Has anyone suffered and recovered from this? I think its pretty likely I have it, I have been tested for everything else known to man and all the tests come back clear.

It started after being ill for a about 6 months ago after a viral infection (strange eh!) since then I have had severe insomnia, aching all over like I have the flu, and chest pains amongst other things.

They gave me anti depressants for sleep which worked at first, now they are starting to stop working 🙁

Its really getting to me, I cant ride my bike because I feel extra shite after, in fact I feel shite after a day of doing nothing.

Any suggestions? Anyone got or getting through it?

Any advice would be muchly appreciated.

Do you recall being bitten by a tick at any point?

I would suggest a graded return to exercise. You might have to stay off the bike for a few months. Swimming and saunas are a good combo for building yourself back up again. Speaking from experience here.

What antidepressants are you on? I found amitriptyline to be helpful (I had ultra-low doses to help with sleep and the flu-like aches).

Flow – there are a few of us on STW who are indeed sufferes. Of the ones I know of, it’s getting easier as time goes on.

Its a case of resting and taking things easy. Not easy when you’re an active person I know.

http://singletrackworld.com/forum/topic/post-viral-fatigue-has-anyone-recovered-from-this

Have a read of this ^^

Thanks for the replies.

Flipiddy – I don’t recall being bitten by a tick. I just googled tick bite and it looks like it would have been pretty memorable, some of them look nasty!

At the moment I can’t ride my bike at all, I tried last Monday and have only just stopped aching. I’ve not tried any other forms of exercise yet. I just started a photography course at college 3 times a week, even that’s a real struggle.

I’m not tired in general, more my whole body just feels knackered like its had enough.

I asked for Mirtazapine because I knew it made you sleepy, my sister takes them.

Bunnyhop – After reading that thread it seems more likely that I do have it. I have read on the net that insomnia can be a symptom, although you would think you couldn’t keep yourself awake, I’m the opposite, I can’t get to sleep (naturally) no matter how tired I am. When I do, its only for a few hours max.

I found doctors to be fairly unhelpful – once they have done the blood tests to rule out anything ‘serious’ they are not interested basically.

I found this out today, after my 50 thousandth trip to the doctors. She basically said all the tests have come back clear, there is nothing she can do/there is nothing wrong with me.

Being off the bike and generally not being able to do much is really starting to get to me, I don’t even feel like making fun of people on here anymore 😥 I understand why it makes people depressed. I think the fact I don’t actually know if I will ever be back to normal makes things worse. I have to keep my hope up I guess!

Flipiddy, my brother just phoned and said exactly the same thing as you, pretty strange.

I googled Lyme disease and it sounds pretty much exactly what I am experiencing. Couple that with the fact I have been riding in all sorts of tick infested areas for the past 15 years, there is quite a high possibility this might just be it! Insomnia is one of the major symptoms too.

It’scaused by post viral debility, would describe in depth but. Cant. Keep. My. Eyes. Open………..so tiredzzzzzzzzzzzzzzzzzzzzzzzz!

Dr Nick, could you stay awake long enough to elaborate please? I’ve suffered with this in the last 18 months and got through it, but since getting another virus in the last month, I’m concerned I’m back on a slippery slope.

Major problem is the dismissive attitude of GPs to this. How does one tackle that? I’ve just been labelled as a neurotic depressive when I KNOW at times this is definitely physical (whilst having psychological impact).

Some people can suffer badly with non-specific muscle aches, stiffness and weakness whilst taking Mirtazapine.

I struggled badly whilst on it for the first time, but the second time had no problems. My Dad struggles with it. But, given everything else you describe this is more than likely not your problem, but worth keeping in mind.

Flow – do You have any supportive relatives or really close friends who can help you out? I found simple evryday things like washing, shopping even getting dressed a mountain to climb, they then became a hill and in time everything became easier. This all takes time. You need people to help with the shopping and chores.

My trick was to take each day at a time (I was off the bike for 7 months at first), then sporadically after then.

