Post viral fatigue

+1 Grum…

My mate has spent 50 days in ICU witha rare form of pneumonia and is really depressed about it, but did the depression cause the pneumonia? would anti-depresants cure it??

I think the perception I sometime get is that people with CFS get angry with the misdiagnosis of depression, not purely because it’s a misdiagnosis, but because depression is ‘all in the mind’, and thus more trivial and not as valid an illness. I think it’s still a bit unfortunate that there is this perception and that mind is somehow not of the body in some quarters, though this does seem to be reducing now.

Bushwacked – thank you for reporting back. 🙂 Totally understand your post and so pleased that you came away with a good insight. Back on the bmx then? 😉

FunkyDunc and grum – I am in no way belittling clinical depression but what I find rather worrying is how many people are taking/considering AD’s to help them. On this very Forum is a good example. Dare I suggest that GPs are becoming rather lackadaisical, for whatever reasons, and the easy option is to hand these out.

As I’ve said before re my own experience with a thyroid disorder, a GP wanted me to take AD’s because he considered there was nothing wrong with me despite my obvious thyroid symptoms. I’ve had to fight to get to where I am … and the fight is not over yet.

GP’s are given guidelines by the Royal College of Physicians but who’s to say that those guidelines are correct? Or need reviewing? Medicine is evolving because health issues are.

“FunkyDunc and grum – I am in no way belittling clinical depression but what I find rather worrying is how many people are taking/considering AD’s to help them. On this very Forum is a good example. Dare I suggest that GPs are becoming rather lackadaisical, for whatever reasons, and the easy option is to hand these out.”

I agree with what your saying here, perhaps GP’s get very focused on a physical medical condition, or the mental health condition they know most about, probably depression. Afterall they are not Psychiatrist or Psychologist.

It must be hard though when a person walks in saying they have x and y physical symptom and test me for x and y. When in fact they have mental health issues eg Bushwacked and others.

“My mate has spent 50 days in ICU witha rare form of pneumonia and is really depressed about it, but did the depression cause the pneumonia? would anti-depresants cure it??”

No depression didn’t cause it, but certainly depression could slow down his recovery.

I agree with what your saying here, perhaps GP’s get very focused on a physical medical condition, or the mental health condition they know most about, probably depression. Afterall they are not Psychiatrist or Psychologist.

Perhaps the GP system isn’t working? At no time has it been suggested that I see an Endocronologist, furthermore I cba’d to wait 4 months or whatever anyway. GPs apparently are able to deal with thyroid issues, the reality is quite different. I know more about it than my GP for sure hence my only option is to carry out my own research and experiment. Pretty crap really.

Flow, sorry just picked up this thread and suffered from the same symptoms as yourself, are you still suffering? whats the latest?

Well I have come a long way and learnt a lot about myself put it that way.

I have been out on my bike a few times which was nice. I managed an hour off road which at times I thought I might never be able to do again TBH.

I am currently weaning off Mirtazapine (AD) which I asked the doctor for last year to help me sleep. I have had quite a few side effects from the drug and if I could go back I wouldn’t have started taking it.

I gave up my strict diet. I eat what I want, when I want.

My sleep is kind of better now, although weaning off that poison isn’t doing it any favours. I currently sleep best from between 6 or 7 in the morning, to 1 and 2 in the afternoon. I have tried going to bed at the same time every night along with all the the other things you are told to do, but my body has decided that this is the time I sleep, and there seems to be nothing I can do about it. Its better than not sleeping at all though!

I still have a way to go till I would class myself as being “better”, but I remain very relaxed about it and don’t let it bother me.

I totally understand what Bushwacked is going on about and would like to know a bit more on how you go about correcting things if at all possible (you have my email address).

I’m not going to entertain the depression thing. If you met me you would realise I am far from depressed.

Depression is helped by exercise, CFS is made worse, that’s all I am saying.

More GP bashing, nice to see!

There are certainly crap GPs and depression is certainly overdiagnosed but really, the system isn’t broken.

