For anyone feeling tired/ floppy / demotivated? Read on......

[Loubprv]

Well, here's something different! This is a very long post but it may help you.

As anyone who's read my posts over the last few years will know, I'm usually a bundle of energy, prattling on about diet and exercise and how fatigue has never bothered me, which is hasn't - until about 5 weeks ago.

I began to feel queasy, tired, demotivated, unable to drag myself out of bed in the morning, nothing desperate, but just absolutely not me, and very very irritating.

So, what's wrong?

I went to see my GP who poked and prodded and announced I must have a little " virus" ( what? for nearly 6 weeks - get a life - or start to look outside the box) and tested me for

1) coeliac ( I haven't eaten gluten for 3 years - must be absorbing it through my pores) negative of course

2) thyroid. Normal.

I moved on.

Saw my wonderful haematologist last week who seemed equally baffled and recommended I had a thyroid test as blood reading normal (and anyway, I don't think it's polycythemia associated)

So, where to go from here.

I don't believe in putting up with things so, much against my better judgement, I made an appointment to see a holistic nutritionist.

THIS IS THE INTERESTING BIT, DON'T tune out.

I was expecting incense and a feather dance.

What I got was an extremely intuitive, intelligent and well informed lady.

She took my blood pressure, heart rate etc, examined my tongue, grilled me for an hour and a half as to diet, lifestyle, medical history, even the conditions under which I was born, as well as a few other bizarre tests and questions which obviously made a lot of sense to her but not to me.

Then she asked me if I'd heard of adrenal fatigue, something that is usually catalysed by a stressful unhealthy lifestyle ( not me I protested!) but also by chronic illness and medication. Aha.

Now, your GPs and haematologists will click their tongues and raise their eyebrows at this because they're trained in conventional medicine. Don't listen to them.

I'm awaiting results of various tests the intricacies of which I won't go into here, and I have adapted my diet and lifestyle according to recommendations and am already feeling a bit better.

No, it isn't mind over matter or all in my mind - as has been suggested - I'm far too down to earth, sensible and intelligent for that - and I know the workings of my own body too well.

What I'm saying is, if you ARE feeling knackered, demotivated, unable to concentrate, in need of sweet sugary stuff to keep you going, too tired to get out of bed in the morning despite sleeping well, find a good holistic nutritionist. It may just help.

Meanwhile, watch this space and I'll let you now how I get on.

Google adrenal fatigue, there's quite a bit of info, and go onto amazon if you're interested.

There are a number of books that you can order - mine is by a doctor called James L Wilson. American but easy to read between the lines.

The tests that I'm undergoing are by a company called Genova which you can also google.

If you'd like to email me then it's [e-mail]

Best wishes

Louise

Ps that's me in the hat by the way...

[Phelpsy]

Hi Louise ,

That's really interesting stuff you've shared , our body's are a wonderful piece of machinery !!! I to would be very interested in your results , I have ET and suffer a fair bit of fatigue some days sleep upto 12 hrs day ,

like yourself I know my body pretty well ,

I will definitly get a book ordered

Thanks for sharing ,

And good luck with your results x

Pam ( in Newcastle )

[Loubprv Volunteer in reply to Phelpsy]

Hi Pam,

Well, you never know.

I believe in exploring every avenue!!!

X

[Boss1]

Hi Louise,

Great stuff. Good to see a post like this. I have been an a sensible good diet (mainly old fashioned unindustrialised food) recommended by a qualified medical Herbalist since my diagnosis 18 mths ago (PV, Jak 2 positive). I'm 53 an have more energy than pre diagnosis! I don't suffer from fatigue at all but I think this is also because I'm not on the usual drugs yet. I'm only on Asprin with the occassional venesection but I really believe there is a connection between there what I'm doing with diet, exercise and keeping the Haematocrit low. Platlets about 550.

Conventional doctors are not trained enough in nutrition. My Haemotologist thinks what I'm doing is having an effect (she was sceptical at first). I allow myself the occassional coffee and glass of red wine. I eat 85% chocolate (very good for you!) and tend to have very little red meat, less carbs, I have plenty of fish especially oily fish, poultry (any animal should be grass fed as much as possible and not so much grain as this is inflammatory), loads of good veg and dark fruits (not so much citrus), nuts, some dairy but should be organic, and very important to keep hydrated and drink green tea every day.

The research money comes from the drug companies. The whole of western medical is obsessed with a drug to fix things. If they see a connection with diet and diabetes and heart disease, I cannot for the life of me understand why they can't fathom a connection with diet and lifestyle and all disease! I'm not saying it's what has caused it, but the body needs to be in the best possible shape to do as well as it can.

Vanessa (in Devon)

[jeanr in reply to Boss1]

Interesting post - I enjoyed reading about your nutrition.

[piggie50 in reply to Boss1]

Hi Vanessa,

Whereabouts in Devon are you? I'm in Exeter.

Hi Louise, interesting post, I'm also thinking if getting a nutri bullet! I hope the family are all ok?

Judy x

[Boss1]

Hi Louise,

Forgot to mention in my last reply, I do exercise moderately everyday as I ride a bike around town which I didn't do pre diagnosis. I think this also keeps my stress levels down a bit as I'm quite a stresser! Also I try and keep all sugar down. I do fail at this, I must say, but I keep trying!!!

