After 5 months of feeling unwell and countless trips to the docs for blood tests, my GP as suggested CFS as the cause of the problem. Pretty active upto early August and it was quickly all down hill from then. Some days I can walk the dogs for an hour, other days I can’t do 400 meters. Understand there’s no “quick fix” and it will take time to resolve, so I’m resigned to keep the bikes hung up and I’ll dust them off in the spring.
Anyone else been diagnosed with this?

Yeah, every time the wife asks me to go Xmas shopping

(Sorry)

Hey Ben – I bought your tandem cos my missus has this and the tandem helps us when she’s suffering. It can be managed with care and as long as you’re on top of it then you can live a more or less normal life, the hard part is getting back to the right level. Once yo;re up there it’s ok as long as you don’t reach tipping point – once you cross the line you can go back down very quickly. There have been threads about this, look for Bunnyhop (my wife) and Cinnamon Girl for examples. Will post links up laterwhen i have time, feel free to drop me a mail

Daisy_Duke – check your inbox in a bit. 🙂

nbt – thanks for the mention. 🙂

http://singletrackworld.com/forum/topic/pvfscfsme-people-update

http://singletrackworld.com/forum/topic/chronic-fatigue-syndrome-what-do-you-know-help-please

http://singletrackworld.com/forum/topic/stw-medical-staff-running-with-cold-query

http://singletrackworld.com/forum/topic/long-term-sick-cfs-and-fibromyalgia

Also, Grum and Bushwhacked have both suffered and come to terms with it

and others…

Both my sisters had/have it. One more or less full recovery over time the other a lot better but still has to be careful not to push it too much.

Obviously everyone’s case is individual but they found the UK winter really made them worse so went to Portugal for some winter sun, helped so much they both now live there permanently.

Daisy Duke – sorry to hear this.
Yes it’s a horrible illness and not one that a lot of doctors except.

There are quite a few of us on STW who had a thread running constantly. The encouragement we got and gave to others was a real help.

I find I suffer more in the colder months (mentioned above), as I lose energy quickly. Calories are a unit of energy to provide heat and if I don’t eat enough and get cold then the symptoms appear again.
These are feeling a bit sick. Unable to do certain things as my legs feel like lead and just not be able to carry out normal everyday things. Something such as washing up, felt like I had to climb a mountain.

It’s hard to know what to say, other than take each day as it comes and rely on relatives and friends to help you as much as possible.

Please don’t give up on the bikes. I found I needed a goal. This goal was to ride in an event called ‘Hit the North’, which was run by Terrahawk and Harry the spider from this forum. They’ll never know how much they helped me.

If you would like some more info please e-mail.

All the best

I’ve had lots of health problems over the last 10 or 12 years

Lots of hospital appointments, specialists, scans etc

eventually about 2 years ago went to a private clininc and got diagnosed with Lyme

However, NHS are refusing to believe this and they say I have CFS

I have ups and downs, never feel well as such, just usually different levels of crappy

Personally I am still not sure what it is, I’ve had some treatment for Lyme, I think it helped a bit, now unsure what to do re treatments and where to go next

Thanks all. There is some interesting reading for sure. I’ve always liked more more “enduranced” based events, whether that be 24hour TT’s, or mtb rides. I had a good start to the year but when my body didn’t recover from weekly TT’s, I thought a couple of weeks enforced rest would be the ticket. Instead of feeling better I got weaker. I’m keeping it all in perspective though. I’m lucky as I don’t suffer from depression and have a good job, so I can’t complain. It just feels odd not riding in the evenings and weekends and I miss the social side to.
Thanks again.

Me too. Same symptoms and my doctor very quickly suggested that they were concurrent with CFS, and that I should address this as per CFS. I don’t know a great deal about the subject, but this is my experience:

I was down to about a 200m flat walk, then that’s it – utterly done. And a really deep ache/pain – often in muscles that you haven’t used. So arms/back etc when all you have done is walk for a five minutes.

