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.
Hmmm, will look into that flow. Been noticing one thing about my eating habits recently, and that's I've been getting cravings a lot worse than I've ever experienced before. I'll suddenly get a mad craving for crisps (probably cos they're salty) and it won't be satisfied until I've had a couple of bags, then a couple of hours later I'll have a massive sweet tooth on, and crave chocolate as if I were a pregnant woman! 😕
Otherwise a bit better than I was a few days ago. Think a couple of good nights sleep, and some reassurance has calmed me down a bit. I was stressing about all sorts of things I could not control, and dwelling on the past a little, and it felt like I was entering a massive downward spiral as I was exhausted even doing nothing again. A bit of PMA, time around friends and family, and keeping my mind occupied as well as lots of sleep, has all improved things for now.
Anyway, big bike ride next Sunday which I'm guiding for a number of friends, so I've got to make sure I'm in tip top condition for that if nothing else!
Glad you are feeling a bit better mate, PMA and sleep is extremely important.
I just found this five page article which is a very interesting read, and it gives some good guidance.
http://www.drlam.com/articles/adrenal_fatigue.asp?page=1
If I knew what I know now a year ago, things would be so different!
After having a read about that, I now know why I fech up after eating sugar.
Been having a major setback in the last few weeks, having been a lot better previous to that. Been feeling really fluey and tired and not ridden my bike for ages. 🙁
Ahh not good grum. I am yet to get back on the bike, dreading it to be honest.
Diet is the key dude, along with sleep and no stress!
Flow - I know what you mean about if you'd known that earlier you wouldnt be where you are now. I'm the same, but because the condition isnt readily recognised in the uk you don't hear much about it until you have to find out.
Don't dread your bike, look forward to it, the more you worry the more stressful it'll be. I'd say start off with some gentle rides (hr under 140bpm) when you feel able. I'm just doing short easy rides at the moment and is making me feel better. I Expect to be fully back on the bike in the spring but may have a few cheeky ride between now and then.
I might have a really slow ride on my brothers turbo trainer tonight, not sure though. I didn't sleep too well last night, so I'm thinking it might help me sleep better.
I'd say start with 10mins slow and see if it helps
Thanks mate, I will try that tonight.
The doctors sent me a letter today saying they want to do a repeat blood test for some reason. Pretty strange, the last time I saw him he was pretty final about his diagnosis of CFS, and said he wouldn't need to see me again.
I have just been reading [url=www.drlam.com]this site[/url] and there is an amazing amount of information on there, all free of charge. He answers your question for free and you can also phone him on a free phone number.
Has to be the best site I have come across so far, along with Dr Myhill's site, most others are out to get your money.
Well I'm 7 months into PVF and was back to the docs yesterday. When I'm well rested the breathless I've been suffering takes until moderate exercise to kick in. When I'm tired, it's there the whole time, like a light pressure on my chest.
Doc was quite worried, so more blood tests yesterday, and then cardiologist and infectious diseases to see if there's anything else up. Feel as if I'm back to sqaure one, and for the first time, it's starting to get me down.
However, PMA and I'm going to start going through Dr Myhill's website and start implementing her advice...we'll see.
Good luck.
DO NOT LET IT GET YOU DOWN! That is the worst thing you can do. When you are feeling like that, go somewhere and relax, listen to relaxation tapes, whatever makes you feel calmer.
There is a ton of info just on this thread that WILL make you feel better. There is so much you can learn to lessen the effects on the web too.
Here's some more cfs reading for you and there's a lot of good stuff on this site. I've joined their Forum for thyroid disorder and it's been invaluable:
http://www.thyroiduk.org.uk/tuk/pages/conditions/fibro/effective_cfs.html
I've been reading that site recently funnily enough
Dont let it get to you. I had the breathlessness as well and had all the tests but nothing was found. I even had a chest xray.
The underlying cause was anxiety. Too much worrying/analysis/searching for what was wrong. I had tons of books, hundreds of internet links. (For a long time it was my life).