[Loubprv Volunteer]

Hi Vanessa,

Thanks for your super reply, I think most people who read this are under the impression I have a screw loose!

I'm 60 and have had PV for 6 years, take 1000mg HU 5 days a week and 500mg HU 2 days a week plus aspirin. Also levothyroxine but only 75mg - a low dose.

Three years ago I had a massive reaction to a 7 month dose of a ghastly antibiotic called Nitrofurantoin. Not only did it cause a rare but known side effect called peripheral neuropathy ( severe nerve damage) but also made me hugely intolerant to many foodstuffs - everything and anything treated / sprayed with preservatives, additives, chemicals etc as well as nuts, fish, and dairy produce - inc organic .

Total nightmare.

I complained to the GP s four times that I had every side effect in the packet but they assured me side effects are very rare with this antibiotic ( try googling side effects Nitrofurantoin - they blatantly lied) and to carry on taking it. I'd been a patient for 25 years and trusted them. I had a ongoing urine infection. In the end I saw a brilliant private urologist who insisted on having a look in my bladder and found a massive burst abscess.

He was actually extremely cross and short of calling the GP s reaction to my complaints diabolical' he was hopping mad. If they'd referred me in the first place I would have neither nerve damage nor food intolerances.

Am currently trying to sue. The GP s names are Chris Stokes and Sarah Watson in Windermere Cumbria and I don't care who knows!

I do eat chocolate too I'm afraid and yesterday scoffed the best part of half a bar of green and blacks organic Anglesey sea salt. Paid the price as it kept me awake half the night!

I also eat meat every day I'm afraid - would much rather fish but can't eat that.

Anyway, I make sure it's all organic .....

Have just ordered a nutribullet from Lakeland as well, as mentioned by dear Violet (Twinkly) they must be good as John Lewis and Lakeland have sold out.

I'm with you, we are what we eat, but sadly the doctors just haven't twigged. Either that or they're all in league with the drug companies. The latter I believe.

What a shame you're at the other end of the country we could meet and have a great old chin wag - and a cycle ride!

Best wishes

Louise

Windermere , Cumbria.

[jeanr in reply to Loubprv]

I was very interested in your post. Before I was diagnosed with ET I had a continuous recurring urine infection which was quite bad, and kept being given antibiotics which also made me unwell. I think my body finally healed itself after a year. I do not live in the UK currently (but I am from the UK) although some Drs are wonderful some seem quite keen to write a prescription and move you on which I think is why we have to be our own advocates and speak up.

I will end with a chuckle - I had no clue what a nutribullet was (I thought it might be a container of organic veggies) so had to look it up!!Jean from Canada

[Loubprv Volunteer]

Hi Jean, well there's an idea.

They seem to be all the rage here - hope it works as they're not cheap ( £99.99!).

Louise

[Twinkly]

Hey Louise ..the. Best thing about the nutri bullet ,you can have fruit and veg that you sometimes can't. Chew ,of maybe can't digest ..I can't eat pineapple or apples ( too hard) but now I can have those again ..if add a banana it tastes like thicker milk shake .on days you are not hungry just mix up a shake to get the goodness inside you ..easier to digest add a spoon of honey for energy .its well worth it .. Keep twinkling ( love the hat ). Xx

[Hidden]

i mix up ones with greek yoghurt (protein) and banana, and a few blueberries. Kale is meant to be good too

[Loubprv Volunteer]

Yipppeeee, can't wait to try it. Have just ordered one for my daughters boyfriend too.

x

[spikesnana]

I too have had the same problem. I can't tell if I have the flu or PV related. I went to endocrinologist and had thyroid and adrenas tested. Thyroid low and have Hasimotos. But didn't suggest anything. Not even going gluten free. He was bad. Need to see someone else.

[Loubprv Volunteer]

Hi,

Well, much as brilliant some conventional doctors are, they simply don't look outside the box.

I gave up with that malarkey and found myself a decent holistic nutritionist - as I said I've always steered clear of "holistic" but this lady has tested me for more than the doctors have.

It's not cheap but worth every penny if it works.

Go on amazon and buy a book called adrenal fatigue by James L Wilson - see if it might apply to you. It may not of course.

You never know, it may help.

Meanwhile watch this space and I'll let you know how I get on.

Just as an aside, a dear friend of mine saw an endocronologist for two years, feeling grim.

He tested for thyroid problems etc to no avail.

She finally ended up with Graves' disease, a knock on from an incredibly over active thyroid and quite quite horrid - she's had follow on eye operations as well feeling dreadful.

Endocronologists aren't always reliable, if in doubt, seek a second opinion and go privately.

Your health is worth everything.

Louisexx

[Loubprv Volunteer]

Ps hi Violet and thank you for the hat compliment.

We were at a lovely country wedding ( on a farm as you can see! ) and my lovely husband kindly deposited my hat in the car for safekeeping.

What he didn't tell me at midnight was that he'd put it on the front seat.

Pitch black and neither of us could see much - so of course I sat on it.

Men.

And Hi judy,

All well here thanks, such a shame you're so far away, wish I could find someone here in Cumbria......all ok with you?

X