UKC

Anyone know about condition M.E?

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 AP Melbourne 03 Oct 2018

Constantly drained both physically & mentally.

Hard to even get dressed in the morning or take a bin out - let alone put in a 12Hr+ day. Poor deep sleep....

Aligned with bouts of depression & anxiety and coupled with a few hormonal mid-life-crises?

Utter madness really as can't complain at all about my lot in life but struggling to keep up and awake. Getting seriously worried about driving as becoming somewhat noddy at the wheel.

Thanks,

AP.

 

 

In reply to AP Melbourne:

When did you last have a routine blood test, Andy?  Get yourself to see a doctor.  Lots of pretty common (and easily fixable) things can cause signs like this.

 

In reply to AP Melbourne:

Sounds like old age problems to me  

But as above - speak to a doctor. The internet isn't the place to get an ME/CFS diagnosis. 

 GridNorth 03 Oct 2018
In reply to AP Melbourne:

My son had this when he was in his early 20's.  Doctors didn't want to know and put it down to emotional issues at home which angered me greatly.  We were getting desperate so on another sufferers advice consulted a herbalist who said he should drink lots of beetroot juice.  I was somewhat sceptical and the doctor was downright dismissive but guess what it helped significantly.  Many years later the medical profession seems to have changed tune and have since discovered that beetroot juice can be beneficial as it improves blood flow.

Al

2
 GarethSL 03 Oct 2018
In reply to AP Melbourne:

Are you getting enough iron? Or other vitamins?

In reply to AP Melbourne:

I had something like this 20+ years ago. I was off work for 3 months. Prescribed anti depressants which I took, had counselling and did a lot of reading and resting. I think it was a mixture of over training with a virus, breavements and work issues. One of my mistakes was denial and carrying on working. It took about 2 years to get back to normal. Do see a doctor quick. Lyme disease presents with these symptoms. You might have to do absolutely nothin g for a bit. My doctor said I'd just run my battery flat...

Post edited at 12:15
 Bob Kemp 03 Oct 2018
In reply to AP Melbourne:

All sounds familiar... Having seen my GP and screened out assorted diseases it seems that a combination of the ageing process, medication side-effects and being at the time overweight may have been responsible. Losing a stone has made me feel better, and there's room for further improvement there! The medication side-effects are arguably better than the alternative so I'm living with them. Of course none of this may apply to you...

 Phil Anderson 03 Oct 2018
In reply to AP Melbourne:

I had something similar and it turned out my iron levels were too high (hemochromatosis).

After loads of tests etc. it turned out that it was simply down to alcohol. You don't need to drink all that much for it to effect your iron levels, especially if you're susceptible to it.

Given posts you've made in the past, I think it's probably safe to say that you like a beer so this could be a factor.

Probably not what you want to hear - sorry about that.

Caveat - I am not a doctor etc.

 Timmd 03 Oct 2018
In reply to AP Melbourne:

I get the impression you'd need to discount alcohol, life changes, mental health issues, vitamin deficiencies, and have a few blood tests too perhaps, before thinking about M.E?

I know of a couple of people who have it if you want to get in touch with them after ruling out other causes...

Post edited at 13:11
 ClimberEd 03 Oct 2018
In reply to AP Melbourne:

Aside from the usual blood panel etc. read this. Then you will be in a more educated position to talk to docs etc about M.E.

https://www.amazon.co.uk/Its-All-Your-Head-Imaginary/dp/0701189266

('effing brilliant book written by a neurologist)

In reply to AP Melbourne:

Hi - I had severe (disabled for 3-4 years; sick for 7 years) ME/CFS from age 33 (now recovered - apart from when I try Alpinism!). 

The key symptom of true ME/CFS is Post-exertional malaise / relapse. (this is NOT tiredness). ie. you do something relatively normal one day, and within 2 days (usually 24-48 hours later), you suffer a "crash" of all symptoms - brain fog, sleep disruption, exhaustion (of the utterly feel-like-death sort you get with flu), heartrate issues, muscle weakness/ flu like aches. 