Why don’t you do some research and publish it for humankind’s benefit rather than just whinge about how crap medicine is?

More GP bashing, nice to see!

There are certainly crap GPs and depression is certainly overdiagnosed but really, the system isn’t broken.

Why don’t you do some research and publish it for humankind’s benefit rather than just whinge about how crap medicine is?

I think you might feel a little differently if you had been told by numerous GPs that there is basically nothing they can do to help you with something that is ruining your life, many of whom’s understanding of PVFS/CFS seems to be very limited.

I suspect a lot of GPs’ knowledge of such things is based on whatever information was available at the time they qualified (which probably told them it’s just depression) – and they haven’t bothered/had time to update it.

Do you expect everything to have a cure or even an answer?

People are working on it but science and the advancement of medicine is a slow process. It’s no good getting angry at medicine for not knowing, in fact it’s ridiculous.

Incidentally, one of the lead CFS researchers (who I know) has received death threats from CFS sufferers who don’t like his findings because they are contrary to their beliefs.

Do you expect everything to have a cure or even an answer?

People are working on it but science and the advancement of medicine is a slow process. It’s no good getting angry at medicine for not knowing, in fact it’s ridiculous.

No but I’d expect a GP to have at least a passing grasp of some of the latest useful information about something like PVFS/CFS, or at least be interested in finding out about it.

Again, you’d feel very differently if it was you in that situation.

BTW your attitude is very aggressive/unpleasant – smacks of the intellectual arrogance some in the medical profession seem to be guilty of. Calling people’s legitimate concerns about GPs ‘whinging’ and being ‘ridiculous’ is quite uncalled for really.

You’re right Grum, but I think he has been in that situation if I remember correctly.

Most have reduced interest on account of the sort of attitudes my researcher friend has encountered. It’s difficult to help people who frequently seem to do all they can to avoid taking any sort of advice.

I’ve seriously wondered whether the anger / blame perpetuates the condition or at least prevents recovery- it certainly seems to be an almost universal feature in those who fail to recover (and is present from day 1)

Most have reduced interest on account of the sort of attitudes my researcher friend has encountered.

What, most GPs have CFS patients threatening to kill them?

Wow people with PVFS/CFS are real dicks aren’t they? If only they realised that it’s all their own fault, that would make them better.

Most are more subtle!

flow – thanks for the update and to hear how you are dealing with it. Good luck with coming off those pills, did you ask your GP for guidance with this? Was there absolutely no difference with changing your diet then, seem to remember you made big changes?

jb79 – are any of your comments aimed at me? I’m guilty of ‘GP bashing’, as you call it? Are you a GP?

I’m afraid to say they were cinnamon girl.

Grum – I don’t think people with CFS are dicks, but they are often difficult in that they reject help from the start, having their own firmly and unshakeably held beliefs about what is wrong with them. I’m pretty up to date on CFS research but these sort of patients just don’t want to hear it and are sometimes quite unpleasant about it. Occasionally they can be won round but it is a massive effort that can adversely affect me and my other patients. Those who never get better are normally entrenched in their beliefs and a general hatred of the medical profession (though they keep coming back to the medical profession for some reason).

FWIW I believe CFS is probably a bunch of conditions all lumped together under one umbrella, some of them complex (in that they arise from multiple interacting components rather than having a single cause). This, I think makes a trial and error approach of multiple treatments, based on what limited evidence there is, the most valid course of action – it can be frustrating and time consuming sometimes. I wonder if in certain cases anger and hate is at least a component of the condition, if not its cause.

Flow – on mirtazipine: it is more sedative / causes more fatigue at lower doses (so if you’re on 45 or 30 you might feel worse on 15 for a different reason than you think) but you should titrate it down rather than go cold turkey.

jb79 – if GPs are not given correct guidelines in how to treat an illness then obviously the RCP are not doing their job. I am angry because the original GP I saw decided there was nothing wrong with my thyroid and I just needed AD’s. I disagreed and was told to see another GP! I saw two other GPs at that same surgery and was fobbed off – obviously out of loyalty.

