ME/ CFS ruining my quality of life.

[Workingmum994]

It’s in the title. I am stuck in a rut, I feel I have no quality of life at the moment.

Awaiting a webinar to obtain techniques on how to manage this cruel illness. I’ve looked into nutritionists but they are so expensive. I’ve quit exercise as it wipes me out.

What I can’t stop is work, I work 24 hours over 3 days and then I care for my little girl on the 2 days I’m off. My partner and I care for her together over the weekend.

I have noticed a decline recently. Everything wipes me out.

Please, does it get any better? I genuinely feel that I don’t want to live, but I’m not suicidal. I can’t quite explain it

Not in my experience. If fact I got worse. No exercise, only vvv part time work and the rest of my life is spent horizontal on the sofa or in bed. I’ve missed most of DC’s growing from teens to young adulthood. I can’t even go on holiday because travelling there exhausts me so much I can’t do anything when I’m there so it’s a waste of money!

Have you tried having B12 injections at an aesthetics place? There is seemingly a link to low B12 and ME/CFS and the normal range for b12 is set really low in the U.K. I do feel a lot worse when my next injection is due.

I was chatting to someone who works in a place that does oxygen therapy which has been found to benefit some MS sufferers, she said it could be something that would benefit me. Sadly I can’t stretch to that.

LDN is also improving some ME/CFS sufferers, you can’t get it on the nhs but can have it prescribed privately from a pharmacy in Scotland after a video consultation. I will see if I can find the link. I can’t afford it unfortunately.

I’ve seen a couple of people recommend this place for the LDN
https://ldnresearchtrust.org/dickson-chemist

there are others on this link but I’ve never seen them mentioned.
https://ldnresearchtrust.org/LDN_Prescribers?field_country_target_id=6&field_statetelemed_target_id=All

I was fairly recently diagnosed with CFS/ME. Personally, I feel its a useless diagnosis unless treatment is offered as a result of the diagnosis.

I'm permanently wiped out. I spend most of the weekend asleep, but like you I can't step back from work which to be honest I'm struggling with as we're just so busy. I don't have the mental capacity to think clearly.

I've attended a Zoom call with 15 or so other people - almost all women of a certain age. This comprised some poorly explained science (I think I knew more than the facilitator about some physiology). We had a run through of the different options from which we could choose one but the two I'd be most interested aren't really available as one had such a long waiting list they'd closed it and one had an 11 month waiting list. So I've chosen a 3rd option but had no acknowledgement of that choice.

I appreciate that for some people CFS/ME is a real and serious condition, but having seen the demographic of the attendees of my Zoom call, I couldn't help think that if we got some decent help for the peri-menopause, it's likely that at least half of us would feel much better - and resources could be spent on those who really have CFS/ME.

Have a look at Dan Buglio Pain Free You on YouTube. He's had a lot of success with ME/CFS. It might seem an odd idea at first but his method does seem to work for a large number of people. He talks about chronic pain but his principles apply to any chronic symptom. Maybe have a Google for his success stories with ME/CFS. He posts a free YouTube video every day. He does run small group sessions for something like £80 a month but he doesn't do it for the money and stresses that you don't need the group at all, it's just for people who want extra support.

I was sceptical at first but my DH's chronic back pain has got 90% better so I looked at it for some of my weird dysautonomic symptoms like tacchycardia. It is early days for me but definitely seems to be working as my heart rate has already come down significantly.

Essentially it's about what he calls perceived danger pain/symptoms. Pain and chronic symptoms are caused by the brain thinking that it is in danger eg if you cut your finger the brain creates the pain to warn you. When the finger heals your brains turns off the pain. But in chronic pain your brain keeps sending you danger signals as it wrongly thinks you are in danger and is trying to warn you. His method involves giving your brain messages of safety rather than danger so that your brain learns to turn off the warning signals. It has worked for lots of different symptoms like fatigue, pain, reflux, all sorts of things. Worth a try.

https://m.youtube.com/channel/UC_o_MGVac1_ijjIeig37zVQ

Me, too. I'm getting worse (and accumulating add-on diagnoses) faster with each year. I hasten to add that not everyone does get worse! Some plateau for ages, which gives them a decent chance to figure out a life that works for them, and some lucky sods get long remissions.