Re. the poster saying "it's all in your head" is a brilliant book; ME/CFS sufferers do not agree with you. ME/CFS is a complex, acquired, multi-system disorder, and telling anyone that their symptoms are partly "in their head" is counter productive and rarely works. Not to mention insulting to those suffering with the condition. 

AP - first stop is full blood tests.  Rest as much as possible until you've got a clearer picture of your situation. I know you were a high performing rock climber in the 1980s. A top fell runner in the 80s, Kenny Stuart, world class in fact, was disabled by ME around 25 years ago, and has never been the same since. So your symptoms need to be taken seriously! Don't let people tell you to "pull yourself together" or that you might be "feeling a little depressed" . Listen you your body!  Happy to help further if required. I do voluntary work in the ME/CFS sector, so have access to a wealth of information should you need it. Phil

3
 ClimberEd 03 Oct 2018
In reply to Phil Murray:

 

> Re. the poster saying "it's all in your head" is a brilliant book; ME/CFS sufferers do not agree with you. ME/CFS is a complex, acquired, multi-system disorder, and telling anyone that their symptoms are partly "in their head" is counter productive and rarely works. Not to mention insulting to those suffering with the condition. 

 

It's not in the slightest bit insulting.  (yes I have read it.)

>

 

1
In reply to ClimberEd:

OK - as i've not read it, and I have no intention of reading it, what does it say about ME/CFS?  I'm genuinely curious. 

Go to the Amazon page, and look at the one star reviews, and read the ME/CFS ones - which is what I did. The first one mentions the following, & if this is in the book, I can assure you this is NOT what patients, carers, charities etc want to hear, or remotely believe (Sir Simon is considered the Godfather of poor research into the disease, and for setting back developments 20 years).  The PACE trial mentioned has now been globally discredited.  It's "recommendations" are being removed from guidelines everywhere - including, as of 2018, the NICE ones (we hope - I attended the NICE scoping meeting earlier this year in London to help steer them). 

"I take issue with the so-called expert in the CFS/ME (Simon Wessley) 'responsible for the largest number of scientific studies into CFS...He devised the most effective treatment programme for sufferers....He is a psychiatrist and has emphasised the importance of psychological mechanisms in the development and perpetuation of chronic fatigue symptoms' The author then goes onto say ' I believe that psychological factors and behavioural issues, if they are not the entire cause, at the very least contribute in a significant way to prolonging the disability that occurs in CFS''
Simon Wessley conducted the PACE trial using tax payers money I think it cost £5 million. Patients were not getting better and many made worse. The patients knew they couldn't think their way or exercise their way out of their illness. CBT and graded exercise were what the trial recommended as an 'effective treatment'. When independent evaluators tried to get hold of the data from the study for their own analysis those that carried out the study wouldn't release the data. The only way the data was finally released was when the court ruled that data has to be made available, it was publicly funded after all. After analysis, it was shown that endpoints were changed and a number of other irregularities came to the surface. If someone was bedridden at the beginning of the trial but could then sit up for a cup of tea, they were classified as cured. For the author to include Simon Wessley's trial in her book then present it as an effective treatment is appalling. For the book to win the welcome book prize winner 2016 is also appalling."

In reply to Phil Murray:

> Re. the poster saying "it's all in your head" is a brilliant book; ME/CFS sufferers do not agree with you. ME/CFS is a complex, acquired, multi-system disorder, and telling anyone that their symptoms are partly "in their head" is counter productive and rarely works. Not to mention insulting to those suffering with the condition.

Being insulted is all in your head, we could get into a recursive loop here pretty quickly!

.

More seriously, I haven't read the book, and don't know much about ME, but nobody should be insulted at the suggestion that something is 'partly in their head'.

A lot of people conflate 'in your head' with 'not real', and that's nonsense. Your head is a real place, your brain is a physical object, and your mind is a property of those plus the rest of you plus your environment.

