Chronic Fatigue. Help!

I'm amazed and inspired by how many of you guys (this includes girls) run through all kinds of chronic problems like Chrons etc. so I'm looking for advice on how to deal with a Chronic Fatigue problem. Spent the last 18 months slowly finding out it wasn't MS. Big huge relief, but leaves us (me and the medics) back at the begining wondering what on earth is going on, so in short, there's no diagnosis but the most intractable symptom is definitely the fatigue. I can manage most of the other issues (all sorts of pain, vertigo, tremors, to mention the ones I can talk about in public) but the fatigue seems to be pretty much NON-NEGOTIABLE and I hate it. (Have fallen asleep on the way up stairs to bed at 2 in the afternoon. Woke up, made it to the bedroom, woke up again 2 hours later next to the bed....)

Throughout the MS scare the physio said 'keep running - if only becasue its good for your head', but we're not so sure now. I've had to go from 30+ miles a week and bouncing to 11miles a week and f****d and these episodes tend to last for 3-4 months at a time.
We're pretty sure it's not an 'overtraining' thing since, going on the experience of last 3 years, what I do seems to have little bearing on when the fatigue kicks off.
Anyone on here dealt with this sort of thing? Got any advice?

I know that being fitter means I get through the bad times a bit quicker, but trying to maintain even a low level of fitness during these times takes everything I've got and I don't really know if its the right thing to do. The worst thing is that following my mums advice 'rest, rest, rest' doesn't make me feel any better either....

Sorry for the length of this, peeps. As always, all responses appreciated.
cheers,
D x

My mum suffers from chronic pain and she exercises everyday. It's a massive battle, but it really improves her mood and is fundamental to maintaining her health because of the condition she has.

If it makes you feel better, even for a little bit, then do it, especially if resting makes no difference. Part of the reason I run is to keep the mental demons at bay and I find even a couple of miles helps.

Maybe you could combine exercise and rest with a gentle swim if a run is too much?

I know from my mum's experience with pain a positive attitude is so important to leading a fulfilling life. I imagine it's the same with fatigue, if running helps you feel positive keep at it!

Lots of sympathy Daisy. This is horrible to live through, especially as when you don't know what the underlying problem is it's so hard to remedy. Good it's not MS though! I suffered something that sounds similar but milder some years ago. Basically I spent most of my waking hours wanting to curl up in a ball somewhere and sleep, which, for someone who'd always been fit and active and lived happily on 5-6 hrs sleep per night, was a huge shock. I realised I'd never really known what it was to be truly tired before then. The first couple of episodes lasted 3-4 months but then they got shorter in duration and happily for me haven't re-occured for about three years now. Unfortunately I'm not sure I can offer much specific help. I never found out what the underlying cause was (I was living in semi-rural Africa at the time so couldn't get much medical help, advice or tests beyond basic blood tests that turned up nothing but at least ruled out any tropical nasties!) but I mostly kept running albeit mostly gentle and shorter runs. I didn't find running or other physical exertion made me feel any worse - on the whole I actually felt at my best when running and it didn't seem to have negative after-effects in terms of making me even more tired - i.e. when I tried not running for a week or two I didn't feel any better physically and less cheerful generally. I did sleep quite a lot more at night though and made that a priority.
Sorry I can't offer a solution, just wanted to sympathise, offer a glimmer of hope that it will hopefully all pass eventually (hopefully sooner rather than later, particularly if the medics can find a cause) and say keep running (gently) if that makes you feel better in general.

You can't imagine what a relief it is to hear both your stories on this. Thanks. Obviously there are (non-running) people around me who care very much but who really pile the pressure on to give it up and retire to bed indefinitely. It messes wiht my head too that while I feel best when running the before and aftermath is pretty pathetic. I keep thinking, well if I can run 3 miles surely I can't be all that exhausted...am I making it up???
Like your own example my usual normal state is pretty irrepressible; I'm happy, full of energy etc etc. