You don't need to be an 'investor' to invest in Singletrack: 6 days left: 95% of target - Find out more
No other group of patients researches their illness and spends as much time discussing it to quite the same extent as people with CFS/ME/PVF, Lyme disease (where there's no tick bite seen), total body candida (typically pronouncing it can-deee-da), etc
You might want to include thyroid conditions in there too seeing as, ime, GPs are very keen to write out a prescription for ad's.
Oh and a patient satisfaction survey from the practice too might help to get rid of the GPs with the lazyitis virus.
You might want to include thyroid conditions in there too seeing as, ime, GPs are very keen to write out a prescription for ad's.
I take it you're talking about people with hypothyroidism treated as depression without blood tests being done first? That's a simple cock up, a missed diagnosis, not a complex condition. It happens, and as I said other stuff gets missed too and patients pick it up after some internet research, but seriously nobody does research quite like people with CFS etc. Being very analytical seems to go with the condition and as I also said, I have wondered whether it might fuel it. One way to help yourself is to use that analytical mind for good - formalise the trial and error. CFS and its siblings are conditions with no silver bullet (at least not yet and I suspect not ever).
I agree TFTs should always be done pre- or soon after antidepressants are started by the way. I'd also say most antidepressants are a waste of time for most people but quite a few patients come in to get them and they give doctors a quick and easy route out of a 'heavy' consultation.
Oh and a patient satisfaction survey from the practice too might help to get rid of the GPs with the lazyitis virus.
They tend to have their followers though and most rate their GPs very highly whether they're good or bad. Of course there are lazy / shite GPs out there (we're humans after all) but honestly, the constant doctor bashing at the moment is seriously unhelpful and demotivating to those of us who do give a shit.
LOL, same old answer that everybody gives that's never properly had to deal with somebody close to them with CFS/PVF/ME in their life.
Lol, but just mayby I do know someone very close who suffered, and once they chose to stop worrying/analysing/discussing their condition they improved and made a full recovery. Anyways Im out.
I take it you're talking about people with hypothyroidism treated as depression without blood tests being done first?
The Royal College of Physicians directs GPs to carry out one blood test which is supposed to determine a thyroid condition. In practice it sounds simple - if the level is over x then you have a thyroid condition. If it's under x then you don't ... so I am not going to listen to your symptoms.
The very people that are having to fight to be listened to are the very people that don't have the strength to do that.
Please ... I'm not doctor bashing having just spent 3 days in hospital last week after coming off my bike ... I'm fed up with not being listened to!
Mboy - the only way the AD's have helped is they get me to sleep, I'm not depressed, although I think they also might have calmed me down a bit as I was starting to worry what was up with me as I have no diagnosis.
I just changed doctors and this one seems really good and actually wants to help me get better. He phones to ask me to go in and see him, he never forgets anything like my symptoms or our conversations. The last doctor couldn't even remember my name, let alone symptoms, and it was obvious she didn't give a shite.
Are you on the mend now then? How long have you been suffering with the bastard thing this time? Once is bad enough, let alone twice! I feel for you dude.
One way to help yourself is to use that analytical mind for good - formalise the trial and error. CFS and its siblings are conditions with no silver bullet (at least not yet and I suspect not ever).
Very good point.
I've got a very naturally analytical mind, and when somebody tells you you're ill but they don't know what it is or what's causing it, you do go about searching for answers. I did put my natural CI training into effect though, and started doing some root cause analysis on my problems and the effects, and started to eliminate the things that seemed to make me worse, and focus on the things that make me better. If you're going to sit reading wikipedia and focus on the negatives, it's obviously going to be a massive downwards spiral, but 2nd time round I decided to get better the only way I was going to successfully do it was to shut out any negatives in my life, and focus on all the positives and spend time making them happen.
I just changed doctors and this one seems really good and actually wants to help me get better. He phones me to ask me to go in and see him, he never forgets anything about me, like my symptoms or our conversations. The last doctor couldn't even remember my name, let alone symptoms, and it was obvious she didn't give a shite.
Just having a doctor that remembers your name and all your symptoms instills a massive amount of confidence, and stupid as it sounds, this could even be the catalyst to help you get better! It helped me a lot, and that he was prepared to try as many different methods as possible to help me get better too.
Are you on the mend now then? How long have you been suffering with the bastard thing this time? Once is bad enough, let alone twice! I feel for you dude.
Struck down beginning of April, so just over 6 months ago. I'd say I'm about 80-90% better now. First time I had it, took me 6 months before I was happy really even leaving the house, so recovery has been quicker this time. Part of my speed of recovery I'm attributing to no matter what, I made riding my bike the most important thing to me. So I'd sacrifice pretty much anything to make sure I got a ride in each week.
The single biggest step change I found though, and this is quite personal to me, has been having something to focus on, a positive influence in my life. You NEED to be able to be positive about something, and having discussed this at length with bushwacked, I can see why different methods work for different people. His theory about Gupta makes good sense, it might not be for everyone, but if it helps you to be positive then all good. Same as the lightning process, I totally poo pooed it at first (and to be honest I know it wouldn't work for me still as I'm too cynical), but if you're the kind of person that can find positivity in that way it could be money well spent. I'm not, so I knew I had to find some positivity for myself... I've gone back to uni, to do a Music Degree, something I'm totally passionate about, so now I live for studying and riding my bike and I'm bloody loving it! Only small problem is the fact I'm skint, and that's probably going to be the way it is for the next several years too, but money ain't everything...
Oh, and one thing you MUST remember that I didn't realise after the first time I recovered... I thought I had dealt with CFS, and that meant it was out of my life... WRONG! As someone who has suffered with it, you are very susceptible to a relapse providing the conditions are right for it to return. So now I'm going out of my way to make sure those conditions don't happen, removing negative influences from my life, focussing on goals that will make me happy (without being too unrealistic as they have to be semi-attainable), and generally not beating myself up for being who I am right now. I found that just giving myself a break for not being as successful as I wanted to be by the age I am now (31), has helped loads! It's all about taking the positives out of every situation... Happy Clappy sh*t if you like (like the lightning process) works for some, but for me I just go about it my own way...
Like I said mate, email is in my profile...
The Royal College of Physicians directs GPs to carry out one blood test which is supposed to determine a thyroid condition. In practice it sounds simple - if the level is over x then you have a thyroid condition. If it's under x then you don't ... so I am not going to listen to your symptoms.
Fair enough. Humans are incredibly complex and poorly understood, the problem comes when we pretend otherwise. Not listening is inexcusable.
EDIT: P.S. Why does an illness always have to have a cause, like a dodgy thyroid or a virus or whatever? Could illnesses not be complex in origin? The dogged pursuit of a cause is fraught with difficulty and danger...
Just having a doctor that remembers your name and all your symptoms instills a massive amount of confidence, and stupid as it sounds, this could even be the catalyst to help you get better! It helped me a lot, and that he was prepared to try as many different methods as possible to help me get better too.
You are definitely right there mate, as soon as I changed it was a HUGE relief knowing my health was in the hands of someone that actually gave a shite.
Because riding my bike, or any exercise makes me ache for weeks, I have really got into photography and have recently started a btech at college. At the moment because my sleep is so awful I have been missing a few days, but I have asked if I can do the work at home when I'm not up to going in, this has taken my mind off it no end.
Its good thet you have made a speedy recovery this time, I got ill a month after you did and have only just started getting better, but I WILL GET BETTER! I am going to keep telling myself that, there is no way this is staying with me forever like it does with some people, nooooo chance.
I have just been reading Dr Myhills site, some very interesting reading there, I will be following a lot of that info from now on.
Like I said mate, email is in my profile...
Thanks mate, my memory is so shite I forgot you said about it the first time.
Wishing good health to bushwacked, mboy and flow. 🙂
EDIT: P.S. Why does an illness always have to have a cause, like a dodgy thyroid or a virus or whatever? Could illnesses not be complex in origin? The dogged pursuit of a cause is fraught with difficulty and danger...
I believe they are complex. For example, during the last 3 years I have experienced most of the top 10 most stressful life events. This year I have seen the harrowing death of my father, my mother in hospital for 2 months, moving house to a new area, falling off my bike and possibly surgery required.
Actually what is keeping me going is whilst I was in hospital, there was a young guy who had been beaten up. He was in a wheelchair and had brain damage. He was in his 20's and his life was effectively over. Puts everything into perspective.
Thanks. You're right too, when you think you have it bad, it can pretty much always be worse!
Thanks, Doc.
Do people know that those with CFS / ME are now barred from donating blood? Not that there's anything wrong with their blood, no, far from it... it's to protect the would-be donors from damaging themselves.