A huge number of very real problems are partly psychological, and nobody is immune to such. We should be trying to avoid the stigmatisation of these things rather than getting insulted at the suggestion that there could be something inside our head which is working less than optimally.

.

Which is not to say that the original poster's problem is like that. Lethargy and exhaustion are symptoms of a very many things; self-diagnosis is probably a bad idea, and internet diagnosis-by-stranger is definitely a bad idea. As several people have said, the first step should be seeing a doctor and getting the problem diagnosed properly.

1
In reply to AP Melbourne:

The things you're experiencing could be caused by a range of things; anything from ME or even MS to declining testosterone levels or just having run yourself too far into the ground too often.

Getting it checked out by as medical professional is, as many have already noted, not just the best advice but the only advice worth a damn.  And be a little more forgiving of yourself, none of us in our fifties have the capacity to do what we did when we were ten years younger, never mind in our twenties.

T.

In reply to skog: 

Totally agree that an internet diagnosis is the wrong way to go - the OP should definitely see a GP and talk to them first & hopefully, get a battery of tests done to try to work out why he's feeling so rough.  If it's iron or something - great! It can be addressed....

Re. the "partly in your head" bit - we the ME community would wholeheartedly embrace this opinion - if it were correct (and if only it were correct!).  Unfortunately, it's not correct, any more than a broken leg, or bowel cancer, or type 2 diabetes are "partly" "in your head" (I now have type 2 diabetes, by the way), so we vigorously oppose views that can (and have) led to masses of ££ being wasted on expensive and useless trials, when vastly more biomedical research needs to be done.   

When i was sick, I was optimistic, which is in my nature (still is). The result was hundreds of relapses, massive disability, and my illness went on for several years longer than I believe it would have done, had I simply "given up" and resigned myself to resting for 2 years+. Lesson learned. The hard way!  Psychosomatic, even partially, ME/cfs is not. (tho I accept there are people out there who claim to have ME and in fact are probably misdiagnosed and have other medically unexplained symptoms). As I said in the original reply, the key symptom is not being "tired" - it's post exertional malaise (or exertion intolerance) with delayed response. 

1
In reply to Phil Murray:

> Psychosomatic, even partially, ME/cfs is not

That's fair enough (if correct - I don't know about it, and don't have an opinion about it).

But we don't know whether the original poster has ME.

Mostly, though, I was picking up on the notion that it's insulting to be told that a problem is, or may be, 'partly in your head' - it really shouldn't be.

Post edited at 16:22
 johncook 03 Oct 2018
In reply to Phil Murray:

ME/CFS sufferer. Cost me my business, my house, almost my family and, almost my life. It took a long time to get through it and I still have panic attacks when any symptoms which are similar appear. 

Your post is the most valuable so far on this thread. 

To anyone who thinks that ME/CFS is psychosomatic, they are very wrong. I was and still am a very motivated, strong willed and capable person , but that only seemed to make things worse when I refused to accept that slowing down and taking care was what I needed to do to recover.

To the OP. Get to the doctors, get as many tests as possible, if you doubt the doctor get a second opinion, don't take waffle. It took me months to get a proper diagnosis, with waffle about flu, depression, anxiety, unfitness, insomnia, over exertion, etc etc etc. Good luck with getting better. Hope it doesn't take too long to get sorted.

In reply to Phil Murray:

I know that ME sufferers are very against suggestions that ME is psychological. But that's not the same as being "in your head". The brain produces many hormones etc which have huge effects on the body, so you can have physical illness in your head.

I think it's important to be precise here. My wife and daughter were fixed (after 18 and 7 years respectively) by a process that believes that ME is due to some hormone imbalances that can be sorted out by mental techniques to stop the imbalance.

I've no idea whether their "theory" is correct but it certainly worked (dramatically) and from a pragmatic point of view, who cares what the label is if it works.

 ClimberEd 03 Oct 2018
In reply to Phil Murray:

I will have to have a re-read of the appropriate chapter.