I then gave myself a goal, which is what kept me sane. A small goal, but something to aim for.

Change doctor if you can.

Thanks GJP, I had the aching etc before I started on the Mirtazapine though.

Bunnyhop – Things are quite difficult at the moment, to be honest you wouldn’t think I was ill by looking at me, sometimes I think people think I’m making it up. I go on about it so much I think everyone is sick of hearing me talk about it. I haven’t been this ill for this long ever. I will definitely be changing doctors asap, and asking for a test for lymes disease just to be on the safe side.

I actually remember being bitten months back! I thought it was an ant bite but thinking back at it now was way to big to be one. Hopefully this is the problem and I can get it sorted!

sometimes I think people think I’m making it up. I go on about it so much I think everyone is sick of hearing me talk about it.

I know how that feels. 😐

I also went down the route of getting tested for Lyme disease, more than one type of test, but they all came back negative – if you look into it though you discover that there are very few places that can test for it reliably. It’s worth looking into though, but don’t necessarily get your hopes up. Sorry!

BTW, it’s now about 2 years since I got ill – exactly the same thing where I had a nasty cold/flu type virus and never got properly better. I spent at least 6 months off the bike completely. I am a lot better now though – did a 2 week road trip to the Pyrenees with a few days of walking/biking included, and have been out biking about once a week since I got back. Still feel knackered a lot and don’t sleep properly though.

I’m not back to how I was before I got ill, not sure if I ever will be, but I am doing more and more all the time I think. Easy to get into a cycle of feeling better, then pushing yourself and making yourself feel crap again. Still haven’t quite got out of that habit.

What grum says is true.
On good days I feel almost normal and sort of forget that i’m ill, then I go mad and suffer for a few days/weeks after. Also I can put on an oscar winning performance when it comes to dealing with work and customers.

That is the annoying thing that you can look perfectly well and feel like death warmed up.

I believe things will get better for you. Atm. though just concerntrate on doing what you can, eating plenty (I find snacking is good), keep you energy levels up and try not to get cold.

Let us know how your test results go?

Thanks Bunnyhop.

I managed to get a blood test for Lyme Disease tomorrow, and change my doctor all in the same day.

flow – good luck with the test tomorrow.

Like grum says, the NHS ELISA test is considered unreliable. If you do come up with a positive, then a month of antibiotics, which is the standard NHS treatment, may not be long enough to cure you. You may come up with a (false) negative, in which case you will get little support from your GP.

If you strongly believe it is Lyme (if the clinical symptoms support a diagnosis and you and your GP have ruled out other possibilities such as candida, lupus, etc) then do yourself a favour and get it looked into privately. If you have the finances to do so of course 🙂

ILADS is very good for information on treatment protocols and options. This is a good starting point.
Eurolyme is a good source for asking questions about symptoms and where to get treatment

Get in touch if you need any advice…

Thanks mate, some really useful info there, nice one.

No worries buddy, good luck!

I have felt knackered most of the time since 1996 I had a couple of good seasons on the bike but have felt debilitated for years .I have had god knows how many blood tests all of which are negative. It really gets to me at times I can feel tired for days despite not doing much and trying to get really fit again is difficult because of this

You might have a food allergy, like gluten or dairy if tiredness is the only symptom. Problem is in reality it could be lots of things, so finding the cause is difficult as I and others have found out. Just don’t give up trying, you will get there in the end!

Sorry op! Us docs are crap at dealing with illnesses which have no known cause , you cant test for and there is no magic bullet to fix it.

If you havent read this it may help

http://www.patient.co.uk/health/Chronic-Fatigue-Syndrome-/-ME.htm

I’m sure you are very good at your job Nick, but if you spoke to my doctor you would understand she doesn’t have a clue about anything, hence why I am changing.

When I spoke to her today about getting tested for Lyme Disease, she told me I had already had a blood test and that nothing showed up. Lucky I did some homework before hand and told her that it wouldn’t show up on a FBC and you have to look for the specific bacteria. She rang me back and agreed! If I hadn’t have known that, I wouldn’t have got a test at all.

