Viewing 40 posts - 1 through 40 (of 115 total)
  • Chronic fatigue/PVF
  • trickydisco
    Free Member

    I’ve noticed a few threads on here from years ago about chronic fatigue/Post viral fatigue.

    A bit about my situation I picked up a nasty virus on christmas day (2016) which resulted in huge amounts of fatigue,brain fog, dizzyness, pins and needles, Heat on my back. It’s been a very slow recovery. Been to the docs 3 times had numerous blood tests and everything has come out normal. The doc said they can’t diagnose CFS or psot viral fatigue. tbh.. the doc has been utterly useless.

    I’ve been seeing an accupunctuist which has actually really helped. He has said 1 issue is I’ve got a build up of toxins in the body and that accupuncture has helped to removed those. i’ve and 3 sessions and every one has so far resulted in different experiences

    It’a now been over 2 months. I’ve not been on the bike since christmas eve which is the most amount of time i’ve been off the bike in 9 years! this is coming from someone that used to cycle 20 miles a day to work, lift weights in the gym 2-3 days a week and compete in cyclocross races. I’ve lost muscle mass.

    I can safely say this has been the worst 2 months of my life so far. It feels like i’m trapped in someone elses body. I’ve been doing lots of research on this. I obviously can’t tell if this is adrenal fatigue or chronic fatigue.

    I noticed last week a website from a doctor that specialises in CFS/mE http://www.drmyhill.co.uk/ where she has devised a test for mitochondrial dysfunction which she says is related to CFS/ME

    for the people that have commented on threads about this or know anyone with CFS/Post viral fatigue what have you found that has helped? I’m led to believe that Post viral fatigue can feel like CFS but CFS is only recognised past 6 months?

    I have certainly got better over the last month where I can now walk to the shop and take my boy to the park but i really do have to keep on top of my energy levels. I have been on reduced hours at work and now having to drive. All my bike (7 of them) are gathering dust 🙁 I find it unbelievable that the NHS can do nothing for it.

    If things continue I will think about seeing a private doctor that specialises in it and can for arenal and mitochondrial function tests.

    Tom_W1987
    Free Member

    been seeing an accupunctuist which has actually really helped. He has said 1 issue is I’ve got a build up of toxins in the body and that accupuncture has helped to removed those. i’ve and 3 sessions and every one has so far resulted in different experiences

    Hnngggggggggggg……must….redist….bait.

    cinnamon_girl
    Full Member

    I think as a first step it would be worthwhile addressing the gut. Good quality probiotic and start making dietary and environmental changes. Knowing your vitamin and mineral status would be helpful in case you have any deficiencies, lots of companies offer private testing.

    Think about what you are eating so try to ditch any junk, use proper butter rather than synthetic, coconut oil, good fats, reduce grains. If you can afford organic meat good, if not then avoid supermarkets and go for grass fed from farm shops, go easy on fresh fish.

    Consider stopping antibacterial products, fluoride toothpaste and mouthwash, use filtered water.

    NHS doesn’t recognise adrenal fatigue, only Addison’s. Dr M is the expert on CFS and her website is a good source of information. Read, read and read some more.

    IANAD and wish you good luck in improving your health.

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    trickydisco
    Free Member

    Presumable you know accupuncture is recognised by the World Health Organsiation. The NHS also refer patients for accupunture.

    like to see what you do if the nhs effectively slam the door in your face with regard to treatment. Would you suffer in silence or actually go out and seek alternative therapies? Yes, some people think it’s quackery but try having debilitating fatigue that ruins your life as you know it I;m sure you would look at ways of being treated (like i have)

    shermer75
    Free Member

    If the acupuncture works, then crack on! Let the haters hate lol 🙂

    trickydisco
    Free Member

    Yes, the accupuncturist (George Cooper) specializes in Nutrition as well. Around 4 weeks ago i gave up wheat,dairy, sugar, fruit and anything processed). I feel this has helped and i’ve always subscibed to the minimising bad carbs

    i’ve been taking vitamin d3 for several years now. We only eat organic in the house (my other half works for the soil association) and i never eat marg, cereal etc

    cinnamon_girl
    Full Member

    trickydisco – ignore Tom, he spouts rubbish. He thinks I’m the Queen of Quackery. 😆

    Tom_W1987
    Free Member

    Not for flushing toxins out of the body, though hahah. What next, NBC teams using accupuncture in decontamination protocols?

    shermer75
    Free Member

    CFS is a properly shitty, life changing condition and my sympathies are very much with the OP.