My email is barnt at hotmail dot com
I firmly believe that the anxiety around the condition causes the symptoms, both physical and mental. I looked up the effects of over production of the stress hormones (adrenaline / cortisol) on the body and it read like a list of my symptoms. At that point I worked to relax and distract myself from over analysing how I was or how I felt or what was happening to my body, plus taking sleepIng aids, and it has greatly helped.
Had an awesome ride yesterday!
Mboy that is exactly how I managed to get over the worse bit of being ill.The single biggest step change I found though, and this is quite personal to me, has been having something to focus on, a positive influence in my life.
Bushwacked - I also agree with you about anxiety. It can become a vicious circle. Its not always easy though to walk away from the very thing that can cause these worries in the first place.
Totally agree, anxiety and worry is a tough one to overcome.
Thanks Bushwacked, you are right about the anxiety. I didn't think I was an anxious person before this happened.
May I ask what sleeping aids you were/are taking? I have just ordered some melatonin, I have some valerian and am hoping to change my AD's to amitriptyline on Tuesday. I find not having sleep makes me 10 times worse, both mentally and physically.
Sleep - I found that just chilling out at least an hour before bedtime. This means no computer. Maybe reading a book and definitely no alcohol.
No food either for a few hours before bed, sometimes a warm bath.
Just simple things really.
Oh what fun we all have 😉
Thanks bunnyhop, I have tried all the normal rituals and none of them work for me 🙁 When I do finally get to sleep its like Im in that 1st daydream faze before you drop off properly and never get deep asleep. I always feel like Ive not slept. It sucks hard.
The AD's were working for sleep, but Ive got used to them now hence me changing.
I find wearing my favorite smoking jacket and enjoying some mozart really helps me 😉
Flow - I got your email, will reply later once I'm back from work - bit mental at the moment. Half year review today and not prepared 😯
If you're reading books, make sure its a good fiction book - I've found non-fiction doesn't help, even some auto-biographies. You need a good story to get lost in. (Thirteen Hours by Deon Meyer is awesome by the way)
Nice one mate
its like Im in that 1st daydream faze before you drop off properly and never get deep asleep. I always feel like Ive not slept. It sucks hard.
I know that so well!!
I know that so well!!
Its a strange one. You body is shafted and [b]really[/b] needs some proper sleep, but it wont let you. To me its one of the worst symptoms, just because it can make or break a day, or even week if you have a few bad nights.
Folks
Thanks so much for all the above, what a good thread.
I'm suffering with PVF, and have been since early April. I was training for an Ironman, so was keeping an eye on my fitness levels. I started to get slower week on week, and I (mistakenly) kept up the volume of training if not the intensity, in addition to a 12 mile round trip bike commute each day.
The virus then got bad. Horrendous night sweats, generally feeling ropey and worn out, and then latterly chest pains. Off to the docs and a virus was diagnosed - blood tests showed that it had impacted on liver function but then returned to normal. Chest pains/pericarditis stopped as soon as I stopped exercising, and ECGs were fine. I was feeling breathless - x-rays of my chest came up clear. Absolute rest prescribed. And that was April time. I'm basically left with a permanent breathlessness. In the spring it would wip me out to run upstairs or to chase my wee lad on his bike. It's better now - i can go on a really slow five mile bike ride with him, or gently jog 200m, but proper exercise seems a long way off as the recovery is so gradual. I also feel a bit fuzzy mentally, but no depression or real lethergy - I'm desperate to get out for a run or a bike ride!
Anyway - lots for me to consider here, including lyme's disease, and all the other alternative therapies mentioned...lots of research for the next few nights!
My doc has been helpful and interested, but hasn't said anything other than absolute rest and more of the same. I feel positive that some are moving in the right direction, and horrified that some folk think they have been suffering years.
Anyway, I'll add back to the thread when I've read through all the links and advice.
Cheers
FTM
Well just a quick update. I went to the doctors today and he has decided that as all the tests are clear its "probably nothing".
I'm not sure what to do next.
the doctor has no real access to a good lyme test though and probably has very little experience with it.
go see someone who does and get a western blot test done. this combined with a clinical diagnosis by someone who knows the crack is your best bet.
Nonk, I'm thinking its my only option, even if its just to rule it out.
Even my doctor has said the NHS tests are unreliable. I asked him if he could prescribe me some doxycycline for a month or 2 to see if it made any difference, but he said that my symptoms suggest that if I did have Lyme I would need UV treatment as I would be in the later stages. He did offer for me to be tested by lumber puncture, but I refused. I have read its just as unreliable. Basically I need to find someone that knows what the ___ they are on about, and get tested like you said.
