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First of all my sympathies. Never nice to be sick even worse when it's unexplained.
I unfortunately have had lots of experience with CFS. Here is what I think:
Don't do anything based on random googling, what people on here say etc. unless there is real peer reviewed evidence for it. Think of any health fad you've ever heard of and google it (Detox, gut microbiome, exclusion diets, supplements, therapy, lightning process etc.). You'll find someone who claims it cured them of CFS and others who will happily take your money. I'm not saying that they are lying but there is no evidence for any of these treatments. No one person knows what made them better. It could have simply been the passage of time and they are claiming it was the goji berries they eat.
You need every other cause ruled out (physical and mental) before it can be confirmed as CFS. This will take months/years. hopefully you won't be sick that long!
So having said that here's my advice:
In the absence of a diagnosis, give yourself every chance of healing yourself. Eat sensibly, try to get outside a bit, rest loads and try remove any sources of stress. Plenty of documented evidence for all of these.
The hardest thing is to just do these simple things and not look for a miracle. But I've been in patient groups where people have spent 40 years following every faddy cure/diet and have certainly made themselves worse.
On the plus side many people get better especially ones who realise early that they are sick and don't push themselves too hard.
So in short:
Rule out other causes, No fads without real evidence, eat sensibly, try to get outside a bit, rest loads and try remove any sources of stress. Boring but really important.
DrP nails it
I work in an ex coal minimg community. We don't see much cfs
We just see loads of shit life syndrome instead.
It amounts to the same thing though.
Stuff that isn't medical but gets presented as medical symptoms because we medicalise everything in life.
Apologies to the op if you thought I was being negative, was not my intention. Just thought it might be helpful to know that the duration of symptoms wouldn't be considered enough to give you the label of cfs. The reason being that chances are it will improve regardless of what medical science or Woo Woo you participate in.
But, anyone who claims they are clearing toxins from your body is dealing in Woo Woo.
Unless the phrase "I'm removing toxins from your body" is said on a renal dialysis unit....
DrP
Well this certainly triggered some trolls didn't it!
I get tonsillitis on a fairly regular basis, and it can take a few months to feel 100% again after a bad case, I was certainly knocked out for a good two months after a really bad one last year. Still too scared to get them out though, even though I've been offered.
I've been thinking of trying gluten free, sometimes when I eat certain kinds of bread my stomach swells so I look 7 months pregnant, it's truly spectacular and quite alarming, I wish I'd taken a photo of how it looked at the weekend to annoy the trolls here, except everyone would see my peepee. I love pasta and beer though so have failed to try it so far, the swelling usually goes down the next day.
https://www.ncbi.nlm.nih.gov/pubmed/23648697
If we want to play the scientific rock paper scissors game. Interesting that the very people who originally postulated gluten intolerance, Gibson et al were so unsure of their own findings they did further research and ended up refuting their own conclusions. Unfortunately the uninformed quackery brigade jumped on the initial research as it pandered to their world view. MMR all over again?
Sorry bigJim but resorting to insulting people who don't hold the same view as you by calling them trolls is a pretty weak defence of a weak viewpoint.
On an interesting a (and personal) basis, I avoid bread, fizzy drinks, and milk.
I'm not allergic, or even likely to be having a gluten +ve reaction. It's just that I feel bloated, 'gutty', and crap when I eat that stuff.
And I don't want to feel bloated and crap, so I avoid it.
I'm sure there's basis and rationale in people avoiding certain foods to avoid certain feelings - if you do this, it's quite annoying for you to go around telling everyone you're "x foodstuff intolerant, yet that was never picked up on a test". Just avoid the food, and feel better!
DrP
You have my sympathy - I had something very ME/PVFish after several pretty hardcore bouts of malaria (Falciparum and Vivax flavours). I think it has more or less passed now, but to be honest it was that severe for a couple of years and gradually declined over the subsequent 20 years that I am not entirely sure one way or another.
It was horrible though.
Don't really have any advice. I was a mess for a bit, and was at Uni at the time so found it very difficult to get through it (the course that was), between recurring bouts of malaria and the absolute physical and mental exhaustion that followed (and remained) it was pretty nasty. I just had to carry on and try to make my life work.
Good luck!
Nothing to help the OP perhaps, other than I hope you feel better soon, but maybe some food for thought for those talking about going GF.
I was diagnosed as allergic to wheat a couple of years ago. Asthma, fatigue, migraines, brain fog, sleeplessness, bloated stomach, irritability, generally felt like curling up into a ball and crying! Which I did, on a frequent basis!!!