I have moved to another area and have started the whole process again but, of course, there’s some acronym on my records. I am angry that for 2.5 years my health has been crap and even angrier that GPs dismiss me as a moaning menopausal woman.

Now I realise that hypothyroidism is a minefield and a huge number of people have experienced difficulties in getting treated.

It’s great that we have some medics on the Forum and we can all learn. 🙂

Is it this guidance that you’re referring to cinnamon girl?

I personally try to keep an open mind and do my best to avoid guidelines, especially when things don’t fit neatly into a certain box. It can be difficult though, and straying too far from the guidance on thyroid disorders seems to be a pretty good way of getting the GMC’s attention.

From where I’m sitting I see that most GPs are good people trying to do their best with limited resources in the face of massive demand and inflated expectations. There are of course some arseholes who are GPs! I see 35-40 patients on a normal day and some days have up to 150 contacts with patients when you include telephone advice. Patients normally attend with 2-5 problems now. There’s also repeat prescriptions to sign (sometimes thousands), blood results to check, letters to read and all on top of shifting politics and structures. Staying up to date with the latest research in every field is a distant dream for most! I think that the service most patients receive is amazing, given how cheaply general practice (and the wider NHS) is run. It’s very demoralising to feel constantly under attack.

flow – thanks for the update and to hear how you are dealing with it. Good luck with coming off those pills, did you ask your GP for guidance with this? Was there absolutely no difference with changing your diet then, seem to remember you made big changes?

They did at the time, most noticeably cutting out sugar. I know know this was because Mirtazapine causes problems with your blood sugar.

It can also cause muscle and joint pain, and although it was not what caused it in the first place, I am 99% sure it is what is causing it now. Every time I drop my dose I see an improvement. I also think it is possibly causing sleep issues now.

I asked two doctors about coming off Mirtazapine, they both told me I was on the lowest dose, 15mg, so I can stop straight away. Thank god for the internet, thats all I can say! There are countless people who have been put through horrendous withdrawals because their doctors have misinformed them about coming off antidepressants.

I cut down a quarter of a tablet at a time, and currently take a quarter. Next drop is in about a weeks time where I will be taking half a quarter. I have had minimal withdrawal this way, only slight insomnia.

I am hoping and fully expect to be back to “normal” by summer, and have planned a trip to the alps with my brother for a weeks guided riding.

well, apart from the cold I caught off my friends kids I’ve been fine.
The treatment course is based around the maladaptive stress response and the way they explain it makes total sense – basically you are walking around in a constant stressed state – although you may not realise it due to feeling fine most of the time. Think of it like a frog put in boiling water will jump out, but if you put a frog in cold water and boil it up it won’t move – same with this – you gradually build up your levels so it feels normal but actually you are hyperstressed at a subconcious level.
The key areas they say are that
1. You are in a constant stressed state and this has become the norm – hence why you don’t recover after having a restful nights sleep.
2. Thought processes don’t help as they keep you in that stressed state which produces all the chemicals / hormones which cause the physilogical symptoms
3. The way to overcome it is calming the mind down and retraining the subconcious to react differently to bring that constant state of stress down over time to something normal.
Think of it like riding your bike at Max HR all the time rather than an average of 130-140bpm. Over time you’d burn out if your were always at MaxHR, but at 130-140bpm (which most people would ride at) you would be able to last for longer. So you have to adapt a different way to ride / think
Does that make any sense???
The best bit of the time spent with them was meeting other suffereres with different symptoms but all having the same condition. The differences made you realise that it was down to this stress response as you could see everyone’s anxiety about doing the wrong things, eating the wrongs things, over doing it etc. That was the biggest eye opener.

Keep on with the advice in there as thats the way to recover.

The high stress state you refer to is also referred to as a sensetized state. And that is all that is wrong. This state needs to be fed to remain, so take away the fuel (analysing) and it dies down over time.

What a lot of sufferers do if fight these feelings, analyse the symptoms to death.