I asked him about fibro and CFS and he agreed they are both unlikely because I dont meet the diagnostic criteria for either, ie no debilitating fatigue for more than 50% of the time (I think thats right) for CFS, and no pain in 11 of the 18 points for fibro.
the doxy has returned very similar results to UV it would seem most folks do ok on it.
anyways best of luck fella.
Thanks Nonk
@ flow, my story. I went to my GP, said 'could I have caught Lyme? She looked up Lyme in a big book and gave me 28 days' doxycycline, While I took it, it made my symptoms worse: I noted the details, basically cycles, at 10-12 days intervals, of crippling headaches. I went back to ask for more, mentioning the headaches and timing. She said 'I won't give you any more of that, then'.
Later I learned about the Herxheimer effect, how antibiotics cause worsening of symptoms. The killed bacteria release their toxins which affect you. Though my current GP seemed to say this only applies to syphilis, which I think is also a spiral bacteria.
Subsequently I got fixed (well vastly improved) by a doc outside the NHS. Though the GMC are now making trouble for such.
I suggest you get yourself along to EuroLyme
Flow:
I just changed doctors and this one seems really good and actually wants to help me get better. He phones to ask me to go in and see him, he never forgets anything like my symptoms or our conversations. The last doctor couldn't even remember my name, let alone symptoms, and it was obvious she didn't give a shite.
and
I went to the doctors today and he has decided that as all the tests are clear its "probably nothing".
Same doctor?
Thanks Slow old git, I either have Lyme or CFS, even the doctor thinks more likely Lyme but he won't give me anything until its proven by a test (lumber puncture which is supposed to be useless) I think my only option is to go private, even if its just to rule it out like I said.
Yes jb79, same doctor.
A slight update, more for the benefit of anyone who happens to find this thread via the search more than anything.
I still haven't been diagnosed with anything. I had some more blood tests yesterday, vitamin B-12, folic acid, celiac disease, auto immune serology and another which I will find out the name of as I can't remember.
I have however done a few things that I feel have made a difference to whatever I have.
About a week ago now, I cut out all sugars, and only ate meat and vegetables. Nothing at all processed (except 97% pork sausages from Asda!) Today I decided to go one step further and cut out gluten too. If you look at gluten sensitivity symptoms you will find a lot of PVF/CFS/ME symptoms in there. The sensitivity can be brought on by a stressful event, like too much exercise, an illness of some sort, or emotional stress. Its been pretty easy and I found after 4-5 days I got my appetite back.
Yesterday night I had the first proper deep sleep for a long time, although last night I didn't :o( I'm hoping maybe tonight I will.
I have also been taking vitamin supplements everyday to help my body with whatever it is.
I am still thinking about getting a private Lyme test.
Hopefully will have an update soon feeling even better!
Another update.
The blood tests came back fine (surprise, surprise)
After a few days of cutting out gluten, I cut out lactose too, then tried to buy mostly organic fruit and vegetables (you will be amazed how much better they taste, and they have up to 40% more nutrients apparently) and things like corn fed free range chicken, free range eggs, decent quality meat etc.
For the past week slept like a baby! My aching muscles and joints have drastically reduced. Some days I actually feel better than I did before this started, then I have a slight set back, not to badly though.
I have an appointment with the doctor tomorrow, the last time we spoke he was basically telling me I either have anxiety/depression or CFS, I couldn't give a shit what he calls it to be honest, I'm doing fine on my own, they haven't helped one bit.
So there you have it, I posted this thread 3 weeks ago, and with lots of reading/research and help from others (not doctors!) I have managed to seriously improve my symptoms and can actually see a light at the end of the tunnel, whereas before I was in a seriously dark place!
Hopefully next week I will be updating again, and will be feeling even better! Fingers crossed!
"whereas before I was in a seriously dark place!"
Ah definately not depression then was it...
Good on you for dragging yourself out from none depression. In things like this being positive about getting better is the thing that makes a difference.
So there you have it, I posted this thread 3 weeks ago, and with lots of reading/research and help from others (not doctors!) I have managed to seriously improve my symptoms and can actually see a light at the end of the tunnel, whereas before I was in a seriously dark place!