Hoping you're in one of the less severely affected categories. Meanwhile, I'm just here for the company

My family member has it, they went from severe to mild.

Pacing is the most tried & tested way to manage it. You need to work out what your energy window is and stay within that.

Do less than you feel capable of, rest more than you think you need to.

Reduce & avoid stress as much as is possible. I know this is easier said than done!

Start a daily relaxation practice - whatever works for you. With ME the body gets stuck in a fight/flight response so the goal is not to just reduce the immediate feelings of stress that you feel, but to help soothe your body's nervous system. Breathwork (like box breathing technique) or meditation are very effective for this. Mindfulness etc.

Try different things, remember it gets easier with practise.

Take regular rest breaks throughout the day. Studies have found just 10 minutes of meditation a day help ME patients manage fatigue and avoid crashing. But 10 minutes of proper rest - not on phone, not reading, not talking, not listening to a podcast...slow your heart rate and breathe deeply.

Try the Visible app - it's designed for ME patients and helps them pace.

My family member manages daily fatigue by taking rest breaks throughout the day 10 -20 minutes each time. Longer on days they need to. Theyve had to learn to accept they can't do everything they would expect to, can't keep the house as tidy as they would like to.

Try & identify triggers for PEM and learn to identify the warning signs that your body is struggling. Visible app helps with this.

Eat nutritiously.
Take shortcuts - use the dishwasher, the slow cooker, park closer to the shops. Buy pre prepared frozen veg.

Happy to talk more over message if you want

"Try & identify triggers for PEM and learn to identify the warning signs that your body is struggling." 😂😂😂

"triggers for PEM" - everything that involves getting off the sofa/bed
"warning signs" - ever present

Sorry for laughing. Advice like this is essential in the early days, and the NHS services are good at providing it. You know what else they tell you? Some parents have to give their children up because they can't cope. It's not about managing a bit of fatigue, it's life-wrecking. Most of us have to live with PEM or we'd starve to death. Many of us (me included) live in squalor because we literally can't keep up with basic tasks.

What I forgot to say is that I also have quite bad ME, and these things help me too but I appreciate you laughing.
And, yes, I know how bad it can be, how hard it is to manage, and the extreme extent it affects our lives, but the op is asking for tips to help manage symptoms and this is it.

If it helps then great. If not then at least someone tried, which as you probably know with ME doesn't happen very often.

It's awful. Life gets smaller each year. Get used to hearing "but you look alright" or "you just need a holiday" or "I don't believe in ME/CFS/Fibromyalgia" and my absolute favourite "you need to pace yourself"! You cannot PACE when there is nothing there, absolutely no energy. That comment is so hard to hear when you live in a tip, you are hungry but can't get out of bed, or you are too tired to use the laptop to put in a food order, let alone put it away when it arrives. People don't understand fatigue. It's not like being tired. It's being too exhausted to finish your meal as you can't sit up anymore or having to crawl to the toilet.

I spoke to my GP last week as I am in bits. He said "you have CFS, this is your life, there is no treatment, I can't help you".

It's so insulting when people think you are a fraud and making it up. Like anyone would chose to live like this.
So, yeah OP I know why you feel hopeless but there is nothing you can do. It gets worse and you get more illnesses. It's grim.

