UKC

I was just wondering if anybody had any experience of climbing with Chronic Fatigue Syndrome or any similar illness that severely affects energy levels?

I'd only been climbing seven months when I became ill so I was still in the fairly enjoyable phase of learning lots about climbing and seeing improvements whenever I went. But since being ill I seem to have hit a reverse trend and can barely maintain the same level of climbing. Sometimes I find that I can go climbing and have nearly the same energy levels and enjoy a really good session. Then other times I climb I can barely get myself up the easiest grade at a wall. This doesn't have huge repercussions (except frustration) if I'm climbing indoors but thinking about spring and getting out to lead some trad feels fairly intimidating. I don't feel I'll have had the training and fitness built up enough to have confidence on even very easy grades. Especially since I find I often have no energy reserves to draw from if I'm struggling with a route.

Another enjoyable aspect of climbing is the mental challenge of figuring out sequences of moves or making sensible choices for gear placements. As mental fatigure is part of CFS I find myself struggling to work how to approach problems and again I'm worried how this will translate when I'm back out on some real rock.

Most people who don't climb can't understand why I don't just stop doing it (and all other aspects of mountaineering too) since any exertion leaves me feeling ill the next day but as far as I'm concerned giving up something I love isn't really an option. Has anybody else been in this situation? How have you dealt with it and how has it affected your climbing? It would be great to hear from other people in the same boat.

In reply to Juniper: I suppose all I can offer is that you shouldn't need too much strength to climb some of the more slabby easy climbs. I am not really that fussed about climbing indoors so come spring will no doubt to totally unfit, but the art of climbing is all about using the least amount of energy as possible. Think about using your feet / legs more and focus on not holding on to tightly. If you are concerned about strength then choose your climbs carefully. Don't just go on what the guide says, look at the route and see what you think. Slabby routes require less sustained strength than walls and cracks. There are a lot of very unfit climbers out there who get out and enjoy themselves so just go for it and don't worry too much.

In reply to Juniper: Matt Birch seems to do ok- mebe he could be a source of inspiration ?

In reply to Juniper: If you must go out then I'd suggest roadside, single pitch, easy routes at friendly venues (i.e. good rock, sheltered, safe, nice place to hang out... ie. Stanage rather than Gogarth), on nice warm sunny days. Rest a lot between routes, eat plenty, stay warm, and don't be too proud to mostly second or top rope if necessary. And really, don't push yourself or you may radically worsen your situation. I have no personal experience of this condition (thankfully) but I'm close to several people who have and even after several years of slow steady recovery most of them would think twice about going out for a spot of light cragging. It's a really awful thing to have, not least as it's so widely misunderstood. I wish you all the best, but do be cautious.

In reply to lummox:

http://www.ukclimbing.com/news/item.php?id=42747

Quite. See bottom para.

In reply to Juniper:

HI,

My father has had CFS since I can remember.

My advice would be to do routes that are less commiting. I'm sure you already know how quickly it can strike, especially when you least expect it. I think it would be wise to always know that you can get back down.

My Dad used to do loads of outdoors stuff (camping, climbing, canoeing and running Training for kids in the outdoors) However, he's had to give that up - especially being responsible for other peoples kids. However, he loves photography and has taken it up seriously as an alternative. He still gets out just not as far and is aware of his limitations.

I admire you so much for sticking with climbing through this and wish you all the best with it!

Good luck,

Oli

In reply to Juniper:

Yup - I have the same problem. And like you, have no answers. Some days I can climb easily, other days just tying in can leave me feeling tired. All I can offer by way of advice is to take each day as it comes. If you get to the crag and feel awful, just take it easy and enjoy the scenery rather than pushing for the sake of it. Easy to say here, but astonishingly frustrating when you've waited all year for a particular climb and are unable to make the first moves. At times like this I just count myself lucky that I'm able to get out and at least be there. There are plenty of cases of CFS where even getting out of the house is impossible.

Pragmatically, things like eating well and staying well hydrated are the obvious ones. For me, regular light exercise (walking mainly) helps a lot, as long as I keep at it. If I stop for a few days, my energy levels drop quickly and it's difficult to get going again. Strenuous exercise just leaves me completely wasted, and prone to picking up all sorts of bugs & lurgee that my children thoughtfully bring home from school for me.

Finally, an understanding partner is a must. It's equally frustrating for my partner when we have to back off a climb that he's been looking forward to as much as me.

Good luck with it.

In reply to lummox:

He definitely is. We're both from Otley as well so I feel we have a lot in common, even if it's not our climbing ability!!!