    To be honest pouring scorn on the one source of hope in an otherwise incredibly difficult situation is a remarkably insensitive and quite frankly damaging approach to take and I sincerely hope that someone who would say that is in no way involved with health care

    stumpyjon
    Full Member

    Your acupuncturist is a quack. Why give up wheat & diary, middle class twaddle. Balanced diet and exercise. The only supplement most people need is vital D. Probiotics don’t work unless done under medical supervision, they need to balanced to your gut and the bacteria levels needed are well in excess of what your average over priced yoghurt gives you.

    Not saying some of the quackery doesn’t help, but it’s placebo effect. Unless they can explain the active mechanism it’s quackery.

    sofaboy73
    Free Member

    couple of friends of mine who were both very sporty and active have both had CFS / PVF at one time or another. both of them came to the conclusion that it was much a psychological / mental health issue as it was a physical illness – and by this I don’t mean psychosomatic – in very much the same way that anxiety is ie mental processes / expectations of outcomes in a situation etc can have pretty debilitating physical effects. they both sought help in this area (one via CBT and one via something called the lighting method) and they reckon it was the single biggest improvement they saw in their condition. both are now back to their previous very active / sporty selves although it did take a while for one of them. only based on a sample of two, but it worked for them so worth thinking about?

    trickydisco
    Free Member

    stumpyjon> So exercise is something i should do with chronic fatigue? 😕

    Maybe worth you reading about the effects of diet on the body and what can happen if you eat wheat,dairy and fruit.

    cinnamon_girl
    Full Member

    PM sent. 🙂

    trickydisco
    Free Member

    I have indeed heard about the lightening process and have heard anecdotally that it has helped a friend of my others half’s parents.

    Ive heard some fatigue sufferers it can be due to too much stress in the body (raised cortisol) and not being able to switch off the flight or flight response (chronic stress). I do believe that in some its a neurological condition and others its after a virus or infection.

    kcal
    Full Member

    While I don’t come under the heading of a CFS/ME sufferer by regard to many above (c_g) — I’m aware that since I was a teenager, I would be laid pretty low by a cold or similar, energy levels would be shot to pieces. Here I am 40 years later and nothing much has changed. Agreed with sofa boy that some of it is mental / stress related, as it co-incides with pretty low moods and lack of self-esteem, isolation and what have you..

    Nico
    Free Member

    the doc has been utterly useless.

    There was a time when doctors faced with symptoms they couldn’t help with would give you some sort of placebo. They tend not to do that anymore and are more open. This is a GOOD THING.

    It’a now been over 2 months. I’ve not been on the bike since christmas eve which is the most amount of time i’ve been off the bike in 9 years! this is coming from someone that used to cycle 20 miles a day to work, lift weights in the gym 2-3 days a week and compete in cyclocross races.

    Over-exercising often SEEMS to be associated with these sorts of symptoms. You can chase an endless supply of alternative therapies in search of a solution. IANAD, but my other half is an aquapucturist, as one of her elderly patients calls it. I’m sceptical. There have been some studies but the jury is very much out.

    cinnamon_girl
    Full Member
    jerseychaz
    Full Member

    First up, you have my sympathy (not that that’s any use!) – my wife has suffered from CFS for close to 10 years, sometimes she’s good othertimes it’s miserable. We’ve tried all sorts of stuff including acupuncture which seemed to provide some benefit for a period of time. GP’s love a diagnosis of ME/CFS – means they can shoo you out the door as there’s very little provision for treatment – the only thing NICE recognise is Graded Exercise and CBT and the jury is very much out on whether that’s appropriate or not (the research paper they relied on is arguably very flawed). In answer to those above who suggest that it is “mental” we would say that there’s a fundamental medical issue underlying the condition – see this link http://www.meassociation.org.uk/news-too/ but the maifestation can be partly mental usually borne out of frustration at the lack of cures and inability to carry on anything resembling a normal life. Unfortunately the internet is full of information ranging from improbable to incredible and all sorts of bullshit inbetween. Here in France it doesn’t even register on the medical radar….

    northshoreniall
    Full Member

    I know, terrifying the varying fonts, font sizing and line spacings!! The horror.