I can't say it will get better, but things happen in phases for me, with exhaustion levels varing over time. Pacing has helped me so much. Its a way of life, constantly managing activity aiming to get a reasonable balance in life. With chronic fatigue you can't just get tired and keep pushing yourself to keep going without consequences. Your normal week sounds exhausting and too much to sustain. You need to figure out what wipes you out most and try to figure out how to change it. I started with a diary of activity + tiredness from occupational health. This started me on the journey of realising what impact my activities were having. You also have to learn to stop when you sense you are tired, not when you have already got to exhaustion. Kids are very draining mentally and physically. My motivation to stop myself was the realisation the energy I saved could be used with my kids. Hack your own life and make choices that feed your soul. Clean the house or go to the park? Drop your standards for cleaning and tidying, who is actually noticing! Can you work from home to save the effort of travel? What about half days, split between work and your kid? Encourage your partner and kid to have a special weekend activity that gives you a break; swimming, bike ride. Sleep can have a huge impact, think what could make it better? Reduce the effort of cooking; buy frozen veg, use the slow cooker to batch cook. Don't cook a meal for family, meet at a pub or have a takeaway so you have more energy.
For instance, at xmas, we have split the workload; my parents come to my house bringing a freshly cooked turkey while my husband cooks the veg. We get to relax and spend hours watching our kids with their presents before thinking about starting lunch.

Get b12 blood tests and if not entitled to nhs b12 injections book some privately if your results are below 400. Also ensure iron is above 50

Also, the way you are feeling may be part of the adjustment to your new "normal". I felt like I went through a grief type process as I began to accept and adjust my life to my new level of energy. Other people have said they went through the same. Thats not to say I have given up, but rather than fight it, I have accepted its not going away and this is my life now, so I manage it and make the most of what I can do.

My daughter (24) has had CFS since her early teens , at one point she was literally bed bound so from that point she has improved but she’s still incapable of holding down any type of regular employment as she can basically manage one burst of activity a day with the odd better day thrown in . She had loads of therapies as she was under the CFS unit at Kings but we parted company with them when they wanted to do graded exercise , which she tried but it made her much worse . Our focus now is to give her a decent quality of life .

You can give yourself the best chance of getting better if you rest more. You cannot ‘push through’ ME, and if you are constantly exhausted from your present activities, you are doing too much for your body as it is at the moment. And of course, constantly feeling wiped out would get anyone down.

Your schedule sounds like a busy one even for someone in full health. Try and get rests when you can - even a 10 minute micro rest is helpful. But, rest isn’t texting, browsing the web, or tidying up. It’s lying down with maybe gentle tv or music depending on your brain fog; maybe nothing at all. I get a lot of benefit from doing yoga nidra every day, and listening to audiobooks lying down with my eyes shut.

Try and build your time around your rests. Think of resting not as wasting time or being self indulgent, but as giving your body the best chance to improve.

Could you try having one day off every weekend when your husband has sole care of your daughter- or 2 afternoons? And go to/stay in bed. Staying in bed is a signal that you’re not well and you need to recuperate.

Also, save physical effort wherever you can. So sit rather than stand, shorter showers and lie down afterwards, online supermarket shop rather than doing a big shop etc. You might find it interesting to have a look at the Physios for ME website.

Read up about pacing, but don’t beat yourself up for not doing it perfectly- it’s impossible! Just do your best.

All the very best to you x

For those referencing LDN my husband has been taking it daily for the last 2 years and it has drastically improved his quality of life. DM if anyone would like more details

Studies have shown that ME has the worst quality of life of pretty much any illness. But kicking against it just won't work. First step to stabilisation and hopefully improvement is realistic acceptance. "Fighting Fatigue" by Sue Pemberton and Catherine Berry is an excellent book. It'll tell you how to pace effectively. No woo or false promises.

There is a good CFS/ME group on Reddit. It has some very good resources. It is the most depressing illness ever. To spend every waking hour feeling permanently exhausted and then go to sleep and never wake up feeling refreshed is like a permanent state of torture.

100% agree with the Reddit CFS/ME group. Lots of practical advice on there. My husband has tried all sorts of things inspired by that group, plus reams and reams of his own research (when well enough) for the last decade. It's gradually improved (although life with never be the same and he still cannot work) but quality of life is much better than before, but if course still with lots of ups and downs. Some of that I think has also come from a little bit of acceptance.

He has tried all sorts - literally 100s of different supplements, prolonged fasting, injecting human growth hormone, LDN (low dose naltraxone), different types of experimental/off lable drugs, different fermentations & probiotics and his most successful treatment now is red light therapy which has been a complete game changer for his brain fog and overall fatigue.