Its the human equivalent of taking your car to Kwik Fit, farking useless.

I have read lots about ME/CFS/PVF etc, the problem I have is that my main symptom isn’t fatigue, I’m not really tired at all. I just happen to have most of the other symptoms of PVS or whatever, this is why I’m thinking it could possibly be LD.

Edit:

As you are a doctor, what would you do if a patient came to you complaining of chronic insomnia, aching/cramping muscles and joints, swollen glands, brain fog, muscle twitching, itching under the skin, drenching night sweats (I could go on)

http://www.ukclimbing.com/articles/page.php?id=398

This is a really useful summary of Lymes disease in the UK. The link to the US paper detailing best practice and gold standard tests for Lymes is particularly useful – worth printing out, reading and taking to the GPs.

Problem is you cant test for everything and some things are medically unexplained. Cfs being one of them. You can have a simple serology test for lyme disease btw. Your gp could do all the usual primary care tests and as symptoms ongoing refer you on to a clever hospital doc for further inx and diagnosis. We quite often see patients like yourself with all sorts of symptoms and all tests draw a blank im afraid.

And as for your symptoms id probably run up and down the street outside the surgery ringing a bell shouting ” unclean”. Inx = investigation

Thanks tallie

Nick, are you sure you don’t work at my doctors? 😉

http://www.ukclimbing.com/articles/page.php?id=398

This is a really useful summary of Lymes disease in the UK. The link to the US paper detailing best practice and gold standard tests for Lymes is particularly useful – worth printing out, reading and taking to the GPs.

That’s a really good overview.

If you do undertake a long antibiotic regime, don’t forget to eat a low yeast and sugar diet (ie keep off the alcohol!) and supplement with probiotics to re-colonise your gut.

This is a really important point for anyone taking antibiotics for an extended period. Cut out sugars and yeasts otherwise Candida will strike and that’s hard enough in itself to get on top of. Symptoms are almost as bad as Lyme too. Nasty.

Didnt you see me outside the surgery withith my sandwich board saying the end of the world is nigh on it?!!

Flow

I know we’ve had our differences on here in the past, but if you want to drop me an email at all to discuss this offline, maybe I can help… I’ve been struck by PVF/CFS/ME twice now, having only recently started to make a proper recovery from my 2nd bout. There’s also a couple more guys on here I know that have had it (one I know personally very well), and I know a couple of friends who have had it too.

It’s not all doom and gloom don’t worry, but just because something worked for one person, doesn’t mean it will work for another… Everbody is different, which sadly in this case doesn’t necessarily help!

Anyway, if I can help/advise at all, my email is in my profile…

Thanks Mboy, thats really nice of you mate, especially after all the cyber arguments we’ve had, you just made me smile out loud.

You can never have to many people to talk to, I have already talked my family/friends to death, its all I ever talk about!

Hopefully, in the not to distant future, we will be arguing again and back to normal 😉

There is a new condition that doctors are reporting more and more of called T.A.T.T. (tired all the time). Might be worth looking up.
I had been suffering from similar stuff and have found that wheat literally makes me want to fall asleep. Have cut it out as much as possible but its tricky. Hope you pin it down and start feeling better. Good luck.

PVF is closely linked to M.E. Would be worth looking at the M.E Action website for further advice and guidance. My mum suffers badly from M.E and has been bedridden or about the last 15 years. As for dismissive GP’s refer them to the latest advice from the BMA and suggest they read up on it before you report them.

Having read a lot of the links, I am now extra unsure WTF is wrong with me.

ME/CFS/PVFS etc all have an extreme emphasis on being stupendously tired all the time, this is one thing I am not. I would say I’m no more tired than the average person. Its all so confusing 😥

As you are a doctor, what would you do if a patient came to you complaining of chronic insomnia, aching/cramping muscles and joints, swollen glands, brain fog, muscle twitching, itching under the skin, drenching night sweats (I could go on)

You’ve just described the menopause flow 😉

>Having read a lot of the links, I am now extra unsure WTF is wrong with me

One of the problems of self diagnosis fro the internet, sadly. Not sure many doctors are much better, though

Bunnyhop – you’re right mate, I’d hate to be a woman!