The book as a whole is not a textbook, manual or self help manual though. It is a series of case studies from the authors own practice. So it doesn't argue and weigh evidence for this or that, it tells the stories of individuals and what happened to them.

In reply to johncook:

I have a fairly strong opinion that ME tends to hit "doers", lazy types like me don't tend to get it.

Basic test, if you don't properly understand the meaning of the word "relax" then you're at higher risk of getting ME/CFS.

 ClimberEd 03 Oct 2018
In reply to johncook:

>

> To anyone who thinks that ME/CFS is psychosomatic, they are very wrong. I was and still am a very motivated, strong willed and capable person , but that only seemed to make things worse when I refused to accept that slowing down and taking care was what I needed to do to recover.

> On this point only I think there is a misunderstanding of psychosomatic (and this is an important distinction) - it does not mean that you have wilful conscious control over the symptom, quite the opposite - you have no control at all. It simply differentiates between a problem that is located in one part of your body and the same symptom having another location for the 'source'.

I'm sorry to hear about your illness. 

In reply to AP Melbourne: even after all these years a large part of ME/CFS diagnosis is to rule out lots of other things it might be. So the advice to see medical professionals is good, but keep pushing and don't get fobbed off until you feel that any diagnosis correctly covers your situation.

 wercat 03 Oct 2018
In reply to Pursued by a bear:

> The things you're experiencing could be caused by a range of things;

including one of the most common hidden problems, hypothyroidism - can make you feel as if you've totally run out of steam, physically AND emotionally.

 

In reply to johncook:

I'm very sorry to hear it hit you so hard.  In may ways, I was "lucky" as my GP (in 1997!) did none of the waffling about anxiety, insomnia, "perceiving" tiredness etc - he saw a previously fit normal 33 year old almost unable to speak or walk following a severe virus, and sent me to bed for weeks. Sick notes for months. At 6 months, I was barely better, and he gave me the CFS/(ME)diagnosis. Don't go back to work, he said. I credit this approach for my eventual recovery.  (I did try to go back to work for one day, & spent the next 5 days completely bedridden) as a result)

I see Al (GridNorth)'s son also was fobbed off. Some GPs do fob people with unexplained symptoms off. They don't need to do this.  They are allowed to say, we don't know what's wrong with you, and at this stage, all we can advise is rest, listen to your body, and hope that it passes.  

To skog: "I was picking up on the notion that it's insulting to be told that a problem is, or may be, 'partly in your head' - it really shouldn't be" - fair point. Yes, I agree there should be no stigma around any illness, whether "physical" or "in the head".  i had post-ME anxiety, mild depression & feelings of inferiority - they passed - they were all in my head, and I totally acknowledged this, & got myself help. (I'm fine now, btw!). 

 

 Timmd 03 Oct 2018
In reply to AP Melbourne:'Burn out' could be one possibility?

I didn't know what it was until having just gone through it. I'm currently unemployed and studying/exploring getting into long term work (which may be part time to start with), and was going full speed ahead when my Mum passed away, just on me starting my Diploma, I still got my distinction even with a shortened time to do it in, and felt kinda tired after that on finishing it a year later, and a month or two after finishing an opportunity to do my Forest Schools course came up, so I started that (people who have done a degree say it's bigger than their dissertation was to complete the work portfolio) and completed it within a gnat's of the deadline, and in the March of the year I completed it, my oldest bro and fave sis in law moved down south, and my Dad did a few months later. Which meant that in 2,5 half years, I'd lost my Mum, done a Diploma and my Forest Schools course which universities see as being equal to 3 A levels, and had 2 people I'd come to rely on  somewhat move away, and I've more or less spent the 18 months following that getting my head around the different life changes and recharging after all the 'grrrr' I summoned up to get through my courses while I still grieving and dealing with my loss.  

I've got my bounce back again now, and am wanting to get stuck in again, and I'm probably stronger than I was before things happened, but for ages I was just knackered, and (re) figuring out what made me tick again while only thinking as far ahead as the next thing I was doing with a friend, or going out on my bike. I hope it is burn out, rather than ME, because the clearer head once out the other side is great to have. 

