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 this site 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!

Can anyone think of what may have caused their PVF in the first place?

For example I had 3 things that had happened to me before hand, which were really stressfull and having an effect on my life before I became ill.
In hindsight, there was nothing I could do to prevent them happening, however because they all happened at once I’m confident they were the start of my illness.

Also there is hope at the end of the tunnel, I’ve been pretty well now since beginning of June, with only the odd day.
It’s just my low immune system that causes problems now.

mboy – you ar so right about the cycling. It has been my saviour, one of my reasons for living and I implore anyone who is ill to go out on their bike as much as possible. Just a simple pootle along a park track will help.

Glad your still managing to stay positive though Mboy, I know exactly what you mean, its damn hard and doesn’t take much to get stressed at all.

Can anyone think of what may have caused their PVF in the first place?

Yeah definitely, a hell of a lot of emotional and physical stress. This is how the story goes without going into too much detail.

I started a job and absolutely hated it whilst going through a very rough patch with my GF, then my dad passed away, and I lost the job.

Then small things really stressed me out. I sold the car and was really stressing about getting another one, we got a parrot and was stressed about that, then I got a virus which lasted 2 months. From here on it was a very steep slope.

When the virus passed it left me with really bad insomnia and other strange symptoms, and I stupidly thought that riding my bike everyday (physical stress) with no sleep wouldn’t do me any harm.

We went to Scotland to visit my GF’s family and whilst there I went to the doctor. He gave me some sleeping pills, result I thought. I slept like a baby the whole week, but still felt ill.

I had also booked a Five Pro for the day at GT. I wanted to make the most of it so I rode the black, red and blue in under 5 hours. I didn’t think anything of it because I was sleeping from the pills.

Then we got home, I stopped taking the tablets and got the mother of all withdrawal. It was like withdrawing from Heroin (apparently so I have read) This is when I was at my worst. After that its pretty much a blur of illness.

Interesting.

I’ve spoken to a few people and they say it all started with at least 2 major (if not 3) stressfull events.

Flow – yours are enough for the body to close down for a while. Which I think is what happened in my case.

Interesting.

I’ve spoken to a few people and they say it all started with at least 2 major (if not 3) stressfull events.

Thats why I think its related to your adrenal glands.

My body was f*cked.

From the 4/7/2011 – 19/8/2011 I rode 411 miles on sportstracker, which was way to much for my body at that time.

I had insomnia, aching muscles and joints, tingling/itching under the skin, night sweats, palpitations, shivers/felt majorly cold, anxiety mixed with depression, brain fog and all sorts of strange symptoms.

Writing that just then and thinking how I am now, I have come a bloody long way in a short space of time.

I’m now just left with aching and slight insomnia.

Forgot to say I joined the gym. I’m starting swimming tomorrow to get my blood pumping a bit, then in the sauna and hot tub for relaxation afterwards.

Most helpful and encouraging post there from mboy. 🙂 Good to hear that exercise has been your saviour and long may you continue to remain positive.

Has been quite enlightening reading (most of) this thread. I am 100% certain that my underactive thyroid has been caused by experiencing the majority of the top 10 most stressful life events happening in a short space of time.

As I’m unable to ride (waiting on shoulder surgery due to bike accident), walking, or should I say ambling, has been the only exercise. Have managed between 3 – 4 miles, getting out of breath, stopping for a rest, painful shoulder etc. But the sunshine makes it all worthwhile and glad I kicked myself out of the door!

PMA is the name of the game. 8)

c_g – keep going lass. You will get back on the bike.
You could always come over to ‘Hit the North’ and help me marshall in February.

Thanks Bunnyhop and do hope your recovery continues to go well. 🙂

I know it sounds a strange thing to say but am finding it very difficult to interact with folk in a face-to-face situation. Just tending to prefer my own company, probably cos I’m so miserable!

c_g- Yep – totally understand where you’re coming from. We’re living in a society of quick fixing. Illness is often a slow process, needing patience and time.
I still get quite tired and sometimes find it hard to speak (sounding a bit drunk), so often end up riding by myself or just enjoying my own company.
You can’t expect to be cheerful after all you’ve been through. However there is only one way to go now – UP.

