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.

Not sure if this has been mentioned but a family member has ME and now takes low dose naltrexone. She feels that although the ME is still there the naltrexone has helped immensely.

I was one of the lucky ones who has moreorless recovered. I was lucky too, because I had an on the ball and very sympathetic GP who referred me to the long gone (I think) NHS chronic fatigue unit in Liverpool where I was formally diagnosed.
Its 8 week treatment programme involved graded exercise and talking therapies, but in essence the advice given was to break the day up into small periods of activity followed by longer periods rest and build up levels of activity very slowly. In theory this seems an easy thing to do, but in practice when there is a home to run and a family to look after it’s not so easy. There were some days that were better than others but the mistake I made was that when I felt I could do more, I did which meant I paid the price in the following days and overall recovery was slow.
A nasty viral infection set my recovery right back and I was eventually referred to the CFS centre for a second time. Getting there was an effort in itself but this time I followed all the advice completely and decided to stop participating in an on line forum for chronic fatigue sufferers where no one had anything positive at all to say and there was a lot of talk about what seemed to me to be very obscure and expensive alternative therapies
Chronic fatigue sufferers have every sympathy from me - I was so poorly and so debilitated by it that I had to give up a job I loved and was unable work for several years. It’s an awful thing, and all the more so as there are plenty of people who seem to think that those who say they have it are in some way trying to pull a fast one. Absolutely not, the exhaustion and brain fog is real.
As I said above, I consider myself recovered now but nowadays when I feel tired I don’t push myself to carry on. I never want to go back to the days when I had so little energy that I couldn’t even hold the hairdryer long enough to dry my hair.
I have no idea what the recommended treatment for CFS is nowadays but for me a programme of graded daily exercise built up slowly over a period of months seemed to do the trick.
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I think we can all agree that me/cfs is an utter nightmare, made worse by the lack of understanding/ sympathy/ support from friends/ family. It's torture losing everything in your life to it.

I've done a huge amount of research on behalf of my daughter, as this could not be her life.

In my experience, brain retraining programmes/ nervous system work/ poly vagal theory etc helps many people. For many others, sadly, it does not.

There is no right or wrong, & the difficult thing about this illness is what works for one person may not work for another.

For us, my daughter was so ill, & conventional medicine offered nothing, so the neuroplasticity programmes were worth a go, as by this stage we had nothing left to lose.

As I said upthread, she is not fully recovered, but we are in a different universe to where we were when she was bed bound & barely able to speak.

Good luck everyone. You have my sympathy...x

I think the reason why some things work for some people and not for others is that there a variety of conditions lumped under the ME/CFS label. There are a lot of different things that can cause chronic fatigue, but in order to have ME proper you have to have post exertional malaise, which is sometimes called systemic exercise intolerance. If you have that then you get a severe and delayed response to exertion or exercise (the amount of exertion it takes to trigger it depends on how severely affected you are) it usually starts 24-72 hours after exertion and makes you feel really ill, flu like symptoms, neurological symptoms etc. If you have that then graded exercise programs etc are unhelpful and potentially dangerous as the body can't cope with exercise and you can end up making yourself permanently worse. But If you have other types of fatigue/chronic fatigue then those things may be helpful. Is important to find out for yourself as doctors don't bother to distinguish and will diagnose everyone under the same label which is unhelpful as some advice can be helpful for one person but a disaster for someone else.

This is a thread about chronic fatigue.
If you want to talk about how physical exercise has helped you in your life , start your own thread.

Has anyone got any experience with the Visible armband and App? It’s like a Fitbit but specifically monitors fatigue and energy so you get a warning when overdoing it.

I've heard good things but not tried it myself, how does it work does it go by heartrate?

From what I understand it is mostly heart rate that feeds into the app. I’m not sure about always having my phone on me as I’m short on pockets!
It’s £70 for the band and then £20 a month subscription for the app. All the reviews on TRUSTPILOT ARE 4 or 5 stars with people saying that it helps them manage their energy and avoid crashes. I would find that so helpful.
im at the stage of having learned over decades what helps and what doesn’t. I’ve done the autoimmune protocol and eliminated the foods that negatively affect me (goodbye eggs and nightshades 😩) . I’ve done a fair amount of therapy including The Hoffman Process and the Lightning one, but my energy levels continue to baffle me.
Am I tired or depressed, tired or sad, tired or sleep deprived, tired or lonely, tired or sick, tired or a bit bored? Drives me nuts.