I suffered for a few years with these symptoms, plus some others. It was only when I deleted my computer ‘anxiety’ bookmarks, closed the anxiety books, stopped going to the doctors, generally stopped looking for something wrong with me, that I started to recover.

A stressful event initially triggered these feelings, instead of aknowledging this initial event, ‘we’ become scared of these feelings and then analyse them which maintains this heightened sensetized state, and it is this state that produces all the phsycological and physical symptoms experienced.

What Xcracer said, I think that is the key to getting better too.

I remember you telling me that ages ago on this thread, after a while I realised you were right.

Getting out of that way of thinking isn’t easy, but once you do it makes a lot of difference.

I went from being worried about doing anything in case it made me worse (and it did make me worse), to riding off road for an hour within a month.

jb79 – yes, that’s it. It has been suggested that those guidelines need revising, in line with the European/USA measuring levels. There is much that is questioned and this is most useful:

http://www.thyroiduk.org.uk

Yes, I do appreciate the work you GP’s carry out and in fact this is the first time I’ve ever had to dispute a diagnosis.

I don’t know what the answer is, particularly with an increasing (and possibly more unhealthy) population. Please don’t feel ‘constantly under attack’ – it’s the system that’s wrong.

On the positive side, I received excellent treatment when I ended up in hospital following a dark side accident. Still waiting on some metal work though. 🙁

Grum – I don’t think people with CFS are dicks, but they are often difficult in that they reject help from the start, having their own firmly and unshakeably held beliefs about what is wrong with them. I’m pretty up to date on CFS research but these sort of patients just don’t want to hear it and are sometimes quite unpleasant about it. Occasionally they can be won round but it is a massive effort that can adversely affect me and my other patients. Those who never get better are normally entrenched in their beliefs and a general hatred of the medical profession (though they keep coming back to the medical profession for some reason).

I can understand that must be frustrating, but not as frustrating as having CFS massively impact on your life and feeling like you get no support. If as you seem to be suggesting the problem is often psychological, then IME the level of support/care available for people with those kind of problems seems very minimal, at least in my area. I appreciate that GPs can only give people what is available. Being made to feel like an ungrateful timewaster (kind of the tone of some of your posts) isn’t really very helpful though.

People do place a great deal of faith in the ability of modern medicine to be able to deal with most health issues – generally speaking that is something to be pleased about surely. Obviously it can be taken too far.

FWIW I believe CFS is probably a bunch of conditions all lumped together under one umbrella, some of them complex (in that they arise from multiple interacting components rather than having a single cause). This, I think makes a trial and error approach of multiple treatments, based on what limited evidence there is, the most valid course of action – it can be frustrating and time consuming sometimes. I wonder if in certain cases anger and hate is at least a component of the condition, if not its cause.

I agree with the first bit. Your statement about anger/hate though – do you have any actual evidence to support that, or is it just a hunch?

From where I’m sitting I see that most GPs are good people trying to do their best with limited resources in the face of massive demand and inflated expectations.

I agree, although GPs are fairly well compensated for the stresses of their job.

It’s very demoralising to feel constantly under attack.

Yup, and very demoralising to feel that people are dismissive about something which is having such a major negative impact on your life. People with CFS can feel somewhat under attack too – see recent tabloid stories describing it as a ‘made-up’ illness.

We are all learning from this thread.

It’s not the Docs’ fault that after my ME diagnosis I saw a succession of locums and temps, met with a variety of responses*, and became aware of the term ‘dustbin diagnosis’. But it fitted. And all the research money at the time went in the direction of it’s all in your head.

So people found help and support on the internet, and started questioning medical authodoxy. Is that any surprise?

*The oddest of which was that Beconase spray had the answer. I presumed that was medicspeak for bog off and stop bothering us.

I agree with the first bit. Your statement about anger/hate though – do you have any actual evidence to support that, or is it just a hunch?

I too can’t get my head around the anger/hate bit.
My niece was diagnosed at the age of 9 with severe cfs, so bad that she was in a wheelchair for many years and has lost most of her schooling/education from that age onward. I really can’t think that she (and other children) could be angry or have hate as sufferers of cfs. However I do agree with all the stress related problems, these would and could be the cause for a child.