As instructed by my doctor, I undertook graded activity. So walk 5mins one day, then a bit more the day after etc. Learn where the tipping point is, what it feels like, what are the symptoms at the time of exercise that result in you being done in after etc. Then you can carefully go to that point, then back off. Some days you will do nothing, but be diligent about the careful grading. No rushing it. There will be setbacks. But I was lucky and saw improvements in walks, that eventually led to getting back on my bike on the flat, then gentle hills, then eventually off-road, then finally back to able to do a reasonable ride off-road. Took about 18 months to that point then another 1/2 year at least to start to feel quick-ish again.

There were some set-backs where I’d over-do it and lose a few weeks of gain in one go. But it was about learning the tipping points including understanding the overload from other aspects of life and how that can affect physical performance.

Now I still need to be careful, but on a good day, I can give it the beans and race xc/endurance. I’m grateful that I’ve got back to this point and knowing what it is like not to have it, I don’t want to waste it, whilst being mindful of overload/tipping point symptoms.

Good luck.

I have huge sympathy for anyone who has a condition that stops them from living their life the way they want to. A friend of mine has been battling this for some time, and in his case it seems the less he does the worse he gets

Hope you overcome this quickly, whatever it takes, stay mentally strong, don’t let it get the better of you.

jools182 – there are folk on this Forum who’ve experienced/are experiencing Lyme so would definitely be worthwhile starting a new thread on Lyme.

You have to ask yourself why the NHS are so keen to keep to their diagnosis?

Read as much as you can and take care of yourself.

All this sounds so familiar. Took ill, remained ill. Exercise made it worse. The feeling of an underlying virus all the time. Exhausted.

During that time I visited the doctor a lot. A lot. It went from “there’s a lot of viruses around” to blood tests to eventually “you’ve got post viral fatigue” which essentially amounted to CFS… And modern science lost interest.

I tried many “fixes”. Cognitive Therapy (helped some issues but not necessarily related!), Reverse Therapy (expensive & not a lot more), homeopathy (some effect but then stalled). I was starting to despair when my mum & Dad saw an article in the Daily Hate Mail….

It said “could this gentle massage be the cure to M.E.?”. It referred to something called Perrin Technique which is a type of lymphatic massage. I read a book about it & this ticked off many similarities to my own situation. So I went for treatment.

All I can say is wow. The first treatment laid me low for many days, worst symptoms I’d probably ever had. 2nd treatment a week later, much the same. But slowly after each session I felt better. Each session got futher & further apart. I started to feel like I’d got more energy. And eventually I was able to ride. Then lots. Then did Ride London 100, which from where I’d come from, felt a final confirmation I was better.

I still go for occasional treatment (or maintenance) & my immune system is still quite susceptible to virus, but this treatment helped me. I can’t say it’ll help everyone, I can’t say for sure I’d have not gotten better anyway, but the effect after the first few sessions convinced me that there was something good going on.

I hope that gives some help or hope. As I say, this treatment may not be for everyone – so I’m not necessarily recommending it to you – but do your research, keep an open mind & try things to get you back to strength.

arewethereyet – Do you remember having a virus? I’m trying to work out how the Perrin Technique differs from Manual Lymphatic Drainage that’s often used for cancer patients.

It’s great that you’ve experienced a huge improvement and long may it continue.

My brother has cfs it’s totally ruining his life/family life but he’s getting there…

Can’t work anymore some days he can’t even lift a cup…

He also has treatment from Dr Perrin he travels to Manchester to see him

http://www.theperrinclinic.com

Hope all works out it can be a long journey to recovery

Nbt linked to a thread I made up there – suffered quite badly for a few years but mostly ok these days. All got tied up with depression for me though.

Good luck with it.

There was something on TV in Aus the other night about Lyme disease – it’s not really recognised here apparently. Anyway this woman was really ill and then got better through heat treatment.

Linky

Cinnamon Girl. In simplest terms, yes, I had a virus which was pretty bad. But actually, I kind of think the virus was merely the straw which broke the camels back. Stress, sleep, diet, posture, everything else of life until the body said enough.

Incidentally, my Perrin person is in Bedford, trained by Perrin in Manchester. There are a few practitioners about the country but not many IF you consider that treatment. And good luck!