Google panicend forum, some brilliant information on there, not just about panicattacks (which is driven by a fear of them) but also anxiety symptoms. But to cure yourself youll have to stop reading about what might be wrong.
What xcracer1 says is 100% true.
The last visit to the doctor, he told me it was due to stress, I decided to believe him, now I'm feeling the benefits. It might be a coincidence, then again it might not.
I have done everything I can do physically. I have totally changed my diet, take all the necessary vitamin supplements for general health, I take melatonin (got it online for the states) which is helping me sleep, and I have given up looking for reasons why I feel the way I do.
From now on, whatever happens, happens. I have given up worrying about it, there are no benefits from it, and it will only make you feel worse.
It isnt coincedence flow, thats the way to recover. All you have to do now is stick to it for a month or two. Remember you will still feel your symptoms during the recovery period, its all natural. Some people start questioning the method when they dont see immediate results and fall back to their old ways of analysis/worry.
flow - are you still keeping to your new diet regime? Do you feel that had a bearing on your health? Yes, I can see what you are saying, the over-thinking/analysis etc. Follow your instincts.
Good luck and your bike will be there for you. 🙂
I am sticking with it yet, it has definitely helped too. I would recommend it.
Thanks for the support.
How are you doing?
I want to know how Mboy is getting on too.
However, PMA
DO NOT LET IT GET YOU DOWN! That is the worst thing you can do.
VERY easy to say, often much harder to implement. It is the key to getting better in the long term, but just maintaining a PMA for a length of time can be more than difficult enough in itself when faced with it. Without going into too much in the way of personal details, I have at times over the last few months questioned the "reason for being" and this in itself is not a good thing. It can only take one or two things to happen to get you into a big negative spiral as I have found out, can be as simple as a rejection (job interview, GF, many other things) combined with something to get you slightly stressed, and hey presto... You're back to square one...
Except... As I've learnt you can minimise the effects of stress on your physical health quite simply by getting fit and healthy. It's hard, and it takes motivation, but I learnt earlier this year that for me personally it was much easier to get (and stay) reasonably physically fit and active than it was to remove all stresses (have removed a lot) from my life, so that's what I did... OK, I've not touched a bike in 2 weeks currently, but other than that this year so far I've done more cycling than I can remember any other year, and been to the gym 3 times a week for the last 6 months. It has worked, as even when I'm stressed, I don't immediately start hibernating again due to the onset of CFS!!!
I want to know how Mboy is getting on too.
Cheers fella, nice to know someone cares! 😀
Seriously though, had a REALLY bad week or two personally, again without going into too much personal detail I've just found it hard not to be negative recently. First time in a couple of months it has happened though, and there have been a few triggers all within a few days of each other (feeling worthless as can't get ANY part time job right now despite having applied for hundreds, feeling rubbish cos I know CFS will limit by ability to live a "normal" life for a long time to come and that at 31 it is seriously limiting my chances of potentially entering another long term meaningful relationship, got knocked back by a girl I really liked and thought she was into me, car needs a tonne of money I've not got spending on it to get it through next MOT!). Tonight though, been to see Milton Jones live on stage in Brum and well... Personally I find him hilarious! So thanks to my Dad for taking me, as I've had a right good laugh, and am feeling better for it. And tomorrow I'm off out on the bike in the Forest of Dean with a few friends, so should be a good laugh.
Seriously though, if there's one thing I cannot bang on about enough it is the positive effects of exercise, and specifically for those of us on this forum, riding your bike. DO NOT be scared by it. So what it might take months to regain fitness to that you had before, it doesn't matter... It's not a competition. It's about making yourself feel better, and in that respect, there is no substitute! I'd say of all the people I know, those that are happiest are the cyclists I know that ride their bikes (for leisure rather than just commuting) the most. It really does seem to be that powerful, and I know I'd be in a lot worse shape now mentally and physically if it wasn't for riding. No excuses, just get on the bike... Start small, build it up slowly, take your time and don't expect to be as fast as you were for a long time, but just have some fun!