On a happier note – after almost 5 years as a sufferer I finally feel I’ve got my life back. Unfortunately one of the major stresses for me can’t go away as it’s caused by a very close family member, my only hope is to stay away from her as much as possible, almost being selfish and living my own life.

So there is hope out there, because believe me in my darkest hours, at my illest, I felt It would be better for everyone (including myself) to be dead. This is no longer the case.

Thanks to all the posts above they’ve all been very informative and helped in my recovery.

No evidence, just a hunch as it is so often present in those who don’t get better and is there from the start. The other commonly present feature is a patient very well rewarded by their sick role (often by people with the very best of intentions – from healthcare professionals to family members).

I’m not saying these features are always present (far from it) but they do seem to feature heavily in those who don’t get better. Whatever, I can’t see that these behaviours can possibly help and I often address them directly with patients – doing so normally seems to help.

Nice one Bunnyhop!! Pleased for you

I’d comment on the other posts but won’t as I’ve been diagnosed as having mental health issues apparently and I’m sure nothing I say now will have any use or bearing in anything.

Thanks so much Bushwacked – good luck with your life and get better very, very soon.

Just wondering how folk are doing? Bushwacked? Flow? In fact, all other poorly contributors.

Been an odd couple of weeks for me as I ran out of Thyroxine, thanks to brain fog, so anyway, I decided ‘sod it’ am not going to take any more and instead I upped the supplements.

Had been slowly weaning myself off the ADs and am now finished with those. Wonder if I can get the acronym removed from my medical records?

So … interestingly my body temperature is now as it should be and I no longer bundle myself into loads of layers. In fact, I actually get too hot!

Suspect I still have a long way to go and will keep monitoring my body by taking temperature and pulse on a regular basis. In the meantime, it will be interesting to see whether my GP refuses to have me as a patient any more. 🙂

Something happened to me from late 2009 to mid 2010 where my body was aching all over and getting tendonitis in Achilles, rotator cuff, bicep, thumbs etc, and just picking up thing seemed to strain muscles and make them ache for ages. For a couple of months just dressing hurt and could not open doors properly. Was awful. Now I feel about 80% ok but my days of being an athlete seem over. It was a real shock and no idea what ‘it’ was. I’d give anything to go back to how my body felt before that because apart from a dodgy back from 2008 on I was almost indestructible. Now I gotta think twice about even pushing hard on a wrench.

when I was about 15/16 I felt awful for a year, always sweating, exhausted, dry mouth. Doctor at the time told me to go away and that the most common complaint was from people feeling tired. I then was depressed at stages from about 18 to 22 but managed to stay out of any medical establishments.

I tend to stay away from Doctors because I don’t like placing myself in their hands unless I know myself what he diagnosis and prognosis is most likely. Otherwise I feel somewhat on the wrong end of a power differential.

I did go to the Doc in 2011 about the aches and tendonitis and he just said do some swimming. It was kind of humiliating because for me it was a 100% change in my body and life changing, but he brushed it off as nothing really. I have always been bad at asserting myself with Doctors etc. If it flares up again I will press for blood work because it could be some reactive/auto-immune condition.

Can I edit that old post to:

Something happened to me from late 2009 to mid 2010 where my body was aching all over and getting tendonitis in Achilles, rotator cuff, bicep, thumbs, neck etc, and just picking up thing seemed to strain muscles and make them ache for ages. For a couple of months just dressing hurt and could not open doors properly. Was awful. Now I feel about 80% ok but my days of being an athlete seem over. It was a real shock and no idea what ‘it’ was. I’d give anything to go back to how my body felt before that because apart from a dodgy back from 2008 on I was almost indestructible. Now I gotta think twice about even pushing hard on a wrench, and I can’t even play guitar for very long because of my thumb.

When I was about 15/16 I felt awful for a year, always sweating, exhausted, dry mouth. Doctor at the time told me to go away and that the most common complaint was from people feeling tired. I then was depressed at stages from about 18 to 22 but managed to stay out of any medical establishments, although for a period it might have been a better place for me.