To be fair to the doctors, they did rule out a lot of stuff for you - even if they didn't find / haven't found the real cause. Still, nice to hear a happier story today, it's been pretty grim so far!
FunkyDunc
I think I was slightly depressed, but that was a symptom of whatever I have, not the cause.
You try not sleeping for 6 months, have every muscle and joint in your body ache constantly (to name but a few) whilst trying to bring up a 2 and a 5 year old (yep the Mrs works and I'm at home/college), and see how you feel by the end of it.
Not to mention not being physically able to do anything you want to do, or don't want to do for that matter.
If you want a lesson on the differences between CFS and depression, I could quite easily write you an essay?
You are right Mogrim, I guess they did put my mind at rest slightly by letting me know I wasn't dying, even though it felt like it at the time.
flow - good that you are getting some respite from your illness - long may it continue.
As a matter of interest, in yesterday's Sunday Times there was an article entitled 'Eat Yourself Well'. Various info and menus for assorted conditions including CFS. It's tied into a TV programme called 'The Food Hospital' which starts on 1st November, Channel 4, at 8.00 pm.
If you want a lesson on the differences between CFS and depression, I could quite easily write you an essay?
Haha, nice one! Pretty much my exact thoughts when I went to see a CFS specialist about 4 months ago and she basically told me I might have CFS, but she wasn't going to help me because I was depressed too. Now, most of my depression was due to being seriously ill again and not being able to do anything about it, but having researched this deeper it seems almost everyone that suffers from CFS/PVF/ME suffers from depression too, often a contributory cause of the illness but almost always a symptom. There are some lazy lazy people out there who sadly seem to work for the NHS! There are still some good doctors though of course.
Anyway, well done for finding your own way to get better. Seemingly this really is the way to go, it's how I managed and how I know others managed it. You've got to believe in yourself and be positive and whatever you need to do that, then do it. It's also why there are various "one cure fits all" therapies (such as the lightning process) vying for your money...
I was diagnosed with severe M.E. in 2006 (after being diagnosed with pheochromocytoma - another story). I was seen at the infectious diseases unit at Sheffield Hallamshire, where the cause was deemed to be reactivated glandular fever. Basically glandular fever keeps returning, and taking a long time to recover from. I am much better today though: stepped exercise, a changed diet, reducing anxiety and stress and managing the symptoms better has meant increased fitness and a slow, but steady recovery.
To anybody who hasn't had this illness, I cannot describe the level of fatigue and incapacitation when it strikes.
This is great news that so many of you have 'turned a corner'.
I too believe that all doctors think that it's depression that CFS patients suffer from, however it's that very fatigue that can cause the black lows.
Can I add my best wishes to all who suffer and to keep up with the good diets, small amounts of exercise and keeping faith in yourself that you will get better.
Seems to me that at least one of the doctors you have seen has done what's best for you (but perhaps not what you wanted) in listening, doing all reasonable tests and setting you free from medicalising this.
First do no harm...
Thanks Cinnamon Girl; I will check that out.
Exactly Mboy, anyone who thinks its "just depression" is seriously deluded, and I have no time for.
Depression on its own isn't to be sniffed at, it drives people to suicide.
People who haven't had CFS don't know what it feels like, and I suppose you can't expect them too.
When you have the flu, you know you will feel like crap for a week or two, but after that you will be back to normal. Its no real worry.
With CFS there is no end (at least you think at the time), the doctors you usually turn to for answers have none, your life has changed over night and you feel seriously helpless. That is enough to make anyone depressed!
There are some positives that have come out of it for me though. I have learnt a lot about myself, the human body, illness, nutrition and photography 😉
Edit: I'm still not out of the woods yet though, but touch wood I will be.
Like Bunnyhop said, don't give up hope.
It started off so well...
I just changed doctors and this one seems really good and actually wants to help me get better. He phones to ask me to go in and see him, he never forgets anything like my symptoms or our conversations.
Someone said:
Just having a doctor that remembers your name and all your symptoms instills a massive amount of confidence, and stupid as it sounds, this could even be the catalyst to help you get better! It helped me a lot, and that he was prepared to try as many different methods as possible to help me get better too.
To which you replied:
You are definitely right there mate, as soon as I changed it was a HUGE relief knowing my health was in the hands of someone that actually gave a shite.
Then...
The blood tests came back fine (surprise, surprise)
And finally...
I have an appointment with the doctor tomorrow, the last time we spoke he was basically telling me I either have anxiety/depression or CFS, I couldn't give a shit what he calls it to be honest, I'm doing fine on my own, they haven't helped one bit.