After diagnosis and giving up all things 😈 wheat infested ( and that's a lot of food), I've got my life back. New job, (I was a baker!) no migraines, sleeping at night and loads more energy. I'm still irritable, but that's just me 👿
Don't really have any advice. I was a mess for a bit, and was at Uni at the time so found it very difficult to get through it (the course that was), between recurring bouts of malaria and the absolute physical and mental exhaustion that followed (and remained) it was pretty nasty. I just had to carry on and try to make my life work.Good luck!
Well done, you got yourself a proper disease. Malaria can do all sorts of nasty things that could be confused with ME/CFS, like cause actual observable brain damage/cognitive effects in the case of cerebral Malaria.
Am I missing something. I thought that there were a number of recent well respected findings that pointed to a definite physiological cause of CFS - immune system &/or cell 'energy cycle' defects, cure/remission after treatment with Rituximab.
Also, hasn't CBT & GET been discredited as treatment for CFS - PACE trial?
@ whimbrel - ISTR one of the PACE trial chaps was defending his viewpoint in New Scientist a week or three ago.
https://www.newscientist.com/article/2121162-metabolic-switch-may-bring-on-chronic-fatigue-syndrome/
This one? Pretty cool read, I'll be keeping an eye on the research from now on - as, if they are right - then I should imagine it opens a range of interesting questions.
The objection to the PACE trial focussed on the statistics employed. The PACE chap was concerned about the release of personal data. That NS article sure is interesting though. ISTR that, in the past, all the UK research money in ME went to the headology docs.
Yes, that NS article sums up the studies I've come across.
I can't keep 'pace' with the conclusions/meanings of the PACE trial. Hopefully those that need to understand it are on it.
Hopefully the future money will go in the direction that the latest knowledge suggests.
PS: OP, hopefully your symptoms will sort themselves out sharpish.
Tha PACE trial challenge opens some interesting questions. If I'd taken part, I'd have expected the data to be rendered anonymous before release. I guess there are protocols for this. Then if there were further developments, good or bad, to the benefit of the wider public, there's no objection to the release of the data. Indeed, I'd expect it to happen.
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.
DrP - really? I'm shocked at the above frequency, that is certainly an eye opener. But it's also sad, a symptom of 21st century life where you wonder if we've actually progressed beyond sending young boys up chimneys.
I work in an ex coal minimg community. We don't see much cfs
We just see loads of shit life syndrome instead.
docrobster - genuine q, is this passed down from generation to generation? What do you think would help, is it purely due to lack of employment opportunities?
If we want to play the scientific rock paper scissors game.
stumpyjon - is that aimed at me? I came across a paper that certainly opened my eyes and thought others may be interested to read it. What do you think?
flowergirl - wow, quite a game-changer there! Do you miss baking?
very interesting article that..
[i]probably 2-3 times a day I challenge people on their job choices[/i]
I've seen a report about the number of well-educated young females stuck in roles that are below their abilities, and who are depressed as a reult. Might this be part of the problem?
Easy back on page one
mitochondrial dysfunction which she says is related to CFS/ME
I call shenanigans
Lol *said in cheesey tv voice* are you dead or suffering poor growth, loss of muscle coordination, muscle weakness, visual problems, hearing problems, learning disabilities, heart disease, liver disease, kidney disease, gastrointestinal disorders, respiratory disorders, neurological problems, autonomic dysfunction and dementia. If so, you may be suffering from mitochondrial dysfunction - call today for your expensive as **** consultation.
Sorry bigJim but resorting to insulting people who don't hold the same view as you by calling them trolls is a pretty weak defence of a weak viewpoint.
lol
I avoid bread, fizzy drinks, and milk.
I'm not allergic, or even likely to be having a gluten +ve reaction. It's just that I feel bloated, 'gutty', and crap when I eat that stuff.And I don't want to feel bloated and crap, so I avoid it.
I really should try that though I can't imagine not having milk or cheese. I have a gluten free dairy free vegan friend (except for fish and weird bulls bile supplements) and the stuff he eats looks horrendous, all weird processed fake cheese, gm soya processed 'milk', processed protein like quorn, I can't bring myself to eat it.
bigjim, I found that switching to lactose free milk and avoiding cream was enough dairy avoidance to make a huge difference to how I felt. Still have butter and real cheese, not masses of it, but enough! But recently I tried raw milk and that seems to be OK for me too, it's supposed to be far easier to digest......
cinnamon girl, don't miss working as a baker as it was killing my health, and I've pretty much worked out how to bake wheat free. I'm quite lucky cos it's a wheat allergy rather than a gluten intolerance, but I know about it if I get it wrong as I just fall asleep for a few hours! It's very strange 😯
I've seen a report about the number of well-educated young females stuck in roles that are below their abilities, and who are depressed as a reult. Might this be part of the problem?