    Or do you mean that the commissioners need to review evidence bases and fund according to this and the need of the many over the few? It’s public money being spent so sort of needs to be looked at rather than throwing it away as so often happens.

    cinnamon_girl
    Full Member

    northshoreniall – my interpretation is that it’s giving a psyche label to whom this applies, more handing out of AD’s and left to rot on that scrapheap.

    Feel free to call me cynical!

    FunkyDunc
    Free Member

    Are you depression rather than anything else?

    I assume you are paying for acupuncture? If so, of course they are going to say its good for you.

    Googling is great, it makes you a medical expert.

    northshoreniall
    Full Member

    You are indeed cynical, as we all should be. But you cannot discount there is high probability of psych input in these illnesses if you don’t like it.
    Unfortunately some practitioners aren’t as up to date as others, doesn’t mean they all are or just hand out meds – maybe in your experience as a single user of the system, doesn’t mean it applies globally.

    gonefishin
    Free Member

    I’ve been seeing an accupunctuist which has actually really helped. He has said 1 issue is I’ve got a build up of toxins in the body and that accupuncture has helped to removed those. i’ve and 3 sessions and every one has so far resulted in different experiences

    Whenever anyone says something like this it should set off all manner of alarm bells in your head. “build up of toxins” is such vague load of tosh. The only way you will have a build up of toxins is if your kidneys and liver aren’t working and you know what acupuncture won’t help that.

    As for acupuncture in general, given than sham acupuncture works just as well as “real” acupuncture (i.e. It doesn’t matter where you put the needles, or even if you use real needles) then I’m going to keep with the opinion of “it’s a placebo”.

    cinnamon_girl
    Full Member

    I don’t think anyone can possibly know if there is a psyche component. The way I see it is that the art of a doctor listening to a patient, as well as observing, has gone the way of the dodo. We have tick box medicine instead.

    Edit: just to be clear this is not a criticism as I’m well aware that doctors have 10 minute consultations and have to think on their feet. It’s a criticism of the system.

    DrP
    Full Member

    The way I see it is that the art of a doctor listening to a patient, as well as observing, has gone the way of the dodo. We have tick box medicine instead.not enough staff or time in the NHS, too much bureaucracy, and unmanageable levels of demand and expectation from patients. as such, some people seek out what they need from alternative sources; namely an unrushed listening ear. Sometimes this is bandied about as ‘medicine’, sometimes it’s accepted that being listened to over the course of an hour has beneficial outcomes, regardless of whether you’re having your hair cut, a massage, or needles stuck in your body

    FTFY, in my opinion.

    DrP

    DOI – my wife, a doctor, offers acupuncture. I’ve had it. I’ve learnt about it from her. It’s interesting how the outcome can be the same (ie someone feels better), yet the explanation, depending on practitioner, can vary greatly – science/magic/toxins etc etc..

    EDIT – just seen your edit 😉

    Yak
    Full Member

    Me too OP. Horrible experience.

    Back then, my doctor was great and put lots of time into researching this. I was a wreck and would be ruined by a 200m flat walk. I used graded exercise to increase my walk duration and eventually got back to riding a bike again. It took me 18months to be able to ride 20miles. I didn’t research anything else (I didn’t want to know), just did progressively longer distances, but backing off when symptoms appeared. Sometimes I would be knocked back a week or 2, but then I just backed off and returned to it later.

    Anyway, it may be different for others, and treatments may have moved on, but that’s what I did.

    Good luck.

    cinnamon_girl
    Full Member

    Glad you’ve seen my edit DrP! Did you have acupuncture cos of an injury and, if so, did it help?