I tend to stay away from Doctors because I don’t like placing myself in their hands unless I know myself what the diagnosis and prognosis is most likely. Otherwise I feel somewhat on the wrong end of a power differential in a kind of Foucaultian sense.

I did go to the Doc in 2011 about the aches and tendonitis and he just said do some swimming. It was kind of humiliating because for me it was a 100% change in my body and a life changing ‘condition’ of enormous negativity, but he brushed it off as nothing really. I have always been bad at asserting myself with Doctors etc. If it flares up again I will press for blood work because it could be some reactive/auto-immune condition. Most likely though it would be diagnosed by exclusion as a ‘syndrome’ of some sort, and whilst I would have the pointless consolation of having my problem ‘named’ I would be no better off in actuality.

rydster – that doesn’t sound very good. 🙁 I can appreciate what you are saying re having it diagnosed but it seems there are ailments that can’t be pigeon-holed.

As I’ve found out, blood tests aren’t the be all and end all particularly, in my case anyway, the acceptable levels are higher than in the USA and parts of Europe. Who decides the ‘reference range’? Who decides the ‘base line’? Also, it’s worthwhile requesting bloods to be investigated over a complete range to enable a clearer picture.

Rydster – you heard of Fibromyalgia? It sounds like you may be suffering from this (although I am not medically trained or have actually spoken to you.)

If it is Fibromyalgia then its similar to ME/CFS and you can recover from it.

CG – I’m all good, slowly improving and feeling better and better every day.

Edit – CG – a baseline will be different from one person to another. I may have a totally different normal state to my neighbour but we’d still be seen as OK under the reference.

Maybe, but I’m not sure what the point is of being diagnosed with what is just a syndrome and thus having half the medical establishment consider you mad.

So unless it gets worse I am just going to leave it.

My own thoughts are that after I hurt my back in early 2007 I was taking tons of ibuprofen every day, then about 6 months later I got really painful bursitis in my shoulder, kept on taking ibuprofen, then 6 months later got tendonitis in rotator cuff, then over the next 6 months it was just pain everywhere and through this period what seems like minor injuries would just not heal rather inflame up and stay like that. I quit the ibuprofen thinking (because of long term use) maybe my body was fighting against it by making more inflammatory chemicals??

Since then I am not as acute although I am taking Naproxen ATM because of epydidymitis which I think is entirety separate issue. But I am very wary of long term use of this NSAID.

Perhaps a random question but do you worry you’ll never get better and that every ache and pain may be it getting worse or still being there?

By the way, you’re not mad, just out of the realms of general practice.

Doesn’t sound much like fibromyalgia – sounds autoimmune to me (as rydster himself says). The epididymitis could be related, being caused by the same underlying process. In this case (the correct) blood tests are likely to be very helpful though may be falsely negative, especially if not currently ‘flared up’.

You folks really seem to be meeting some crummy doctors… depressing.

My own thoughts are that after I hurt my back in early 2007 I was taking tons of ibuprofen every day, then about 6 months later I got really painful bursitis in my shoulder, kept on taking ibuprofen, then 6 months later got tendonitis in rotator cuff, then over the next 6 months it was just pain everywhere and through this period what seems like minor injuries would just not heal rather inflame up and stay like that. I quit the ibuprofen thinking (because of long term use) maybe my body was fighting against it by making more inflammatory chemicals??

Doesn’t sound like the ibuprofen’s fault though NSAIDs can impair tendon healing. Tendonitis is actually a misnomer since it isn’t actually an inflammatory process.

You folks really seem to be meeting some crummy doctors… depressing.

I wouldn’t say that is strictly true. In my case, my argument has been that the result of a blood test is treated as gospel and how I actually feel doesn’t come into it! Notwithstanding guidelines from the Royal College of Physicians needing looking at, compared to other countries.

Out of curiosity jb79, seeing as these days GPs have far too many patients, how do GPs actually find time to read up on new medical developments, research etc.?