In reply to Juniper:

Thank you everyone for your advice. I think being selective about the type of routes I can climb will help and I certainly think I'll be doing more seconding than leading this summer. At least the people I climb with will have a belayer on tap so I doubt they'll be complaining!

I suppose patience is really what's required here so maybe learning that will be my first goal to dealing with this situation better. On the plus side my climbing photography may dramatically improve since I'm still bound to be found loitering around crags.

In reply to Juniper: I had CFS for about 3 years (2004 - 2007) and kept as active as I could during that time. I used to get bad vertigo and could only manage to climb for shorter sessions than normal. I just scaled down my ambitions, stopped leading, bouldered more and dropped winter climbing.

I knew that every session at the crag would leave me wasted for the next day or two, but I had to go just to stop myself from going insane.

I found that I could operate at a fairly high bouldering standard - I had a very good diet and wasn't drinking, so had lost weight. Food was an important factor in how I managed my crag visits; if I kept munching apples or oat bars I found I could keep myslef on a fairly even keel.

I tried everything I could to get better, and in the end found my solution with reverse therapy. These days I get the odd minor twinge of my old symptoms, but I consider myself fully cured. I even got back into winter climbing last season and have gone for it even more this year.

I'd say keep climbing as much as you can cope with, but more importantly keep experimenting with different cures.

In reply to Juniper:

Might be worth emailing Kafoozalem, he posts on hear faily often and suffered from CFS/ME for a long time, before making a very rapid recovery. I hope he won't mind me posting this and I'm sure he'd be happy to share his experience/advice.

http://www.ukclimbing.com/forums/profile.php?id=32683

In reply to Juniper:
It is worth looking into the Lightning Process which has had some amazing results with chronic ME and CFS sufferers.
http://www.lightningprocess.com/what-is-it.aspx

In reply to Juniper:

I had Glandular Fever a couple of years ago and still suffer from problems with energy levels. I realise that CFS can be harder to deal with than GF but there is some crossover between the two.

I'd agree with all of the above and find that what I eat and the amount of water I drink has a massive effect on my energy levels. Really obvious things like good quality sleep too.

You could also try and keep a diary of food, sleep etc. and try and look for patterns against energy lows.

I have heard good things about The Lightning Process but never tried it. I had a session of Theta Healing last year which really got me out of a long period of low energy. It also helped me to listen to my body a lot more which has helped.

Good luck with it all.

In reply to The Climbing Academy:

I second that - my wife had ME/CFS for 18 years and my daughter for 7, both completely fixed after doing the Lightning Process nearly 4 years ago.

In reply to Michael Hood: Having said earlier that I tried everything, I didn't try the Lightning Process. I had read that it worked better with younger people, but glad to hear that it sorted your wife's CFS out too.

Maybe it would have been quicker than the reverse therapy that I followed, which although very effective did take a month or so to really kick in.

In reply to Juniper: I was diagnosed with post-viral fatigue just before xmas, following a virus I suffered from last September. I stopped training mid-December as my state continued to deteriorate, both physically and mentally.

I went on a detox at the beginning of this year - no alcohol, caffeine, cigs, sugar, meat and wheat and within a couple of weeks began to feel some improvements. I felt strong enough to give the wall a visit and managed quite a few problems that I'd done before my lay-off. I was still a couple of grades off my best, but then that was to be expected. I felt fine the following day, but the next day my symptoms began to reappear: sore throat, blurred vision, headache, shoulder and neck pain, tight chest, anxiety, not to mention the tiredness.

I'm slowly starting to regain some strength as the symptoms subside. I guess it's going to require some patience and when I feel strong enough I will try climbing again. It's encouraging to hear from people who have made a full recovery, and I'll check out some of the techniques that have been mentioned on here.

Good luck with your recovery, and stay positive!

Gav

In reply to Simon Panton: Hi Simon, What exactly is reverse therapy?

In reply to Juniper:
I was laid low with pretty nasty CFS a few years back (2001 - 2004) and it resulted in me having a few years off climbing (and pretty much everything else for that matter!). However, the thing that I found worked really well for me was a pretty careful graded exercise programme, where I just gradually built up things over a long period of time - started walking for one minute a day for a week or two, then increased it to two minutes a day the following week and so on, right up to being able to run 10K no problem. And once my general fitness got better, I started to feel better and got back in to climbing (and at a much harder grade due to the weight I had lost!)
This did, however, take a long time (over a year) and and a lot of self-control not to overdo it. Even now, on the days when I feel well, I don't exert myself. I find that if I do, then I'll be laid low for weeks as a result.
And like a few other posts have said, you may just have to change your climbing outlook a bit. I don't do as much stamina-type climbing as I used to (because I can't climb enought to get fit without feeling ill!), and do more bouldering instead (because it doesn't seem to be so tiring).
Having said all that, the main thing is to just enjoy being out climbing, in nice places, with a few mates, having a laugh. I ceratinly appreciate just being able to get outdoors and climb now, whereas before I did used to take it a bit for granted.
Good luck with it and hope you get better soon.