    Care to share your thoughts on MUS? 😉

    paulsmithcb
    Free Member

    Hi
    I had CFS/ME when I was in my late teens after Glandular Fever.
    I spent years having investigations with the Doctor/Hospitals and everything was inconclusive or normal.
    This sadly went on for 15 years until our understanding of food allergies improved and I was advised to start an exclusion diet. After cutting out Gluten/Dairy and certain spices i am now fit, healthy and happy again! I ride several times a week and now in my forties, have got my life back again.
    I would try an exclusion diet and see if your gut has been damaged and this could be your answer. I had all those symptoms you are talking about and now I have none.
    Good luck

    stumpyjon
    Full Member

    Maybe worth you reading about the effects of diet on the body and what can happen if you eat wheat,dairy and fruit.

    I have, have you? Much of what is out there is hippy dippy pseudo science, the whole wheat thing in particular, if you’re celiac that’s very different from being gluten intolerant or any of the other made look at me syndromes that the quacks are pushing to sell books, diets and lifestyle advice to the desperate looking for quick fixes.

    There is a major difference between the rigours of the medical world and the ethics and regulation controlling it vs the free for all of made up stuff. Even then the medics still get it wrong but learn from it.

    stumpyjon> So exercise is something i should do with chronic fatigue?

    Exercise isn’t just beasting yourself on the bike, it can also be a gentle 20min stroll or more, it’s about keeping active, our bodies haven’t evolved to be sedentary.

    DrP
    Full Member

    CG – I’m plagued with MSK injuries/low back pains/neck tension…

    I find the acupuncture in the neck a huge relief. Oddly, it makes me feel sick when the needles go in – I’m a ‘strong responder’ apparently.

    RE MUS – they are just that – medically unexplained symptoms.
    I’ve loads of patients with them. They sound horrible. Their life sounds terrible.
    Sometimes the symptoms are BECAUSE their life is terrible, sometimes vice versa.

    I never doubt the patient feels like they do. It’s just that with current science, and available (safe/reasonable) testing, no clear cause and therefore no clear cure can be found.

    I frequently say the remit of modern medicine is to look for serious causes of an illness.
    Once the standard path of investigation has ruled out a serious cause, there is possible there’s a less serious (i,.e non life threatening) cause for symptoms. It’s just that we can’t identify it.

    As such, management is of symptoms, rather than perpetual hunting for a cause and cure.
    Some people are reassured it’s not cancer/diabetes/lymes/ANother disease.
    Some people see the lack of ‘answer’ as a failing, or worse, as a “doctor doesn’t give a shit”.

    It’s not that modern medicine doesn’t care – it’s simply that we have exhausted current facility to investigate any more.

    There comes a ‘tipping point’ that the hunt for a ‘reason’ becomes so all-encompassing, that this quest becomes a disease in itself.
    That I have also seen…

    DrP

    cinnamon_girl
    Full Member

    Much of what is out there is hippy dippy pseudo science, the whole wheat thing in particular, if you’re celiac that’s very different from being gluten intolerant or any of the other made look at me syndromes that the quacks are pushing to sell books, diets and lifestyle advice to the desperate looking for quick fixes.

    Some folk with very high antibodies in hypothyroidism have been able to significantly reduce antibodies by adopting a g-f diet. Also have heard of folk who no longer need to use an asthma inhaler after having gone g-f. Will leave the science bit til later due to a Lyme-addled brain.

    Tom_W1987
    Free Member

    You’ve heard have you?

    Well, that’s it lads – time to get Public Health England in on this shit, this is a game changer.

    jonnyboi
    Full Member

    Some folk with very high antibodies in hypothyroidism have been able to significantly reduce antibodies by adopting a g-f diet. Also have heard of folk who no longer need to use an asthma inhaler after having gone g-f

    Just asking politely, Has any of what you’ve written there been backed up by appropriate clinical trials?

    docrobster
    Free Member

    Not getting involved in a discussion about quackery, but-

    christmas day (2016)

    Is not that long ago. You haven’t got chronic fatigue syndrome. The usual definition is 6 months of symptoms I believe.
    Your doctor is leaving time to heal the illness rather than pretending to do something active and charging you for it.
    Damn I nearly managed not to make a comment about quackery. Ah well

    DrP
    Full Member

    I would also agree with the above. You’ve had 2 and a bit months of feeling washed out after a self reported illness.
    This in itself is unlikely to produce any ‘positive tests’, and statistically should improve as time goes on.

    I was knackered for 5 weeks before christmas, following my filthy kids licking my face and coughing on me as I sleep (i suspect).

