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.

It’s NHS. I agree, and I think there a million and one tips/strategies/snake oil treatments that we’ve all tried. Some are good, others are expensive rubbish.

I wholly agree that it is a neurological disease, not in the mind but I still believe that how we react to it mentally is half the battle. I spent decades fighting it, pushing myself too hard and ending up crocked just to keep other people happy. I was terrified of being seen as lazy; I was absolutely desperate to recover, and extremely unhappy and frustrated.

Over lockdown that pressure was removed and it was a complete liberation. I learn to accept that this is how I am. I am fairly certain I’ll never recover completely (though many will). I’m okay with that. I make the most of the good days and surrender to the recovery days. If I’m ill I don’t beat myself up and remind myself of all the things I need to do. They’ll just have to wait for another day.

My DH is great and really supports my adjustments. We have longer holidays because he understands I’ll be in bed for the first week after the journey, so I don’t feel any guilt for wasting our holiday. If I have an appointment I’ll make sure I rest the day before and write off the following day or two.

Even though I’m no better physically, I’m so much happier and more at peace. I don’t give two hoots what other people think of me and I don’t feel any guilt or pressure.

No, ME is not due to the plasticity of the brain and symptoms being hardwired in. If it were so easy to “hardwire the symptoms out”, then nobody would have ME. Nobody in their right minds would choose to live like this.

Posts like this are incredibly harmful and it often makes sufferers feel like they just aren’t trying hard enough to recover. Parkinson’s is a neurological disease too, would you tell someone with Parkinson’s that their debilitating symptoms can be hardwired out?

It’s great that Neuroscience is helping you with your mindset, but it is not a cure for ME and it is not causal of ME. It is very important to distinguish between the two.

@R0ckandHardPlace I agree, acceptance is one of the key things one can do to manage this disease; although it can take a long time to get there. I too used to ‘boom and bust’ (and I’m still guilty of it now). As I got older, I’ve accepted it for what it is, I manage it the best way I can and I prioritise my energy spending for things that matter to me. It’s important to be able to enjoy things for yourself as others without ME do not have the same challenges.

If I want to spend some time baking with my DC, then a duty visit to a relative is cancelled. I no longer feel guilty.

Trauma, autistic burnout, etc don’t cause CFS. It’s an immune system dysfunction. It will most likely to have been caused by a virus like Epstein Barr Virus (EBV) ie glandular fever. Mine was. Most people contract it as a child and have no issues. Those who contract it for the first time as an adult are likely to suffer lasting side effects.

I’ve had EBV at least once more since my initial infection with it that caused my CFS. I don’t form long term antibodies to it. I don’t form long term antibodies to anything anymore. If I was vaccinated for a condition prior to CFS then I’ll have the long term antibodies detectable by a blood test. Anything since then - no. I’ll get short and medium term but not long term.

I have painful lymph areas on my body. I never used to have them prior to becoming ill.

If you have thyroid issues or food intolerance issues then that’s not CFS. You need to get them diagnosed, treated and managed. You need to exclude them from your illness symptoms. I have two major food intolerances. I have them under control. If I didn’t I’d have diarrhoea, nausea, low iron and feel exhausted. Doesn’t mean that those are part of my CFS just because I have CFS. They’re food intolerances. One pre-dates the CFS and one I have a gene for it so nothing to do with CFS.

Hormone imbalances aren’t CFS. Again, get diagnosed, treated and manage it long term.

Graded exercise and CBT are a crock of shit for genuine CFS.

Great thread, watching with interest. I had Covid for the first time last summer and have been shocked at the time it is taking to recover fully.

Get your b12, folate and full iron panel checked. I was fobbed off with a CFS diagnosis when in fact my b12 was critically low, and potentially irreversible (i had neurological symptoms, memory loss, falling over) im now on b12 Injections every other day until symptoms improve and will need them for life

I agree with all of this.

It’s really important to learn how to pace so you can avoid Post Exertional Malaise, or PEM. PEM is the crash you get when you’ve done too much. It’s not just unpleasant, it’s really bad for you and can actually lower your baseline.

It isn’t enough to listen to your body to avoid PEM as our body doesn’t warn us early enough. A much better way is to try heart rate monitoring - your heart rate goes up immediately when you use more energy, even if all you are doing is lying in bed or writing an email. Heart rate monitors show this in real time and can be an eye opener when learning to pace.

The best heart rate monitor for people with ME is the new Visible app which has been
designed specifically for people with ME and Long Covid (www.makevisible.com). The heart rate monitor is a standard Polar model which you wear on your arm, but what makes it stand out above anything else is the app which analyses the heart rate data in real time. It keeps a tally of how much energy you have used through the day and warns you if you’re going over your limit. It also has built in breathing exercises to help you relax. You have to pay an ongoing membership fee (£10.99 a month) plus an initial £65 for the wearable device, and you need a compatible smartphone. There’s also a free version which you can use to keep track of your symptoms, but the real value is in the paid version.

Graded exercise and CBT are a crock of shit for genuine CFS.

@FeralWoman I agree that Graded exercise can get in the bin, but i genuinely believe CBT is useful. It won’t make any difference physically, but it can help you cope with it a lot better.

I think that because we’ve spent decades being told that it’s all in our heads, it can make us resistant to any psychological therapies. Cancer sufferers are offered therapy to help them come to terms with, and manage their illness, and nobody suggests that they’re imagining it.