In reply to Gavin McGrath: Hopefully your post-viral fatigue hasn't become chronic - the sooner you catch it the better.

I can't explain reverse therapy but I can explain the Lightning Process - I believe that Reverse Therapy and Cognitive Behaviour Therapy and maybe other treatments/therapies are in the same sort of mind/body interaction area.

Lightning Process believes as follows - it reckons that CFS/ME is due to overproduction of adrenaline and that all the symptoms are a follow on from this - I'll explain how it reckons things work below - but first a personal comment. I'm not sure that I agree with LP's adrenaline premise but I reckon they're in the right ball-park and I've seen quite a lot of people get dramatically better - not just my wife and daughter, others too. Ultimately I don't care whether they're correct - from a pragmatic viewpoint IT WORKED - and that's good enough for me.

LP reckons that at some stage you were ill/recovering (virus) or stressed (maybe tragic life event) or whatever. Anyway, you pushed yourself to do things and get through that time by producing adrenaline. The other consequence is that your mental "pushing" created a new mental pathway in your brain. Each time you think that "pushing" to make sure things are still done, you reinforce the mental pathway but associated with that pathway is the production of adrenaline. Essentially you're pushing too much before allowing your body to fully recover. Eventually you get into a spiral/cycle of thinking that way and producing too much adrenaline. Now you've got CFS/ME with some or all of its various sypmtoms.

LP works by teaching you to identify those neural pathways and stop using them. That is you identify the thinking patterns that are producing the adrenaline and then use various techniques to break out of that thought pattern. This stops the over-production of adrenaline and breaks the cycle allowing recovery.

One final thing - CFS/ME is not a psychological condition - it's neurological with real physical/chemical/hormone effects - I'm glad to see there haven't been any ignorant comments from UKC belittling this debilitating illness.

In reply to Gavin McGrath:

See the following links for explanations:

http://www.telegraph.co.uk/health/alternativemedicine/3322604/More-talk-mor...

http://www.reverse-therapy.com/Reverse_Therapy/

http://www.mickeltherapy.com/information.html

They are both variations on a theme following similar principles. There does appear to be some crossover with LP.

There used to be a really good forum called curecfs.com which was very pro - reverse therapy (sadly it is no longer online). When I discovered it I sat and read every single post (took me 3 days because I was pretty ill at the time) and then suitably inspired went straight into doing reverse therapy. (I also read about the Olympic canoeist mentioned in the Telegraph article above, which was another source of inspiration.)

I saw a therapist twice (£60 for each meeting); on the second meeting she told me to not contact her again unless I had any major problems, i.e. that she felt that I had grasped the main principles and that I would be okay as long as I continued to apply the RT methods. She was right, my symptoms became less and less powerful with every passing week. It wasn't all plain sailing, and there were some pretty difficult aspects to the treatment, but I have no qualms at all about recommending it to anybody suffering from CFS or similar conditions/illnesses. It worked for me, it might work for you.

In reply to Juniper:
I got used to taking cat-naps at the crag and accepting some days were a waste of time, as well as never exercising 2 days in a row.
It went away after a number of years. My only cure was rest and healthy exercise - as possible on a given day. And patience.
Over the course of the condition I went up a few grades so it didn't preclude climbing well, just made it more erratic and requiring much more rest. I've also climbed very well when feeling quite dopey/groggy, so you can't always tell (mind you I felt dopey A LOT of the time I had M.E.). I'd advise sticking to safe routes or sport climbs if you don't feel too sharp though. As climbing does not require lightning-quick reaction or co-ordination but strength and good propioception, you might be pleasantly surprised. Just don't be too upset if some days are poor - you'll be even more chuffed with the good ones!
All the best
Jon

In reply to Juniper: Hi. It took me 2 years to go from physically unable to climb stairs at low points in the day to being more or less 'me' after taking a big hit from proper bad flu and enduring the tedium of CFS/PVCS diagnoses.

Without going into any tedious detail, 4 key factors:

Diet - quality only. Forget processed sh*te or anything but genuine proper stuff.

Hydration. Keep water to hand all the time and drink very often. Most people drink way too little most of the day.

+ve attitude. Forget frustration and gloominess, it's just a matter of finding tricks to manage the temporary current state of affairs and ensure it's a realistically paced upward trend.

