of the hormonal changes triggered by menopause (and let’s not even get into menopause symptoms) and I’m struggling with worsening depression. Of course previously I managed all of this by killing myself in the gym (and loving it) but that’s no longer an option. 😡I turned to comfort eating instead and put nearly 6 stone on (that’s a lot of misery). I’ve managed to get it off again but now I’m spending money on clothes I don’t need. ADHD and being confined to the sofa is a very bad combination. I’m out of sick leave so if I don’t work, I don’t get paid. I wfh 3 days a week so can hide how much I’m struggling at present but at some point, either things have to improve or my number will be up.

My brother had ME for 5 years in an era of huge stigma (‘yuppie flu’). He was bed bound for 2 years, feeling as though he had flu + lots of other symptoms. Doctors were totally dismissive so he gave up trying to get help & just lay in bed feeling horrendous. (He was lucky that he had someone to look after him.) After a couple of years, he managed to get on a plane & went to a hot country for 6 months where he completely rested (lay on a lounger) & listened to classical music. Again he was looked after by other people. He was very lucky to have the opportunity/resources to do this because it helped immensely & he improved considerably. After his return home, he carried on improving but extremely gradually. He had to pace because he still had PEM but he did very carefully & incrementally increase his daily walks (this was NOT graded exercise). It took another 3 years before he was ‘well’ again. I don’t think he has ever fully recovered (maybe 90% better?) & still has some immune dysfunction but he got his life back.

This gives me hope that my teenage dd will get better too. She has had Long Covid for 4 years (bed bound initially, then housebound & now just very limited energy). Again, doctors have been unable to help so we don’t bother them.

My impression is that people are trying many different expensive treatments (hyperbaric oxygen, plasma apharesis, immunoglobulins etc.) & for each of these treatments, a percentage of patients are helped but not all patients. So you can use up a lot of energy, time & money searching for the thing that will help you.

Although it isn’t a psychological illness, I do think that low stress, lack of pressure & complete rest could be important healing factors - easier said than done, I know!

I'm so sorry your dd is so ill, I was in my 20s when I got ME and that was hard enough, I can't imagine going through it as a teenager. I know children/teenagers have a much higher recovery rate than adults with ME, I think it's likely the same with long covid as it's so similar, I really hope things get better for her 💐I have a friend who had ME badly as a child, she's now in her late 20s and fully recovered, she started to get better in her late teens. she is married with children and a full time job ❤

It's a truly horrible condition and made worse by being an invisible one. I'm moderate/severe, likely caused by trauma but followed on from a COVID infection.
I wear a visable device to help with pacing.
I've had tests done and follow a candida diet, as well as taking lots of prescribed supplements .
Exploring complimentary therapies - Vegas nerve practitioner, homeopathy and oesopathy.
Have joined a local FB support group.
Know I have to recover, even if not back to original levels, as I cannot continue this limited life...... it's hell for me and my children. Complicated relationship with DH.

It’s about the plasticity of the brain. The symptoms become hardwired in. But because it’s plastic they can be hard wired out.

l had to do something. I’ve spent most of the last 8 months in bed unable to do anything, even talk,

l was suicidal every day.

Have you found the Health Rising blog? It’s great, the author summarises recent CFS and Fibro scientific studies and sets out the different theories that researchers have about how CFS might be happening. Since it’s a syndrome there are likely to be subgroups of people with different issues under the same umbrella. He also interviews people about recovery and takes a look at common supplements and medications.

To start with, my greatest sympathies, also suffer with Chronic fatigue, and have been on a bit of a journey the last couple of years to understand and work to heal myself.

second, you really need to get to the bottom of what has caused it, you would be surprised at what you might come to understand about yourself.

unfortunately a doctor won’t really be much help as there are so many many reasons behind it,

what were the years leading up to it like? Abusive/traumatic relationship?
depression?
autistic burnout, (are you an undiagnosed adult)?
consistently high cortisol levels
post viral fatigue
hormone imbalances
thyroid issues

start with a full bloodwork panel, if possible consider a ‘functional bloodwork panel’ which goes a bit deeper.

what’s your diet like? Food intolerance can cause fatigue, which in turn can mean we eat poorly as too exhausted to cook or just need something as a pick me up

I have Chronic fatigue, it’s horrendous, there are things you can do, but it is unfortunately a lot of trial and error as what works for me may not work for you. I’m happy for you to DM me if you like,

My CF is getting worse now that I am older but I have struggled with it since my teens.

It is difficult to keep a job as can't commute anymore and I now only 'function' properly for a few hours in the morning.

I have a healthy diet, sleep enough hours but I am always exhausted. Having a social life is so difficult because chatting to people for an hour will take me a day to recover from.

So no real advice, other than saying I pace myself as much as I can and planning to switch to home working only but that means accepting I cannot do my current job anymore. I also moved to a small seaside town 3 years ago as I could no longer cope with living in London and that has helped lower stress and made it easier for me to go around.