Bunnyhop x

Been off with Bronchitis for Two weeks first set of Antibiotics done nothing
But end of second course, i feel better today but still have this cough.
Just hate being un well 🙄

Most helpful and encouraging post there from mboy. Good to hear that exercise has been your saviour and long may you continue to remain positive

Cheers, it’s difficult though!

I know it sounds a strange thing to say but am finding it very difficult to interact with folk in a face-to-face situation. Just tending to prefer my own company, probably cos I’m so miserable!

Far be it for me to tell someone what they should and shouldn’t do 😉 but IMO this is not a good thing… I speak from LOTS of first hand experience here, and spending too much time in your own company usually means too much time reflecting on the negatives and is counter productive to improving your mood. Sure, it’s not always easy to find people you know and trust well enough to be able to deal with you all the time if you are in a bad mood, but just getting out the house and mixing with people does make a difference. It’s immediately obvious to others if I’ve just been sitting around at home on my own for days, put it that way, and not in a good way.

I started a job and absolutely hated it whilst going through a very rough patch with my GF, then my dad passed away, and I lost the job.

Then small things really stressed me out. I sold the car and was really stressing about getting another one, we got a parrot and was stressed about that, then I got a virus which lasted 2 months. From here on it was a very steep slope.

😯
A scary number of parallels in there for me… My Dad didn’t pass away, but bad times with the (now ex) GF, job etc. all very similar for me. As was the getting a virus, and being knocked sideways.

Anyway, good ride today, feeling better cos of it. Maybe I’ve just struggled more than I would have done in the last 2 weeks cos I’ve not ridden my bike in that time! Who knows…

Yeah I think you’re right about negativity! I did become very self-conscious – sometimes even talking to people I would become out of breath, frequently forgot words/lost my train of thought. Also self-conscious about my appearance – cos with underactive thyroid your body slows down so subsequently my weight has ballooned due to metabolism not working. Also have so much hair falling out around the house, it reminds me of a moulting dog!

One thing I did do, and made a huge difference, was to forget about the routes I used to ride. I studied the OS map for bridleways that I hadn’t used and went out to investigate them. Effectively I took the pressure off myself by thinking I could climb that hill in the middle ring or whatever. Totally changed my way of looking at riding by treating as an exploration.

Thanks for sharing your experiences and thoughts. 🙂

Well, I’m feeling in a much better frame of mind than I was last week. A few niggle work and finance problems last week, in addition to the visito to the docs.
Anyway, had a lovely relaxing weekend with the wife and kids, who were a breath of fresh air and full of fun.
I’m speaking to my ‘witch doctor’ contact this afternoon on the phone, in advance of our meeting on Friday. I get the impression she’s going to be similar in thought to Dr Myhill in the links.
I’m doing a little detox for 3-4 days to cut out the sugar, beer etc that I have been eating too much of. Always leaving me feeling refreshed, a few pounds lighter, and back into better eating habits.
And I’m going to make it for a swim and sauna one night this week, and I MUST get some early nights.
I’ll report back with what my witch doctor says, but I’m feeling positive and better this week, so onwards and upwards…

And as for the start of my PVF – I think the virus struck as I was probably run down, too much burning the candle at both ends, looking back I was quite stressed and rushed off my feet at work, and then trying to ramp up Ironman training…but thankfully none of the big events that some of you were going through…

remove all stresses

Just picking up on this point. I’ve tried to remove all stresses, whether it be at work, home or even in my own mind (ie hangover leaves me thinking I’m relapsing so I now sadly avoid beer) but I think you need to go further than this as you can’t get rid of all stress.