Apologies, I must have misunderstood the OP, I was under the impression that she was living with it, but had no support from her GP in investigating thoroughly and therefore being able to get a better understanding of helping herself.

I certainly didn’t mean to offend, I didn’t think there was a singular cause for CFS, and therefore was just sharing some thoughts on things to consider, which yes can potentially be treated in their own right.

i didn’t have a great experience with my GP, who said I was just severely depressed, when I could barely get out of bed for six months. I wasn’t.

i do have an autoimmune disease which has been managed well for 12 years.

my six months episode also started 6 months after leaving an abusive relationship, I had six ‘manically happy’ months, then suddenly I was barely able to leave the house. I now experience mini episodes where any tiny conflict means I’m cancelling all plans and retreating for 3 days, often not getting off the sofa except to go to bed.

OP, feel free to ignore my previous post.

@FeralWoman Agreed. I am also EBV positive and had severe glandular fever preceding ME diagnosis.

EBV is one of the nastiest viruses on the planet and research has shown we have massively underestimated the consequences of contracting this virus. It can alter or destroy your whole immune system and lays dormant in your system for life, often reactivating at times of immune system vulnerability. It’s also linked to MS and certain cancers.

True, I’ll rephrase myself: CBT is a crock of shit if you’re being told that it will cure your CFS. It won’t because CFS is a physical illness, not a psychological illness. CBT can give better coping skills to manage the illness, your mental health, and your feelings about being unwell.

Graded exercise remains a crock of shit. It’s actually harmful.

@MESecond My ME onset was also after glandular fever at 15. I’d had it for the first time when I was 7, and I’ve had it again in my twenties.

Yes, EBV is a horrendously damaging virus. I don’t know why a vaccine hadn’t been developed yet. There needs to be a vaccine for it. DH used to work in MS research and EBV was a nasty culprit in the cause of MS, along with low vitamin D.

It fries my head that they’re still pushing GET, when studies have proved over and over (along with the anecdotal evidence of sufferers) that it is so desperately harmful.

I also get frustrated when people can’t understand the difference between pacing (which is vital) and graded exercise.

Look into natural dessicated thryoid treatment. If you can afford to buy it privately (NHS don't prescribe any alternative medications, despite their rigorous testing and vast success rates- because they don't give a shit about thyroid conditions). It doesn't work for everyone, but if you're at the point of being willing to try anything, look into it.

Try some multivitamins too, and extra vit C and D (they need each other to absorb better) and B12.

There's no cure, only routes to make life manageable. Therapy of some kind to help you accept this will help.

My DD had CFS as a teen. NHS and private vonsultants could offer nothing that worked.

The Breakespeare Clinic in Hemel Hempstead got her back on her feet in three months.

Caveats: this was 20 years ago, and mainstream medicine might have moved on. The treatment plan with the Breakespeare Climic was not cheap.

I’ve read about that clinic. Didn’t the Dr who ran it get struck off? What type of treatments did they offer?

So glad to hear your DD recovered!

I agree about Ebv, I believe that was what triggered mine as well. Ebv is also frequently reactivated by covid, which I think is part of the reason that many people get ME after covid, although the covid virus itself is a nasty one and does a lot of damage itself. They are a lot of studies that have been done in the last few years that show that a lot of chronic illnesses including autoimmune diseases and various cancers and even things like heart attacks and strokes can often be triggered by viruses. I think as a society we drastically underestimate the impact of viruses on the body because we tend to only look at the acute effects and not realise the long term impacts. It's going to take a while for a lot of doctors to realise though because they are unfortunately quite resistant to change and prefer blaming every illness under the sun on stress.

I’ve also wondered if chronic Long Covid is actually ME, but just with a specific virus responsible for the onset. As in, symptomatically, it seems no different to ME at all.

I think Long Covid is broader than ME, so people can definitely get ME brought on by covid but there are also a lot of other post covid conditions that wouldn't come under ME if that makes sense?

Long Covid is CFS plus respiratory system. It’s same but different. They get an extra bodily system that’s messed up.

There can also be also vascular issues with Long Covid, things like strokes, blood clots, arterial stiffening can be triggered by the virus. There's also neurological issues but I'm not sure whether they are different to ME neuro issues.

@LuckyHare Yes, that makes sense. My dd has Long Covid, and her symptoms seem no different to mine. Yes, she has breathing difficulties, but so do I with ME. We also both have POTS.

💐 I'm so sorry your dd is ill as well, it's such an awful illness. Yeah POTS is common alongside ME and Long Covid I think, I suspect I may have it myself as I feel dreadful sitting and standing up and a lot better when lying down but I haven't been tested for it.

If s/ he did get struck off, I didn't hear about it.

They did tests for glandular fever. The ones done by the NHS came back negative, but the more comprehensive ones done by Breakespeare showed two different strains. So, anti/retro virals for that.

Then they did tests for heavy metals, and found she had higher levels than she should have. So drugs to purge those.

Can't remember what else, but I do recall her having to down about a small cupful of pills every morning.

It worked, though. Within a few weeks she was up and about, and after 3 months she had her normal energy levels back. ( And she unilaterally stopped taking the meds without telling me, cos they were a chore and she was a teenager. She almost immediately relapsed.

After about 2 years we tailed off the treatment, and she got on with her life.