Post edited at 17:06
Les Trois Etangs 03 Oct 2018
In reply to AP Melbourne:

> Constantly drained both physically & mentally.

> Hard to even get dressed in the morning or take a bin out - let alone put in a 12Hr+ day. Poor deep sleep....

> Aligned with bouts of depression & anxiety and coupled with a few hormonal mid-life-crises?

> Utter madness really as can't complain at all about my lot in life but struggling to keep up and awake. Getting seriously worried about driving as becoming somewhat noddy at the wheel.

> Thanks,

> AP.


An ME diagnosis has to satisfy 3 conditions;

1. It has been triggered by an event, such as a severe infection.

2. There are symptoms of extreme fatigue, foggy head etc which last for greater than six months.

3. Medical tests show that there are no other conditions which can be causing the symptoms.

The OP suggests that she is overworking, has insomnia, depression, anxiety and hormonal problems. From the information provided it appears that ME is unlikely as the third condition is not satisfied.

In reply to AP Melbourne:

> Constantly drained both physically & mentally. Hard to even get dressed in the morning or take a bin out - let alone put in a 12Hr+ day. Poor deep sleep....

> Aligned with bouts of depression & anxiety and coupled with a few hormonal mid-life-crises?

Depression itself can lead to those symptoms.

 AP Melbourne 04 Oct 2018
In reply to everyone:

Many genuine thanks.

Yes, advised my boss I'd be nipping off early one day next week for bloods.

See how it goes and well done to those of you have/are battled/battling with the various issues noted above.

Best to all,

Andy.

 

 marsbar 04 Oct 2018
In reply to AP Melbourne:

Hope you get it sorted.   It does sound like it could be a few things.  Depression can hit you that way.  Or it could be something else.   

Anyway whatever it is take care and look after yourself.  

Maybe take a week off,  go camping and sleep when it gets dark, wake up when you are ready.  I find a week away can help reboot.  

Post edited at 06:34
Rob Stewart 08 Oct 2018

Regarding "all in your head": there is quite extensive research showing the ME is triggered by chronic stress. That doesn't mean that you can simply push through it -- we know that that simply makes it worse. The only treatment is to rest completely, and remove the stressors that triggered the ME in the first place (usually work, study, or relationships).

I think the best way of understanding it is the central governor model:

https://www.frontiersin.org/articles/10.3389/fphys.2012.00082/full

https://www.theguardian.com/society/2016/feb/15/it-was-like-being-buried-alive-victim-of-chronic-fatigue-syndrome

The central governor is the part of your brain that forces you to stop exercising when it deems that it is dangerous to continue, and it happens well before your muscles reach their performance limit. It's not something you can "think" your way out of, and you can't just push through it (except with extreme difficulty, which is what athletes do).

Unlike when running a race or climbing a mountain, however, in ME the central governor appears to keep reducing the activity limit when you try to push through it, causing worsening symptoms.

I see ME as psychosomatic in that it is the brain deliberately limiting the body's energy capacity due to perceived stress. However this is similar to a viral infection like influenza, which also causes reduced energy capacity (the so called "sickness behaviour") due to the effect of cytokines released by the infection, which affect mood and energy. (Psychological stressors also release similar cytokines from the brain). Viral infections are physiologically stressful, and they cause lethargy and depression similar to psychological stressors. We know from research that both viral infections and stress can trigger ME. These days most scientists use the term "functional" rather than "psychosomatic" because it is recognised that the cause isn't always psychological.

Rob (recovered from ME triggered by a combination of work and personal stressors).

 profitofdoom 08 Oct 2018
In reply to skog:

> self-diagnosis is probably a bad idea

I agree wholeheartedly with that. My experience, and what I've observed in others, is that going to Dr. Google is usually a bad idea. IMO the best use of Dr. Google is to find out much more about your condition once you HAVE BEEN diagnosed by a doctor

To the OP, hope you get better soon and all the best

Post edited at 03:46

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