Why just educated females? We are all sold the dream that if work hard, give 110% etc that we will succeed and have wonderful lives. But it is just not a dream that society is set up to deliver, so we waste our youth grinding ourselves into the ground for the benefit of a minority, then when we wise up and want to break free and live a life of balance, start taking time for ourselves and be a bit more sporty it's too late, we are middle aged our bodies are in natural decline and just can't deliver what our hearts and minds want.
Dr P - well said
Myself (remember I am a nurse) - I get some fatigue symptoms and other odd symptoms but all very vague. Lymphatics glands permanently inflamed, night sweats to name two. Been under investigations for a while - low vit D is the only thing found. Nice chat with the GP about it all today. Thats basically the end of the line for him for looking for things. I haven't had the night sweats since starting taking Vit D. He suggested a few other courses of action none of which particularly appeal. I'm not particularly troubled by my symptoms and am very unsure how much of it is in my head.
I am convinced there is a series of things probably endocrine but very subtle that cause these chronic fatigue symptoms but at the moment its simply in that big grey area called "unknown to medical science". There are probably multiple causes as well including as DrP so elegantly said lifestyle. Is this an "illness"? Hard to say
One interesting thing he told me was a study which showed that if you gave people with chronic fatigue SSRI antidepressants even if they showed no signs of depression 30% reported improvement.
I think the answers lie in the area where neurotransmitters and hormones and nervous system interact and treatments will be found.
Myself? Vitamin supplements, I shall wear shorts more and be careful with my diet and see.
As fatigue is a stress symptom, have you been activating your flight/fight response a lot lately?
1) been taking any stimulants, coffee, coke, red bull etc?
2) have you been extremely worried in your job or private life?
3) how worried are you about the way you feel? Do you worry, analyse, ruminate, google, research cf on a daily basis?
Xcracer - not for me. Basically happy and relaxed. Overdo the red bull to adjust to shifts but also go days without any.
Tjagain - what job do you do? Could it be stress from this? Deadlines, workload, lack of sleep maybe?
C-g it's well known that being poor makes you ill. The inverse care law was first proposed in 1971.
I'd recommend "the health gap" by Michael marmot if you want to learn more. People are born with disadvantage or advantage which is fixed and virtually never changes in life. Those with more disadvantage have worse health and much shorter [b]disability free[/b] life expectancies than those with advantage. They may live nearly as long but more of their life is ruined by ill health.
Today we had some alcohol training. Guess what. People in deprived areas suffer more harm from the alcohol they drink than people in well to do areas who drink the same. Makes you think. Only a fairer society will improve the health of society overall.
In my experience rather than telling people they've made bad career choices (although this is sometimes the issue) it's more about helping people through the minefield of benefits, poor housing, debt, domestic violence, family break up etc etc that fills my week.
Psychiatrists call it "acute psychosocial crisis" we GPs call a spade a spade and a shit life a shit life.
Sorry to hear you've been ill so long. Feeling unwell for a prolonged time is unbearable especially when you have no idea why because this means so much uncertainty and can consume your thoughts. You say you gave up diary, wheat, sugar, processed food and fruit 4 weeks ago which seems like a bad idea to me. It could be quite a shock to your system. If you think a dietary intolerance might be making you feel unwell why not eliminate one thing at a time for a few months just to see if you feel healthier. What one person can tolerate another can not but cutting out every item that anyone has ever had an intolerance too seems silly and could cause you more unnecessary stress with meal, planning, limiting enjoyable social eating situations and removing the chance of a nice treat now and again (slice of cake after a ride for example). It just seems to me like another chance to stress out and set yourself up for failure if you don't end up sticking to your new diet.
Nothing wrong with choosing, healthy balanced diet to boost yourself though.
I find that eating a lot of organic vegetables from my veg box makes me very bloated and gassy and that toast for breakfast is the only thing that doesn't make me want to have a nap after breakie but I doubt this information will spark a sudden fad of vegetable free, toast based diet plans! 😉
For me the only cure for the brain fog, tired achy spells I get is sunshine and exercise combined but that's been hard to come by of late. Good luck and best wishes.
C-g it's well known that being poor makes you ill. The inverse care law was first proposed in 1971.
I'd recommend "the health gap" by Michael marmot if you want to learn more. People are born with disadvantage or advantage which is fixed and virtually never changes in life. Those with more disadvantage have worse health and much shorter disability free life expectancies than those with advantage. They may live nearly as long but more of their life is ruined by ill health.
Today we had some alcohol training. Guess what. People in deprived areas suffer more harm from the alcohol they drink than people in well to do areas who drink the same. Makes you think. Only a fairer society will improve the health of society overall.