What changed and what exactly were you expecting?!
The illness causes depression, rarely the other way round.
The IDU was a big breakthrough as they run a mass of tests to see if there is pathological reason for the symptoms, as has been mentioned, the symptoms are not specific, and some of these illnesses can lead on to M.E. as it did with me.
I have not read all the thread but I will pass commnet on this.
I too believe that all doctors think that it's depression that CFS patients suffer from
I know that is not true however I am certain there is a strong psychological component to it and that it is not one illness but a series of things.
I have had CFS all my adult life but it does not stop me from doing things. I do have to watch for getting overtired and going into a fatigued state which can take weeks to recover from. I believe mine is lyme based from the 70s when I had a tick in me for days - a dead tick at that after much messing about trying to get it out.
Clearly I only have it to a lessor degree than some but I am convinced a part of this is down to my attitude. I refuse to let it stop me doing things
sometimes I drive myself on with stubbornness and willpower but I can only do this so long before going into the deeply fatigued state
I have many the classic symptoms such as night sweats, inflamed lymph nodes, muscle aches and if I do too much I do become excessively fatigued.
Its not something that can be tested for with the current state of medical science - I have had all the tests over the years. Nor is there any treatment beyond CBT, graduated exercise and rest as far as I am aware.
So dealing with the psychological component is the best that can be offered by a GP. this is not the same as saying "its all in your mind"
jb79 - I have written what I've felt at the time. If you are here to pick holes in what I have said then don't comment, I can't be arsed with negative people - no offence
As a GP who works hard to support and help and guide people with CFS/ME/Lyme's etc (and who has tried to provide some help to you on this thread) as best I can given the available evidence I take some offence at how critical you've suddenly become when you didn't get the answer you seemed to want from your doctor. I'm genuinely interested why this happens so often. We don't know everything but to slag us doctors off for no apparent reason seems a bit shitty TBH.
This sort of stuff also feeds the negative attitudes many doctors have re CFS/ME/Lyme's patients and doesn't do anything to help your fellow sufferers.
In all medical encounters there comes a point where the potential to do good is outstripped by the potential to do harm (with medical tests and treatments) and the best doctors recognise this whilst not failing to communicate it to their patients.
T.J. - I wish we'd had chance to discuss this when we met up a while ago. (its one of the reasons we have a tandem :-))
In my experience GPs want to palm you off with anti-depressants because in their eyes the patient does come across as depressed.
When I was first diagnosed (after many tests) I broke down in the surgery. 2 reasons, first was that I knew it wasn't something terminal and secondly I knew I was in for the long haul.
You have the perfect personality for coping with this, I agree that a good attitude and way at looking at lifestyle helps.
I accept that doctors are human and can't really understand this type of illness, how can they when I don't understand it myself.
What will probably and hopefully happen now is you'll learn how to manage this yourself and drag your way out of it and be equipped to identify early and see off any future relapses. The alternative would be ongoing contact with risky and unpleasant medical procedures as well as the 'being ill' (the sick role) that repeatedly going to the doctors' promotes, at least psychologically. Your doctor may well have saved you from that, he sounded from your initial posts like one of the good guys...
p.s. what TJ says is on the money.
Keep in mind too that seeing patients with CFS and the mood disturbances it brings is bloody hard work - you guys don't tend to make easy patients. I say this as a patient (EBV infection, PVF 5 years) so don't think I'm unsympathetic.
Just seen this. I had similar symptoms a few years ago, felt really tired but I also had bodily pains including chest pains and head pains. I had a lot of tests done but they all came back ok, such as a chest xray, ecg, bloods and so on. However because of the symptoms I was experiencing I thought there must be something major wrong with me. It was a scary time to say the least.
However to me it was this belief that something major is wrong with me that kept me analysing my situation, whereas the underlying cause was anxiety. To be fair to my doctor she said prety immediately it is anxiety, especially after the first hospital tests were done, but I didn't believe her if I'm honest. Unknown to me but all the analysing I did was just fuelling the anxiety and it just keeps on coming.
The way I got out of it was to stop anything to do with trying to resolve the situation, basically stop analysing how I was feeling. It will take time to go, but it will.
Bunnyhop - feel free to contact me via email if you want.