Finally - most relevantly: do as much as you possible can, just at the limit of what you can do. The aim is to push the limit in a generally upward trend (accepting that day to day it wil go up AND down). So climb as much as you keep enjoying. You'll have to brush against the boundary of 'what's enough today' to ensure you know where the boundary is (so you can avoid over doing it) and make sure you slowly nudge it up. The crucial aspects are building awareness of what your limits are and making full use of what's available. And at the moment that means being utterly realistic and working with what's available. So are there folk around who'd be up for gentle low grade 'classics' but have the nouse to take over should flagging oomph require it? Maybe there are gnarly old timers in a local club who'd be very happy and trustworthy companions but who's hard route / fast days are long past?

Limits - push it too early at your peril, but see the funny side! An early foray back onto the rock had me setting off trying to solo a route I've previously soloed without using hands at all. Luckily someone with a rope was within hailing distance at the midway point when i realised that even this ultra modest challenge was beyond me at that point .... ooops! The shame...

Oh yes - key factor five. Sense of humour (at times, black). Definitely helps.

In reply to Michael Hood:
if it does not have a psycholgical aspect.how come that in my area the nhs service is part of mental health and the team includes a psychiatrist.

In reply to steve webster:

Firstly I think that western medecine has historically gone down a route of "either it's physical or it's mental". This artificial divide may be closing as medicine/science develops but we've still got the historical baggage - e.g. the taboo about admitting to having mental conditions (you see I'm at it myself). I don't believe that this artificial divide exists in us, our minds & bodies are integrated.

Secondly, I believe that CFS/ME is one of those conditions that spans the mind & body. When CFS/ME was less well recognised about 20 years ago, there were attempts to try and pigeonhole it as a psychological illness with many psychologists insisting that they could cure it by psyhological treatment.

This led to the time when CFS/ME earned the "yuppy flu" moniker and lots of "just pull yourself together" and "but you look alright" type comments (both to people personally and in the press). The people who I've met who've had (or have) CFS/ME have tended to be busy, full-on kind of people who are always doing things and trying to get more done, the people who go back to work before they've fully recovered from an illness, etc (i.e. the kind of people who don't seem to understand the word "relax"). I suspect that relatively lazy people like myself are very unlikely to get CFS/ME.

Back to your original question. Because of the body/mind divide in the NHS we have mental health services being somewhat separated from the rest of medicine. I believe that CFS/ME has sometimes been placed in that area (even though the WHO classifies CFS/ME as neurological) because of the need to place it somewhere and the history of how CFS/ME was perceived (as detailed above).

From a pragmatic point of view, pyschologists may well be the best people in the NHS to help with the various techniques and coping strategies that can help with CFS/ME. My family didn't have much contact with psychologists during their illness so I can't comment on this from experience.

Also, CFS/ME can have psychological "complications" - especially depression (which thankfully my family didn't get) - which isn't suprising if you've gone from being fully active to incapacitated with no end in sight and no clear answers. There's no doubt that pyschologists would help in those areas.

Sorry for the long lecture, with this subject I find it difficult to stop once I get started

In reply to Michael Hood:
therefore as the local cfs team are part of liason psychaitry which is based in the local acute trusts hospital and do all their work in there.would indicate that there is not the quite the seperation between mental health and the rest of medicine you belive exsists.

In reply to Juniper:

As mentioned previously, Matt Birch. Also, take a look at what Shawn Diamond from L.A has achieved, I believe he has Crohn's Disease and has had a lot of operations for the chronic illness.

J

In reply to steve webster: That may well be so, I certainly hope so. As I said above a lot of it is historical baggage where mental problems were hidden away and taboo.

Although I can see some rational for keeping secure units separate, wouldn't it be nice if those were the only exception and all non-secure mental health needs were within primary care and our normal acute hospitals. I wonder whether contries in the east (that have not been westernised) have separate mental hospitals.

In reply to Juniper:

I was diagnosed with ME in 2003 although I've had it for much longer than that. Bouldering works for me as I can handle short intense problems with good rests inbetween and if I'm careful and don't overdo it like I did last night I don't seem to have too much payback unlike today. I seem to remember reading a paper about anaerobic exercise and ME/CFS somewhere.

In reply to Simon Panton: Thankyou, Simon, and Michael in an earlier post for explaining the LP. I look forward to reading the articles.

Gav

In reply to Michael Hood:
some non western countries don't even accept the concept of mental health.its very taboo possessed by devils and all that.
all of english mental health units are in district general hospitals or on the same site.however the current thinking for secondary mental health services is to have them all based together like the old institutions

In reply to Michael Hood:

I just wanted to say thanks again for all the comments and pieces of advice. I have to admit I was originally sceptical that posting on here wouldn't just mean I was met with a barrage of ignorant remarks but everyone has been very positive, as noted by the above author.