In my experience rather than telling people they've made bad career choices (although this is sometimes the issue) it's more about helping people through the minefield of benefits, poor housing, debt, domestic violence, family break up etc etc that fills my week.
Psychiatrists call it "acute psychosocial crisis" we GPs call a spade a spade and a shit life a shit life.
Great post.
Tom_W1987
So where do you go from here if you were me? Accept it is vit D deficiency and get over it? Keep bothering the NHS? Look with a sceptical eye elsewhere? I still have vague unexplained symptoms which I perfectly accept could be part or all in my head
Agree with you about the quoted post
xcracer1
I'm a staffnurse in a difficult job. One I enjoy and am good at and well within my capabilities. I'm not under stress. I have been in the past, I know what its like
[url= https://www.sciencedaily.com/releases/2017/03/170309120626.htm ]Low gluten diets linked to higher risk of type 2 diabetes[/url]
Makes sense as less gluten is going to less fibre and possibly getting carbs from sugary foods
We thought my wife had CFS or post viral fatigue, GP flat denying there was anything wrong with her.
Turns out she had primary hyperparathyroidism from a tumour that could have been diagnosed about two years earlier if the GP was prepared to spend the money on the extra blood test.
Don't assume your blood tests screen for everything. Mostly it's a standard suite, and it'll be the same time and time again.
Very interesting thread, that's all I have to say.
Sorry to hear that science officer
It's not about the gp not spending money on expensive tests though. We aren't billed for the blood tests we order. Yet
bigjim, I found that switching to lactose free milk and avoiding cream was enough dairy avoidance to make a huge difference to how I felt
I should try that stuff, in fact I will. Sitting here with a ridiculous stomach again.
Found this post while looking for a thread on cutting down carbon bars (found [b]cutting[/b] down gluten).
I could write loads about this having had CFS/ME/PVF or whatever acronym you want to use this week.
I struggled for a few years after either Swine flu or a tick bite - not sure which now I look back.
Really tough period of my life and felt like my life was over, couldn't ride, was signed off work, couldn't walk down the street, couldn't socialise and withdrew from my family as I couldn't cope.
I did everything I could to fight back and find a route out of the situation I was in.
Interesting that Dr Myhill is mentioned, now I have recovered (wasn't easy) I believe the mitochondria is a symptom rather than the cause. I also think nutrition is part of the resolution but not the whole answer. I'd also say there is no silver bullet. You also need to speak to the doc to rule out any other issues.
I could ramble on about this for weeks having learnt a whole load about this. If the OP wants to discuss I'm happy to go into more detail.
My advice would be to speak to the Optimum Health Clinic ( http://www.theoptimumhealthclinic.com/ ) THey are doing some amazing work and were the ones I eventually turned to and gave me the tools I needed to get where I am today.
Thanks for all the responses. Especially those that have had experiences. I just wanted to reiterate I didn't say I have CFS.. I said I have fatigue on a daily basis which put me out of action for a month. (Off work)I'm now at the stage where I can do some things but it's very ,very limited. I still can't ride a bike or walk to town
I've researched a lot about causes and symptoms and I totally agree bushwhacked. The mitochondria dysfuntion is a symptom of fatigue ( I've read mldr myhill's book)
I'm wondering if I had an adverse reaction to a tetanus jab? I've heard anacdoetally that some CFS sufferers have had adverse reactions to vaccinations.
I had a tetanus jab in November as the doctors weren't sure if I'd had the right amount of injections as I'd stepped on a rusty nail at the allotment. When I got Ill at Christmas I didn't have a fever, cold symptoms, runny nose etc.
But who knows . you continually search for answers whether it's good for you or not.
I've found meditation has helped immensely. I'm now at the stage where 10 -15 minutes can feel like an hours sleep.
Start a new job in a few weeks, think I'll have to discuss this with them. So glad I have an office job as there's no way I could do a manual job in this condition
Think I'll message some people privately .
Interested to know how you recovered bushwhacked and what you think caused it. Are you at 100% now?
Also went thru a lot of stress in December due to applying for a new job and the dilemma of leaving my very comfortable job with many perks coupled with me being the main earner in the house supporting my family
Theres no disease labbled "mitochondrial dysfunction" there are a group of mitochondrial disorders that effect about 5.7 per 100,000 people.
Are you one of those?
Where has anyone said it's a disease? You really have trouble reading don't you ?
Have you read any research papers on fatigue and mitochondria?
I have and most of them are itter rubbish. Dysfunction implies underlying disease.
http://scienceblogs.com/insolence/2008/08/22/why-the-whole-mitochondrial-disease-plus/
Theres some bits in there on fatigue as well, note how many of the fatigue researchers also crop up in fubious autism studiea.
Get checked out for hyperchondria instead.
And i regards to Myhill....
Lol