Nbt – self diagnosis is a bit unreliable, but the doctor just looks at me blank and says “well all the tests are fine”

Ahhhhhh I must be making it up then 🙄

Flow – I’m just recovering from PVF / ME and happy to share my thoughts but only in my iPhone at the moment.

I’ve learnt so much about it and I’m happy to share. Turned a massive corner after goggling “ashok Gupta”

Should say that tiredness wasn’t my main symptom, having no energy, insomnia and taking 4-5 days to recover from exercise was the main ones

Hi buckwashed, when you say taking 4-5 days to recover from exercise, do you mean tiredness?

I stupidly did an hour on the turbo trainer last Sunday when I felt alright, up until yesterday my whole body ached but energy was fine.

Bushwacked – just googled and that sounds very interesting. Sounds vaguely similar to something called the Lightning Process which I have heard very good things about (though I am a natural sceptic). I can definitely see the logic behind the theory though – I definitely find it believable that there is a psychological/brain function element to it.

I feel sort of wary of saying that though because some people think it’s just depression, and it’s not.

What’s the difference between tiredness and having no energy BTW?

Right, I’m on a laptop now so I can type, I’m sharing this as I hope I can help people out of the CFS maze…

Flow – When I exercised I found that for 4-5 days I had symptoms which were rooted back in my original virus but I couldn’t sleep easily and didn’t feel tired, more wired. I thought of it like when you have 3-4 hours sleep in a night and feel like poo the next day and sleep doesn’t make you feel better, basically unrefreshing sleep (classic PVF/CFS/ME) symptom). I found on bad days all I could do was get up and spend the day sitting down, in fact on my really bad days I couldn’t even watch TV, it was too much for my system.

Grum – yeah, when I came across it I was looking for info on the Lightning Process and found this. To be honest, I have had a year of some of the darkest times of my life but I have learnt so much that it has been an overly positive time. Difference between tiredness and no energy – can’t sleep but can’t physically or mentally operate either – I used to just sit down all day and mong out.

I’ll give you a little synopsis of where I’ve been to put this in context…

Firstly, I’ll say that I’m not someone that sits back and waits for a doctor to tell me what is wrong and for the magic bullet. Most GPs are in general practice, so are more like jack of all trades, and unfortunately there are few people out there who specialise in ME/CFS/PVF. There are a few but I think that they focus on it from a traditional medicine point of view which perhaps doesn’t help as most people will tell you there are no tests to give a scientific basis to what is happening so know way to determine what is causing it or how to fix it. Now as soon as you say that the medics and scientists will poo-poo anything you say as they believe if it can’t be quantified then it doesn’t exist – well I talk from experience and don’t give a damn as I’m much better and don’t need a scientist to ratify a process when I’ve got quality of life again.

Anyway, I started off back in Oct 2009 with Swine flu, it went after a period of time and I was back on the bike, but nearly everytime I exercised I found I was getting ill (colds, coughs etc), but it would pass and I would be back on the bike, as the year went on I was getting more ill after each ride. then in August I was struck down with a virus, off the bike for 2 weeks, got better then was hit by a virus in Sept, off the bike again but went to GT and rode hard while still feeling like shite. 4 weeks off the bike and then I had to lead a ride round the Qs – never recovered! Its worth mentioning at the time I was getting bugger all sleep at night for about a month due to my youngest waking 3 times a night (on average I’d sleep well for 4 hours before being woken and then get another hour before getting up).

Now I went to the Docs, they told me after numerous blood tests that I was fine and it would pass but I kept on. My GP was sympathetic and eventually told me I had PVF. I carried on, kept researching PVF and how to overcome it, but nothing was forthcoming (and didn’t want to consider it was ME – The lazy stick disease!) I just felt like crap all the time and it didn’t shift, every morning I’d wake up after a bad nights sleep (now due to my condition rather than my kid) and notice I was feeling just as bad as the days before and during the day I carried on.