    “The art of medicine consists in amusing the patient while nature cures the disease.”
    A famous quote, that unfortunately is now supraceeded by, I suspect:
    “The art of medicine quackery consists in amusing fearmongering and charging the patient while nature cures the disease.”

    DrP

    cinnamon_girl
    Full Member

    CG – I’m plagued with MSK injuries/low back pains/neck tension…

    Ouch DrP, have you considered a proper bike fit? Could be useful if you’re switching between bikes regularly or doing big mileage. When I did loads of running I swore by glucosamine plus the occasional massage.

    It’s horrible seeing those little needles isn’t it but great that it works.

    Thanks for your thoughts on MUS, certainly enlightening. It must be frustrating for you especially if they’re returning week after week saying the same words. Do you not feel though that some of modern life is causing it, for example multiple chemical sensitivity from household products, mould from water damaged homes/buildings, allergic to animal hair, particular foodstuffs etc.

    Perhaps these patients need to be investigated by someone other than a GP, an allergy specialist for example or more of a functional medicine person (sorry!) who has the time to ask hundreds of questions.

    Your response has been much appreciated. 8)

    DrP
    Full Member

    Do you not feel though that some of modern life is causing it, for example multiple chemical sensitivity from household products, mould from water damaged homes/buildings, allergic to animal hair, particular foodstuffs etc.

    I do feel modern life causes SOOOOO many ailments, but perhaps NOT for the reasons you site..
    I suspect we live cleaner lives now than we ever have, without exposure to all manner of previous air borne chemicals and toxins. Yes, there’s loads of new fumes etc out there, but I think the expectation vs reality of modern life leads to the vast majority of issues.

    I get the impression:
    people can’t or won’t take time off work if they are ill. sometimes, all you need to get better is a day or two on the sofa. As such, a simple illnes is dragged out over many weeks, simply because we didn’t allow ourselves to be ill.
    people don’t allow themselves to be ill. I’m one of the fittest people I know – I’d say that, at best, my health is about 90%. I’m perpetually knackered, I ache, and I get irritable at my kids. Most of that is poor sleep (in at 2300 last nigh, up at 0515 due to LittleP) and work stress. No blood test or scan will pick up those two factors. in fact – my neck and back ache is magnified massively when I’ve had a crappy day at work. interesting that…..
    people work in jobs they hate, to live lives they don’t need. I would quit in an instant if my health really started to suffer, or I saw myself becoming a person I didn’t want to be. Most wouldn’t, so they carry on commuting terrible miles to go to terrible jobs, to never see their kids or wife. probably 2-3 times a day I challenge people on their job choices – that would make a much bigger difference than medication. They all chose the medication.
    we live in an instant gratification world. Some diseases, genuinely, without cure, will get better after a short length of time. It seems the general population are of the belief that medicine should have a way of ‘shifting this illness’ because they have stuff to do. See point 2.

    I can see the frustrations that we can create self driving cars, and wicking clothing, and AI home automation, but we still can’t cure the common cold…

    DrP

    trickydisco
    Free Member

    You haven’t got chronic fatigue syndrome. The usual definition is 6 months of symptoms I believe.

    I didn’t say i had. If you noticed in my post i was asking if Post viral fatigue is similar to CFS. I mentioned CFS isn’t recognised until 6 months. I feel i have the same symptoms as Post viral fatigue as i picked up a virus on christmas day and have had severe fatigue ever since.

    Why all the negativity and baiting in this thread. I am completely consumed by this fatigue of course i’m going to try and find ways to help remedy it. should i just wait until i get better and not alter my diet or lifestyle in anyway?

    trickydisco
    Free Member

    and DRp> I had to take the whole of January off work because i was barely able to walk down the stairs.

    cinnamon_girl
    Full Member

    Just asking politely, Has any of what you’ve written there been backed up by appropriate clinical trials?

    I don’t know, there’s plenty of folk on health forums saying that going g-f has helped them improve their health. In fact I shall soon by going g-f myself so happy to report back. Would also say that not all clinical trials see the light of day, evidence-based medicine may sound reassuring but vested interests come into play.

    Dr Tom O’Bryan is an expert on gluten:

    http://thedr.com/category/all-about-gluten/articles/

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