Partly posting here as a book mark

My daughter is suffering very badly with this at the moment. 2 years on and she doesn’t really attend school. Making do with a few hours of 1 to 1 per week

She is being treated by Great Ormond Street who are great

arewethereyet – thanks for explaining and can understand the body basically putting its foot down.

I had a course of manual lymphatic drainage to treat swelling on most of my body due to a thyroid condition. It made a huge difference and something I would have done again if I could afford it.

ampthill – your poor daughter, how miserable it must be for her. 🙁

grum – Member
Nbt linked to a thread I made up there – suffered quite badly for a few years but mostly ok these days. All got tied up with depression for me though.

Sorry Grum I didn’t see your post from a couple of months ago. I think we were away with no internet.

In my case I had to treat my energy as a bank. I had to decide where it was going to be used up and how. E.g. I’m self employed so most days that took up all my energy, leaving nothing for doing anything else. At weekends I was able to go for short walks and a bit of house work. The res tof the time was just spent doing absolutely nothing.

I have still got problems with my immune system, which is low. Apart from that I’m fine.

The thing to watch out for is getting depressed. It can grind you down and that’s where you need support.
Get out your favourite films. take up an easy hobby. I found even watching telly would wear me out if it was for over an hour. Pace your self in everything you do.
I believe time is the healer but am happy to see that other people have tried things and they’ve worked for them.

amphill – I hope you are getting support. My niece was diagnosed when she was 8 and now she has fully recovered in her early 20’s and getting on with life fully. All the best, it must be heart breaking for you.

Mayby it is your fear of fatigue that maintains it?

As it is a symptom of stress – how much of your time do you spend reading about it, visiting doctors about it, consciously thinking about it and trying to stop it? What you are doing is stressing you, and one symptom you are getting is fatigue.

If you have seen a Dr and he can’t find anything – Give yourself a break, let the fatigue be there and dont consciously do anything to try and get rid of. Trust your body/mind to heal itself.

When I had anxiety disorder I was always fatigued – always tired. It took a while but now its all gone.

Xcracer talks a lot of sense.

I disagree. 😐

I disagree

+1

I’ve seen a couple of people I know get completely floored by CFS type conditions. There is “feeling a bit tired / lethargic” and there is being completely knocked out of the game. I don’t think anyone fully understands what’s going on, but for many people it’s debilitating and certainly not brought on by anxiety, mild stress or anything of the sort.

different things work for different people remember – there isn’t a “one size fits all” cure for this kind of thing, it very much depends on how the illness affects *you* and how *you* respond to different ideas.

Try eating a little seaweed (dried) every day, iodine deficiency could be a contributing factor. If you avoid or have eliminated certain food groups from your diet (e.g. fish/dairy) then you could easily be deficient.

different things work for different people remember – there isn’t a “one size fits all” cure for this kind of thing, it very much depends on how the illness affects *you* and how *you* respond to different ideas.

Bingo! Important to remember this I think.

+1

I’ve seen a couple of people I know get completely floored by CFS type conditions. There is “feeling a bit tired / lethargic” and there is being completely knocked out of the game. I don’t think anyone fully understands what’s going on, but for many people it’s debilitating and certainly not brought on by anxiety, mild stress or anything of the sort.

I don’t think anyone is saying that the condition isn’t real and debilitating, it’s just that sometimes you have to step away from the interweb and focus your mind on other things than the condition.
Meditation / mindfulness can help with dealing with some OCD aspects of conditions of this type; associated anxiety / stress is very real and needs to be carefully managed.

Yeah that’s true, the folk I know who’ve suffered from this benefited a lot from meditation and things like that as besides the physical limitations the condition also severely affected their ability to focus, mental well being and generally happiness. It stands to reason that if someone goes from being able to ride 100 miles in a fast time to not being able to walk the length of themselves there will be a impact on all aspects of their health.

The only thing I will add is that if you have been suffering for a while, and your doctor has checked you out; and I imagine you have been to the doctor a lot??, then mayby you are doing something to make you feel this way?

Mayby the belief that something is wrong with me, and your constant search is what makes you feel this way?

I totally agree about the symptoms being pretty awful and real, totally agree with this.

Have a look at people who have suffered and recovered, google for Loz Evans say.