He's currently researching FMT - fecial matter transfer which some research shows a significant improvement for CFS/ME suffers, depending on what may have triggered it.

There is hope! Although I know some days are very dark. Sending support to all of those suffering & your partners/families too.

Are you able to wfh?

It is very hard to truly practise it well but pacing does work. I don't know how you are managing that schedule to be honest. It doesn't seem sustainable. LDN is also an incredible help for me (from Dickson's pharmacy in Glasgow) although apparently it doesn't work for everyone. I also made a lot of changes to my diet and take a lot of supplements amongst other things. I stopped LDN for a month and noticed that things started to go downhill so am back on it again and doing well.

Make of this what you will - an anecdote from my friend of 30 years - a medical professional (trained in another European country) who grew frustrated and mistrustful of the GP's she saw who seemed to have level little depth of understanding about ME/CFS - she complained of many physical symptoms and had to reduce her hours, stop all locum work and was unable to function at home - she's was very active and sociable person with many friends - she has a unique and magnetic personality and attracts friends like no one I've ever known. She refused to accept the point put to her by various GP's and specialist consultants that part of her illness was psychological. She had the financial wherewithal to have her gut biome analysed by private laboratories, to consult independent specialists - sometimes over the internet - in pursuit of answers about her illness - she explored so many different avenues re:diet, supplements, etc - she was ill for 5-7 years - hard to pinpoint the exact start and end - it seemed to me to be a very slow and gradual recovery. She was, even as one of the friends I love most, almost unbearable at times - she would talk frantically frenetically and obsessively about every aspect of her illness, the impact it was having on her, her marriage and her children, her work, her frustrations with the NHS - fortunately we have this relationships where you could jump in and interrupt her and tell her to stop and change the subject - it was like she was constantly reliving a trauma. When she was well, before her illness, when she doing locum work near us, she used to pop in and stay the night - that's how close we were. If you talk to her now - she will admit that she refused for a very long time to admit that the psychological part of the problem was a significant part of her illness - we've talked about this since. She was very much of the mindset that the cause or causes lay just beyond the reach of current medicine - it was to do with her mitochondria, her gut biome, etc but she also conceded that many other people she had met with ME/CFS, while sharing many similarities, seemed quite different - so it seemed the illness covered a broad range of symptoms... and possible causes/triggers. Part of her problem was that she over extended herself with people - she has always been clear that learning to say "No" to other people and to put herself first - almost every minute of the day to begin with, was a part of her way back to her previous good healthy state - she was able to be far less "selfish" as she recovered - it put a real strain on her marriage and tested a few family relationships and some friendships. She was that friend who would talk too much and too loudly in a restaurant, laugh too unselfconsciously, be the first to dance wildly, to volunteer to take part in local initiates and events, to be on group committees, to take meals round to ill relatives, to answer calls from friends wanting advice... she's always been a very generous, good hearted and thoughtful person - but yep - she had a very hard time for 5-7 years.

Wow, I didn’t expect such replies and such helpful advice and sharing of experiences. Thank you. I’m sorry for my delay in replying.

I have today off, to chill out whilst my little one is at the child minder. I’m working this weekend, which I am dreading, then into Monday, Tuesday and Wednesday.

I have looked into LDN and I’m getting the documents together to arrange a web chat to get the medicine. As I’m willing to try anything that’s legal at this point!

I am going to call the ME association at 10am too.

My work is going to do an occupational health referral for me too.

I also have an appointment with a person that specialises in Systematic Kinesiology which has been recommended to me.

xx

How did you get on?

I am feeling very miserable with this horrible illness and a complete lack of energy at the moment especially when there's so much to do at Xmas time :(

@Workingmum994 did you start the LDN? If so, is it doing any good?

That sounds really tough. No experience at all of this but a friend of a friend had ME and breathwork really helped her - so much so that she retrained in it. I don’t usually go in for alternative/holistic therapies but if conventional medicine hasn’t helped then maybe it’s worth a try? Sure there’d be free resources online/on YouTube etc. good luck and hope you find a way to feel better x