Eventually in Jan I had a physical breakdown and was unable even to walk 500m to the shops and got very depressed (I wasnt depressed before) All I wanted to do was ride my bike once more and do the things you do, I had no social life, I was parttime at work and wasn’t able to exercise. I had some horrible mental and physical symptoms (Palpatations, chest pains, Skin shivers/tremours, insomnia, food intolerances, unable to concentrate, nasuea, memory problems, lack of energy, sensitive to noise, confusion etc etc etc). Everyday I was so aware of my symptoms it was all I thought about. Just being ill was taking over my life!!

My doctor said I needed to drop work and signed me off for 2 weeks – was a weight off my shoulders as I was really struggling to work even though I work at home and could be flexible. My doctor also told me it was more likely to be CFS with a Viral cause, similar but slightly different she said, but I’m not so sure.

Anyway, this new label gave me something new to research and I wanted to take control and do something to fight back. I started looking into it. I came across Dr Myhill (a controversial GP for what she suggests) and her website gave me a good understanding into why I didn’t have energy and I had this payback. Finally I could understand. I tried out her diet and took some supplements. I started to turn a corner and felt more satisfied about things. I still had some virus like symptoms though.

I went back to the doctor and she signed me off again, in total I ended up off for two months and then returned to work on a parttime basis for about 6 months. (I’m now back full time by the way) My Doctor told me to stay positive and pace myself, easy for her to say!!

I then paid to go to an accupunturist / chinese doctor and a number of the sessions made me feel better and I was able to do more, but soon I’d find I was doing more and got worried about it and then found myself back unable to to anything. it was frustrating.

I then paid to go and see a nutritionist, she was very good and told me to avoid wheat, yeast and importantly sugar. She also suggested some supplements. This changed things greatly and I found I had more constant energy and was able to do a lot more. a light was beginning to form at the end of the tunnel, but Id still find I could sense symptoms and was getting very aware of my limits and would really worry if I overstepped my intangible limits.

I gradually got to a point where I could ride some DJs on my bike, it was great, I could do a set (10secs on my bike) and then walk up to the start (30secs) and rest (1min) then repeat. It was so labourious but SOOOO good that I buzzed off it for days and tried to do it once a week. Gave me a real lift but I found there was some payback which in my eyes was worth it. Gradually I found I was getting more able to do this and work was becoming something I could do. But I could still feel symptoms and was concerned I couldn’t shake things. I’d get a a plateau in my recovery and it wouldn’t budge.

Then I found Dr Teitelbaum’s website and again he gave me some more info which I added into my routine. I found I started to feel better gradually and was more able to do things. But I was still aware of lingering symptoms and I couldn’t ride my bike properly still. Longest I’d been out was 10mins round the block in one go. I also found that stress and doing things outside my comfort zone would really make things worse, so I became housebound and lost a lot of contact with the outside world (thank god for facebook!!) What was the key to unlock the door??

About mid July I was getting frustrated I had made so much progress but I still wasn’t right, I could still feel symptoms and was very aware of not over doing it and pushing it. Then end of July I went to a party for a mates 40th. I got chatting to mate about my condition and he said a mutual friend had had that. This was someone who was a seriously positive highflyer in the city. He’d been doing Ironman’s and it was a shock to hear that he had CFS for 3 years, but more interesting was that he had recovered in jan and had just done his first ironman since recovering. This felt like someone had given me all my Christmas’s at once! I had started to feel I’d never ride my bike again and that I would struggle with this for the rest of my life. I made it my mission to find out what he had done to recover.

I dropped him a line by email and he replied about a week later. Bascially he said he’d done the lightining process and dramatically started recovering after the second day of the 3 day course. He said it was all uphill after that with a few dips by went from strength to strength.