Sounds interesting! I'll have to look more into it. It's so hard to know with energy isn't as so many things can affect it. I find I get lots worse in the heat as well so not been enjoying summer! I've been looking into supplements to see if any are worth a try but it's so hard to tell if any are any good or if if theyre just a scam. Not looking for a magic bullet but just anything that could help reduce symptoms.

Visible is great and very useful but only if the majority of your symptoms and pem are caused or triggered by activity that causes your heart rate to rise.

So it doesn’t take account of other factors eg cognitive pressure eg office work, computer work, planning, travelling as well as emotional stress, mental pressure etc

I has the visible armband. I didn’t find it helpful. Most of my crashes are cognitive.

Ah that makes sense. Lots of my PEM is caused by cognitive exertion too so may not be much use for me either, that's a shame

I'm glad you're able to work and are thriving however my dd spends 20 hours a day sleeping and when she wakes up she's in pain, some days I don't see her at all she can't get out of bed she'd love to work but a lot of people with cfs just can't.

Yes shame but I guess good for those whose main factor is physical overexertion

I’m trailing an app called Welltory, free version at present. As well as the usual stuff it has a setting called stress and another called pressure.
Im waiting to see if either of those can help me judge when rest is needed to avoid a crash/pem.

I was diagnosed with ME 3 years ago. Within weeks of that, I was also diagnosed with autism. A couple of months ago, I was diagnosed with ADHD as well.

To be honest, OP, my ME has got worse rather than better. In have had long relapses of many months. My ADHD psychiatrist reckons that the stress of all the years (I'm late 50s) of hiding my autism and ADHD has caught up with me and hence I've ended up witb ME and it's getting worse.

I had to give up my sport before I had the diagnosis. I now can't work either, not even part time. I like to go out for coffee, but have to limit how often I do that, because I find doing that exhausting.

Sorry not to be more positive.

I note at least one PP has mentioned the Lightning Process helped. I'd be wary of that. A lot of people have said it did absolutely nothing for them. I have heard some interviews on the radio about it. I think the ME Association may have a statement on it too.

It's worth having a look at the leaflets on the ME Association website. They are very helpful.

Anyway, I am trying to make the best of things. I have improved my diet for example, not because I thought it would help me ME but because I thought it would help improve my general health. Like the PP with ADHD I also did a lot of stress eating and put on loads of weight and have now lost a large chunk of it.

I also signed up for some sleep coaching. My sleep is still bad but it is less bad than it was. That was on a website called Sleep Station.

I figured that I need to focus on what I can be successful with, and improving my sleep and my diet seemed achievable.

Some interesting theories and debate here. For me I’m convinced (and some may think me deluded about this) that my Chronic Fatigue was caused as a result of a badly infected in growing toe nail and the many courses of antibiotics I was prescribed both before and after it was dealt with.
I’m not entirely sure what is meant by graded exercise - now seemingly discredited by some, but it could well be that this is what eventually worked for me. I had my doubts about it the first time I went through the NHS programme, thought I knew better, and ignored a lot of what was advised but when I was referred the second time I was so desperate to get better that I was willing to do exactly as advised which was more to do with building up the daily activities of living such as getting out of bed, going to the toilet, having a shower etc etc.and knowing when to rest. It had absolutely nothing to do with running, swimming etc and it certainly wasn’t a quick fix but something must have triggered my recovery because I’m here now and managing OK.
I hope that all of you suffering at the moment eventually find something that helps

Hello all, unlurking to join this discussion as I have struggled with CFS for almost 5 years. Sparked by a traumatic stressful event plus longstanding trouble with viruses especially Epstein barr and covid.

In January this year I first heard of the Perrin Technique, via Raelen Agle's YouTube channel:

I ordered Ray Perrin's book, and immediately decided to try it. I found a practitioner near me and started treatment within the week.

It's a manual therapy developed by Dr. Raymond Perrin to help manage ME/CFS, fibromyalgia and potentially Long COVID. It involves osteopathic and lymphatic drainage techniques to stimulate the movement of fluid around the brain and spine, aiming to remove toxins and restore healthy nervous system function. more info here: https://theperrintechnique.com/

I had weekly treatments until June, then fortnightly, now 6 weekly. It has worked for me and I am absolutely amazed and delighted! I feel my normal self again. In January I was facing leaving a job I love because of so many boom-bust crashes and time off sick, hardly able to care for my kids and was just dragging myself through each day. This treatment has given me my life back, although I will always have to be careful with my energy. I have spent so much time trailing back and forward to rhe GP but after extensive testing, the conclusion is CFS and there's nothing they could do for me.