Stubborn? 🙂You have the perfect personality for coping with this
I am not diagnosed by anyone but myself - partly 'cos I know it won't make a fig of difference and partly because my symptoms are not severe
Flow - I understand the frustration that the doctor cannot offer you cure - or even a reliable label - after all CFS simply means "you are tired a lot and we don't know why"
Thanks T.J.
Some crossed posts - its not all in the mind but the mind plays a large part - as does the attitude you adopt. I will not play the role of the patient, the sick person. I have met people who did and they were forever off work, at the GPs and so on despite what appeared to be symptoms no more server than mine. Of course as the main symptom is how you feel it will always be subjective and very hard to assess.
Because the mind plays a large role antidepressants and CBT have an affect- more so in some folk than others.
Sorry JB, I actually forgot you posted previously, I thought you were just some random person picking holes. I appreciate you trying to help.
I was really on about my first doctor. I was seeing her for 4-5 months and like I said before she was extremely unhelpful.
I'm not bothered what my present doctor calls what I have simply because I have done so well on my own. A label isn't going to help me out.
Appreciate the apology, thanks.
Modern medicine does a lot of good but it can do awful harm too. Knowing where the crossover is is really the art of medicine IMO and it's difficult not to overshoot.
You're doing exactly what you need to by the sounds of it - change something (adapt), monitor, feedback, repeat. If you've not already have a look at cure together and patients like me for ideas of other stuff you can try. One further bit of advice if I may - only see your GP now if you have very specific things you want to achieve, e.g. a particular prescription, etc.
How did you manage to get over it if you don't mind me asking?
I agree it is partly psychological, I have been doing a lot of nothing, relaxing, and staying out of the way of anything stressful which seems to have also helped.
Flow - perhaps adopting the "bullheart" attitude?
I hesitate to say too much 'cos it gets awfully close to MTFU but in some ways I think you need to deny its existence and refuse to accept the limitations
Jeremy - its that attitude that got me into this situation in the first place.
Too much stress; mental and physical (exercise), illness, and not having any of it is why I am where I am.
Flow - not quite what I meant. You need to avoid the triggers especially stress - but at the same time yo need to deny the CFS the ability to impact on your life. Its a mental not physical step. its not about doing all the things you want to do but its about using the power of your mind to be positive and to minimise the symptoms
Thats what works for me. But as I say its IMO not one illness but a collection of things, different things will work for differnt folk and my symptoms are mild
Ahh sorry, I misunderstood.
I understand now.
How did you manage to get over it if you don't mind me asking?
Not sure if you're asking me?
In short, really f***ing slowly!
It took me a while to realise that I had some positive (in a negative sense!) feedback loops going on (i.e. vicious circles)- in my case these were:
Lack of exercise -> fatigue / restlessness and anxiety -> exercise -> fever (almost every time I exercised) -> insomnia + fatigue for a few days -> off work or tired / disinterested at work -> grief from work (if you want an employer unsympathetic to ill health try the NHS!) -> stress - > anxiety + depression -> poor diet -> worse fatigue -> low motivation -> and back round again to some point in this unhappy circle...
[Too complicated to diagram in a post but hopefully you get the idea]
Once I realised this I started chipping away at the various bits of the loop as best I could (using conventional stuff that helps those bits, e.g. paracetamol and ibuprofen regularly for 24 hrs post exercise to prevent fever (which eased the fatigue too), very slow and frustratingly short exercise sessions, mindfulness / CBT, slowly building up, dealing firmly with work, eating healthier stuff, setting goals (to improve motivation) and so on.
What I found is that none of this made a huge difference initially but tracking objectively things like mood and fatigue levels helped me see progress when in the moment I didn't really feel any (I still felt shit just not quite as shit as last week!). What happened eventually was that (presumably because one thing was feeding another) I reached a critical threshold were suddenly things got better.
Your feedback loops will be different but I suspect they'll be there.
Thanks JB, I was asking you.
I understand exactly what you are on about with the loops, luckily I realised this was happening pretty early on and did nothing/as little as possible to stop it.
I think I am on the right track, hopefully, although I am very apprehensive to start exercising again, because thats what made me really bad! Im not sure how I am going to tackle this. Probably slowly, like you said.
I did an hour on the turbo trainer about a month ago at HR level 2, BIG MISTAKE! My legs where like lead for 2 weeks solid, they felt full of lactic acid? I ached so badly all over.
Saying this I am really looking forward to riding my bike again.