I believe rather than trying to remove all stresses or avoiding them, I need to focus more on how I consciously and more importantly subsconciously react to stressors.

For about a year before I hit the tipping point I was constantly monitoring how I felt, whether I was ill or not (I seemed to come down with something after every ride) – now I’m thinking that I’ve trained myself to get anxious subconsciously when I don’t feel right. Something I am working to overcome but is damn hard.

The mind controls the chemicals which make the body function, whether this be the stress chemicals (cortisol / adrenaline) or hormones etc. I looked at the effects of too much adrenaline on the body and realised it read like a list of my earlier symptoms.

Anxiety sufferer here….not been so good of late, but feeling ok today. I had a collapsed lung and dengue fever plus a high stress job in social work all in a short time. que major panic attacks, fatigue, constant body pain…suffering from a lot of the above and till now have managed without drugs (how i dont know) have tailored life to fit and things have worked out ok, great wife and kids and dad who really suport when needed plus a great well paid SE 24hr a week job that requires no driving and loads of holiday/flexytime.
its all abou balance for me; diet, sleep, exercise etc. too much or little and things go skew. cant leave the house sometimes! cant be on my own and even get attacks on rides, which pisses me off no end. mboy/bushwacked not too far from me could ride out in solidarity sometime?

Slightly major update.

I finally figured out last week what was causing me to ache and have restless sleep.

Last week I noticed my aching was slowly getting better, and I would have hours or days pain free. I had been doing some stretching, and initially thought this might be why.

On Monday I was feeling pretty good all day. About 30-40 minutes after eating dinner I started aching really badly. I thought it was a bit strange so I did a quick bit of a research and found that it was most likely something to do with blood sugar.

I thought I would give it a few hours and not eat anything to see what happened. After a while the aching gradually died down. Roughly three hours later the same thing happened even though I hadn’t eaten, so I quickly made myself egg on toast, ate an apple and drank some fresh orange juice. Within 15 min the aching had stopped.

Armed with this, next morning I made an appointment with my doctor, I thought we might finally be able to get to the bottom of things.

I told him what had happened expecting him to want to find out why it was happening. Instead he told me I wasn’t diabetic (not that I thought I was) as I had already had my blood sugar levels checked. He refused to do any more testing, and gave me the same old “its all in your head” blah blah blah.

Pretty pissed off when I got home, I decided I might as well change doctors again. There was one pretty close that was supposed to be really good, so worth a try.

Whilst waiting to be registered I did some more research. I found that chronic stress and high/low blood sugar go hand in hand. Basically cortisol, a stress response hormone produced by the adrenal glands also regulates blood sugar. If for whatever reason your cortisol levels are messed up, it will severely affect your bodies ability to keep your blood sugar int the correct range.

Whilst I was at it, I also found out that my muscle twitching, which has been so bloody annoying was due to an electrolyte imbalance.

One of the symptoms of unstable blood sugar is muscle and joint pain. Also the number one cause of insomnia is unstable blood sugar.

So finally I got to see my new doctor. I explained all my problems over the past six months, and told her my conclusion from my research.

She agreed that my current symptoms were most probably blood sugar related, and arranged some more blood tests. Finally I might be getting to the bottom of things!

So since then I have been eating a low GI diet, trying to keep my blood sugar stable. I have found that if I eat something with fat, carbs and protein before bed, I can pretty much sleep all night.

Its been pretty difficult to be honest, eating six small meals a day makes you hungry! You would think it would be the other way round, but it actually speeds up your metabolism.

Sorry for the waffle, I have been banned for 7 days and been wanting to tell you lot for ages!

Its not all good though, I got tonsillitis again on Friday, damn it!

Edit: I also feel pissed off for the rest of the people out there who have been told they have CFS/Fibro/ME.