Mayby the belief that something is wrong with me, and your constant search is what makes you feel this way?

+1

I would recommend checking out these links, in particular Dr Myhill who is experienced in CFS and her comments on mitochondria:

http://www.drmyhill.co.uk/

In addition this British dentist:

http://www.mouthbodydoctor.com/

This is her book which covers fatigue, also available as an e-book. Definitely worth reading:

http://www.mouthbodydoctor.com/book/

Whilst I don’t have CFS there is some common ground with thyroid conditions (which I have). What made the biggest difference to my health was paying attention to toxins and thus had a mouthful of amalgams removed by a specialist dentist. It took six months and the (thyroid-related) brain fog that had plagued me for years actually lifted a couple of months afterwards.

Read as much as you can as, after all, the person with the most motivation to recover your health is yourself and nobody else.

As much as I would like to comment on the negative and frankly useless comments that have been made, I won’t. Instead: just be glad it’s not you.

As much as I would like to comment on the negative and frankly useless comments that have been made, I won’t. Instead: just be glad it’s not you.

People not agreeing with you doesn’t make them wrong. You have had one set of experiences, others have had their health and lives impacted in other ways. We all need to do what works for us. Also, whilst your illness is obviously serious, there are others who are dealing with equally or more serious conditions – they just don’t bang on about it (and the associated injustices) as much.

My comments are definitely not aimed to be negative, I’m trying to get you to think about it in a different way. Just mayby there isnt a deep seated, unknown cause to be searching for?

Ive been in the back of an ambulance a few times due to the symptoms i had, could bearly leave the house, felt on edge 24/7, had obsessions, breathing problems, lots of palpitations, insomnia, constant negative thoughts, felt in a fog/spacey all the time, headaches, to name a few.

Best advise I can give is take advise from someone who has suffered and recovered.

If you feel the need to continue searching for whats wrong at least say if you still havent gotten rid of it in 3 / 6 months to give this option a try?

If you dont agree with what I’m saying then that is ok and I wish you well, I know its not a nice place to be in.

I have a diagnosis of CFS/ME. After doing research for myself I sought private treatment from a Lyme Disease specialist, for the symptoms overlap and I had the relevant lifestyle history. Details are here, as of about ’06…

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

I’m now lots better thanks to long-term doxycycline. The GMC turned nasty against those few Docs willing to treat long-term, I’m not sure how people currently get themselves treated. Some of the linkys above may still work, and there’s a support group on FB.

YMMV.

Cinnamongirl

I’ve lost count of how many people have said to me ‘try not to think about it’ and other such helpful tips

It wouldn’t be said to someone with MS or another illness

Also, whilst your illness is obviously serious, there are others who are dealing with equally or more serious conditions – they just don’t bang on about it (and the associated injustices) as much.

geoffj – you are indeed correct that there will always be someone worse off than you in this world when you are il.

There are ill people who don’t mind being ill, they revel in the fact they are looked after and get attention. I’m guessing these are not outdoor people that enjoy many hobbies and activities that we all do.
So when we (meaning stwers) get ill it can be devastating in some cases ending in major depression. So I think your comments pointed at c_g were a little harsh imo.
I agree that stress could be the cause of cfs but I also think it is stress from the body and not just the mind.
When my cfs came along, I had pushed my body to it’s limits in a few ways and I think, it said, o.k. time to shut down.

We are not here to argue, we’re here to help Daisy_Duke.

‘try not to think about it’

As in when you’ve had a short ride, or perhaps a walk, and the next day your brain shuts down with a headache of migraine-like intensity. You can barely mumble, ISTR, let alone string together a coherent thought. Your day is spent hiding under a duvet with the curtains shut.

IME this was not a helpful comment.

There are ill people who don’t mind being ill, they revel in the fact they are looked after and get attention.

Really? I mean, really? We’re not talking about a duvet day with a cold or even flu here are we?

I’ve lost count of how many people have said to me ‘try not to think about it’ and other such helpful tips.
It wouldn’t be said to someone with MS or another illness

Actually, mindfulness / meditation and living for the moment, are key elements in the way some people help manage their MS.