I have found that many people have not heard of this treatment and the ME foundation and NICE have been quick to decry it, but it's rooted in solid peer-reviewed science and most importantly, it actually works!

CFS/ME is complex as we all have so many variables in our health, but it's worth considering. The basic premise is that the brain has its own lymphatics, the glymphatic system, and when it's clogged with toxins and viruses its function breaks down and leads to a poisoned central nervous system, which causes havoc in our bodies.

It is not a short-term treatment, and I have to say it has been really expensive, especially when I was having it weekly. It is also pretty invasive as you have lymphatic effleurage over the breasts so you have to be topless for part of the treatment, although the osteopath I see is careful to help me keep covered as much as possible and that part doesn’t take long.

Ray's book also has home exercises you do 3 times a day. These on their own are helpful too. They are on YouTube:

I'm not a salesperson or affiliated with it, I just feel like I have got my life back! And not enough people know about it.

Oops not sure why the link didnt work, this is the interview I watched on

Did you take antibiotics during the illness? Or was it perhaps long covid? I was nearly finished off by chronic fatigue following illness. It went on for months & reached the point where I didn't even have the energy to fix food & drinks most days. I was about to give up at that point but took a punt & bought some cistus incanus tea & a teaball, then took the tea along with swallowing a couple of cloves of diced raw garlic three times a day. I was amazed how rapidly this resolved the chronic fatigue issue.

After illness, there can be dysbiosis (gut microbiome imbalance) which causes these problems. Antibiotics are often the cause but a bacterial infection can also cause it in & of itself. Taking PPI (proton pump inhibitor) medication is another thing that absolutely decimates friendly bacteria. CI tea & garlic kill off the proliferation of bad bacteria. There are many other herbs that do this too.

Restoring high levels of friendly bacteria is step 2, done by consuming lots of pre & probiotics. A broad spectrum probiotic supplement; fermented foods such as kimchi & live (from the health food store fridge, not the supermarket shelf) sauerkraut, live apple cider vinegar, eating a broad variety of fresh veg & to a lesser degree fruit but better to avoid sweet stuff as bad bacteria feeds on most sugars. If you use sugar, swap it out for Xylitol as this is deliciously sweet but it actually kills bad bacteria.

This is a long term protocol. Results begin immediately but full recovery is a longer haul. Its been months for me & i'm still not fully back to my full old level of energy but most days I'm about 90% there & am up & out & about & doing my chores. Long mountain hikes aren't yet possible & I do get very tired by the evening most days.

The role of dysbiosis in ME/Chronic Fatigue is established. Here's one paper on it & you can find many more.

www.sciencedirect.com/science/article/pii/S193131282300029X

Thank you for your kind words and I’m so sorry that you are dealing with this horrible illness now. It is wonderful to hear about your friend’s recovery & stories of recovery, including my brother’s case give hope that it is possible, given the right circumstances and despite any meaningful medical help.

Actually, we are seeing quite an improvement in my dd since the summer holidays started & she is not having to struggle with the cognitive demands of education. The unrealistic expectation that children will continue their education makes it all so much harder & I suspect delays/prevents recovery.

Thinking of all of you who are still living with ME & wishing you all the best of luck.

That's wonderful that your dd is doing better, I really hope things continue to improve for her! ❤ Yes schools often don't seem to understand or support children with long term illnesses very well at all. 😢 Some areas do have medical education services that have small units or home tutors for chronically ill children but I think it's probably a bit of a postcode lottery.

What are your numbers for b12 and iron. The nhs will tell you it’s fine when it’s not

Thank you. Yes, total postcode lottery. At least we have found the local Education ‘Inclusion’ Service supportive as there are other parents facing prosecution for fictitious illness or neglect because their children are too unwell to go to school.

Can I jump in and ask you what fine and low look like in your experience? Mine were 230 B12, 7.82 folate last time. I was told iron was a bit low and if I can't tolerate NHS tablets I should eat more leafy veg.

This stuff puts you in such a weird place, feeling like a hypochondriac but also struggling to function. I keep thinking if I could lose weight maybe they might listen. But that is hard to do when you can't go out much, work or sleep.