Flow, how often do you read or research your condition? Remember that this fuells the condition. Mayby try and accept the doctors diagnosis, accept youll have these strange symptoms for a while, but 100% stop reading, analysing, seeking reasurrance about your condition (visiting doctors). See how you feel in a month? To help get by find a few hobbies to take your mind off how you feel. This is how i got better.
I did an hour on the turbo trainer about a month ago at HR level 2, BIG MISTAKE! My legs where like lead for 2 weeks solid, they felt full of lactic acid? I ached so badly all over.
Try Rating of Perceived Exertion (Borg Scale) instead and stay low. It's so frustrating initially.
Flow, how often do you read or research your condition? Remember that this fuells the condition. Mayby try and accept the doctors diagnosis, accept youll have these strange symptoms for a while, but 100% stop reading, analysing, seeking reasurrance about your condition (visiting doctors). See how you feel in a month? To help get by find a few hobbies to take your mind off how you feel. This is how i got better.
Alot of truth in there - it's part of it for most people I reckon. Some can switch it off (I couldn't), others need to refocus their attention on things that help rather than hinder. Self-tracking which is objective can help people do that. Flow sounds like he's already refocused and is making progress.
Im a good few months into that now xcracer, you're right it helps.
Analyzing/researching makes it a lot worse but its just human bloody nature to want to know what wrong when you feel so bad.
I have really got into photography whilst I have been feeling "off", which has also helped.
Edit: Thanks JB, I will try that.
Flow, how often do you read or research your condition? Remember that this fuells the condition.
I found the opposite. By understanding what was happening to me, communicating with others in similar positions, and working out how to move forward with knowledge I have gained has made a massive difference.
Weekly update Flow? How you managing?
Currently struggling not to dip back in myself, been having a bad last few days, can feel the tiredness creeping back in and depression trying to take a hold again, desperately trying to shrug it off! This is the first time for me in almost 3 months though, so fingers crosses I'll be alright.
Don't worry, stay positive Mark. I'm sure its just a dip as you've had a lot in your plate recently. Take a bit of time to chill and relax.
Well I got back on the bike (properly, not with my wee lad) for the first time in 7 months on Friday, and commuted 5 miles into work and 5 miles home again. Felt fine at work, but quite tired on Friday evening and Saturday. I haven't been suffering mentally other than huge frustration, but it was hugely positive to be back on the bike on a beautiful Edinburgh autumn day. Just going to give it a go one day a week at the moment, and see if I can build it up gradually from there.
If it helps I've been working with a personal trainer and he's got me working aerobically (Under 142bpm for me) and I'm finding that I don't get that tired in the days after as when I was just riding and going anaerobic.
When I ride anaerobically I'm finding I get pay back on the next few days.
It sort of falls in with the Fifth stage here...
http://www.drmyhill.co.uk/wiki/Pattern_of_recovery
Weekly update 😕
Last week I was sleeping so well and the aching was pretty much gone! I actually felt normal for about 3 or 4 consecutive days. I was planing to go back to college yesterday.
This continued till Sunday when I took the kids to my brothers for a Halloween party. While I was there I ate some cake and drank some ginger beer! Bearing in mind I haven't had sugar, gluten, or lactose till then, I thought I would try it out.
Another bad move!
Sunday night I had almost no sleep, and yesterday I ached so badly.
I didn't get much sleep last night either, but today the aching has died down slightly.
I'm hoping I haven't ****ed up to much and maybe tonight or tomorrow I will get some sleep, hopefully recover and get back to how I was last week.
Sooooooooooooooo frustrating! I really wish I didn't eat that shite, but it did taste good.
I hope you get through this rough patch Mboy, PMA (positive mental attitude!!!)
Ummm 3 cakes fatboy 🙂While I was there I ate some cake and drank some ginger beer!
Two, I didn't eat the third one, its in the kitchen.
Flow - its only a dip. All part of the recovery / learning process 😉
Yeah you're right mate, I wont be doing it again that's for sure.
Thanks for your email the other day.
This isn't exactly relevant...
http://boingboing.net/2011/11/03/gulf-war-syndrome-a-lot-of-questions-few-answers.html
... and it has lots of annoying red text in it, but to those who've had to deal with these things it's very interesting.
Well I'm nearly back to how I was before the slight dip. Hopefully I will start to improve further.
How is everyone else doing?
http://www.livestrong.com/article/205811-adrenal-repair-diet/
Loads of links in the related to read too, I think its pretty relevant for CFS sufferers.