I'll certainly be looking into the various therapies recommended. Especially given the VERY long waiting list I'm currently on for any NHS treatments.

I won't be hanging up the rock boots just yet!

In reply to Juniper: Nobody (except Simon) has mentioned costs.

Simon seems to have managed to do it relatively cheaply by self-study and using a therapist for fine tuning. I suspect it would taken quite a few more sessions (and cost) if the therapist had been his starting point.

He also found a therapist who knew when they were no longer needed. Sadly, the fear with a lot of "alternative" therapies is that you'll be taken for a ride and pay for more sessions than you actually need. I would suggest using personal recommendation to select therapists etc.

LP is quite expensive (in the range £500-£1000 depending on who and where) but it's a one off cost as you're actually paying for a 3 day training session (rather than a treatment) which it's then up to you to apply to get the best results. Before doing LP you'll be screened/assessed (can be over the phone) to see if you're "ready" for LP. Once through that LP has got a very high success rate (maybe the screening cuts out most of those that LP won't work for) so at least you know your likely to get results for your money.

With the climbing, I would suggest that you relax on the performance side and concentrate on the enjoyment. Get out on good (weather & CFS/ME) days with good mates and have a laugh. The harder routes can wait until you're better.

In reply to Michael Hood:

I'd be healthily sceptical about the therapy and psychologising.
With a post-viral syndrome which ME most certainly is your immune system needs to fully overcome a virus, commonly of the entero/gut variety.
Lifestyle and psychological factors will play a role, sure.
As will taking care of yourself in all the obvious ways and being a little - but not manically - conservative with your reserves of energy.
And maintaining a positive outlook: it will get better, hang on in there.


Good advice. But you may well climb hard too, just not in great volume or always on the days you'd like.

In reply to Juniper:

Just wondered- those of you that have CFS/ME and have recovered enough to climb- when you built up your energy- were you working at the same time?I was just beginning to climb and improve when I got too ill and was diagnosed with ME/CFS. As a result I haven't climbed for over a year. But after working all week-Saturday is for recuperating and a short walk is the most I can manage on a Sunday. But I want to build up to climbing.Any tips?

In reply to Juniper: My sister has had ME for over 25 years and she hasn't got any better, despite having done virtually nothing for 25 years. My wife is a neuro therpist and has tried to give my sister good advice about her illness which has been ignored. I think in her case it has become a psychological problem. My wife and I have come to the conclusion that she is in a comfort zone and doesn't want to get better. She never had children to look after, she gets plenty of money from the state, and her husband had a good job and retired early. Her husband hasn't been pro active and I am beginning to think he is part of the problem. It has come to the point where I have past caring which is very sad.

In reply to icnoble: That's very unfortunate. I also have seen someone with CFS/ME who didn't seem to want to get better. I think the problem is that they've had it so long that they've become "institutionalised" at whatever level of illness they have. They're in a situation where they have significant certainty about their life(style). Getting better leads you into a vast unknown area, i.e. what will happen to me in the future. I think that the thought of that unknown is too scary for some people to contemplate, so they avoid it.

The situation of the person I knew in this situation was made worse as she was very worried about how her benefits (on which she totally depended) would be affected.

i tried reversethereapy in i think it was about 2003 for a few years and it totally screwed my head up, after doing it i ended up getting sectioned and done some crazy shit, i just assumed it was a scam but theres noone to complain to about it, i it ruined my life really.

I cant believe its still going i thought it would have been finsihed a long time ago really, i suppose they must be making too much money, plus the fact that people like me have noone to complain to about it that they get away with it

In reply to Kanga3: It isn't the same for everyone. You have good weeks and bad weeks. In the good weeks when you are up to it have a go at something easy and don't do to much or it'll set you back again. Keep at ity like that and over time, usually a long time, you should get back there.

Also you don't tire the same way and there sometimes is no warning when your energy is about to go. You need to be aware of this if you start leading again as you could find yourself in a predicament and soloing would be crazy.

In reply to Michael Hood:
You two talk like it's a psychiatric disorder which it isn't http://www.meactionuk.org.uk/ME_CFS_is_not_a_somatisation_disorder.htm

In reply to superfurrymonkey: Suggest you read my posts properly where you'll see that I state that CFS/ME is definitely NOT a psychological condition.

In reply to Michael Hood:
i will pass that on to the psychiatrist who heads up my trusts chronic fatigue service when i meet with her and the team at the psycholgical medicine dept this aft.
lol

In reply to steve webster: Please do and it aint funny.