My intial thought was “how did he recover in 2 days after 3 years of being ill??? Surely his body was knackered and it would take longer but why the sudden swtich???” It must be something that can switch like that, but what???

So now I had to research the lighting process, something my mother in law had mentioned about 6 months eariler but I had rubbished as this wasn’t in my mind it was my body which was knackered. But if my mate has recovered so dramtically then it must have worked.

Its interesting as it costs £1000 and you have to sign an NDA. My thoughts are if you can’t talk about it, don’t find out about it until you’ve handed your money over then something is fishy. I trawled the internet to find out more. I came across only two references to what happens and pieced enough together to see that this teaches to you retrain your mind.

The theory is that part of your brain (The reptile bit which does the fight or flight) has had its programming corrupted and as a result any “threat” fires off chemicals in your body. These threats could be anything you could be concerned with. For me it was; symptoms; sleeping; socialising, drinking alcohol (I’d been tee-total for 3 months), eating the wrong thing, over doing it, exercising, any funny feeling in my body, stress at work, stress at home… etc etc etc.

I looked into the effects of those stress chemicals on the body (cortisol and adrenaline mainly), the symptoms of too much on the body read like a list of my symptoms (physical and mental).

Finally an explanation on what was happening, my mind was knackering my body. I wasn’t mentally ill but my subconcious mind was causing the problems because my conscious mind so wanted to be well.

I was not going to pay £1000 to do it. Luckily I randomly found Ashok Gupta’s process which cost a lot less (Bought it after my holiday and have watched some of it and flicked through the book but haven’t gone all religious about his process). checked out his online free videos and it made a hell of a lot of sense and explained why pacing is so important – gradually learning and convincing your body that you can do more – but why can’t you take a bit leap I asked myself? IT suddenly explained why my mate made a massive leap forward in 2 days.

At this point I had been ill for 10 months and I had a week before a 2 week holiday in Turkey – a big personal challenge!! I started not focusing on my symptoms and being chilled towards everything. I tried not to overdo it and gradually did what I could do and a bit more. Pacing but without the worry over the symptoms or anything else in fact. I gradually found that I could do more. I then went on holiday and the first two days knocked me on my ass, mainly because it was between 40-45 degs most days and the heat was too much, but once I aclimatised I found I could swim and play with the kids most days. I had a few relapses but I was doing more. By the end of the holiday I managed to walk in the midday heat round a ruined city and then spend the afternoon playing in some seriously big waves before going out for dinner. Had I turned a corner?? I was sceptical. I was going to wait until I returned to england and see if the heat and holiday had changed things.

When I got back to the UK I realised that I still wasn’t right but I was much better. The first week was mental at work, a big conference with me away from home for 3 days – another big step for me personally. I was a little anxious but I’ve come away thinking wow I did loads more than I expected.

That Friday I got home early and decided I felt good enough to ride my bike. Took my Bfe out. Gently rode it to the hill, walked 300m up the steepest part before riding up the rest (2km). As I got to the top after 30mins of climbing I had a moment as I realised where I had been, how far I’d come and how much better I was. It was such a revelation to ride my bike again I was amazed. I rode back down on top of the world.

After that ride I fully expected to have some payback of a serious nature (Busy week at work and riding my bike!!) I was a bit tired the next day but felt good!! Wow! I’d turned a corner…

That was three and a half weeks ago and now I can say that I’m 90-95%, Ive had a few dips but nothing major. I’ve even managed some really challenging schedules at work and home with no major side effects. It has been a tough ride so far and I’m not out of the woods so far (although riding in the woods is where I like to be these days). Its going to take a good few more months to completely retrain my mind to think the right way again but its becoming more automatic.

This is my experiences, there is a lot more too it but this as I said is just a synopsis. Any Q’s drop me a line barnt at hotmail dot com

P.S. The FOD blue trail is awesome!!!

@ flow

Sorry, I haven’t read every post. This may help, for some of your stuff sounds familiar…

Lyme Disease – everything you wanted to know (and stuff you wish you didn’t)