If I hadn’t been so determined to get to the bottom of this and accepted the diagnoses of CFS, who knows how I would be feeling in 5-10 years time.

remove all stresses
Just picking up on this point. I’ve tried to remove all stresses, whether it be at work, home or even in my own mind (ie hangover leaves me thinking I’m relapsing so I now sadly avoid beer) but I think you need to go further than this as you can’t get rid of all stress.
I believe rather than trying to remove all stresses or avoiding them, I need to focus more on how I consciously and more importantly subsconciously react to stressors.
For about a year before I hit the tipping point I was constantly monitoring how I felt, whether I was ill or not (I seemed to come down with something after every ride) – now I’m thinking that I’ve trained myself to get anxious subconsciously when I don’t feel right. Something I am working to overcome but is damn hard.
The mind controls the chemicals which make the body function, whether this be the stress chemicals (cortisol / adrenaline) or hormones etc. I looked at the effects of too much adrenaline on the body and realised it read like a list of my earlier symptoms.

Thats what happens during an anxiety disorder. By behaving ‘scared’ you teach your subconscious to react scared when presented with the symptoms you are scared of. The way to retrain your subconscious is to face the symptoms, let them happen, but don’t react in a scared way. Ie rush to the doctors, seek reasurrance, read books about it, google it. When you feel the urge to do this do something else(diversion). Anything non anxiety. You are then slowly retraining your subconscious, a part called the amygdala, that this is NOT dangerous, the amygdala eventually gets the message (a few weeks) and the danger alert/symptoms are switched off. However your response has to be consistently the same all the time, so during recovery you will get and feel a lot of strange symptoms, and you are going to behave normally as they are not there. You wont have to do this forever as after a few weeks of this new behaviour your symptoms/anxiety goes away and your subconscious adopts this new behaviour. So you will stop the automatic testing you subconsciously do to see if these symptoms are still there. The decision how to react is always yours. Hope this helps someone.

Well done on hopefully getting to the bottom of it! I think one can get so used to aches and pains that they cease to register so you did well to observe the pattern.

Just out of interest (ahem) did you have to explain to your new GP why you switched? Curious cos where I used to live, I questioned his diagnosis and was told see another. Keep thinking there is an acronym on my records. 🙂 Not sure if my new GP is taking me seriously either.

How do you manage to find time to eat six meals a day? One thing though – the carbs you’re having – are they refined?

Do keep us posted, there seems to be a few of us sickly folk on here. 🙂

That’s interesting, as I too found that snacking, rather than eating the set 3 meals a day was so much better.

In fact I could probably graze and feel better.

Does anyone get really cold in the winter, I mean even in doors with heating on and layers upon layers of clothing?

Well done on hopefully getting to the bottom of it! I think one can get so used to aches and pains that they cease to register so you did well to observe the pattern.

Thanks, hopefully I will be on my bike sooner than I thought.

Just out of interest (ahem) did you have to explain to your new GP why you switched? Curious cos where I used to leave, I questioned his diagnosis and was told see another. Keep thinking there is an acronym on my records. Not sure if my new GP is taking me seriously either.

I didn’t say anything to this one at all other than a brief history of the symptoms, the stress I was under, and my current symptoms now. I have found they take you very seriously before they see your noted for some reason (she doesn’t have mine yet)

How do you manage to find time to eat six meals a day? One thing though – the carbs you’re having – are they refined?

I’m still not back at college so I have plenty of time to eat 😀

I am still eating mega healthy though, complex carbs, veg, fruit etc. No refined sugar, simple carbs, caffeine, alcohol, or processed crap.

Still taking supplements too, but found that vitamin B5 is extremely important for hormone production so added that, and chromium helps regulate blood sugar so added that too.

Current supplements are;

4000mg Vit C
240mg Cod liver oil
1500mg Vit B5
500mg Magnesium
200UG Chromium
Acidophilus

Does anyone get really cold in the winter, I mean even in doors with heating on and layers upon layers of clothing?

I have read that could possibly be thyroid or adrenal problems. Look into it, theres quite a lot to read.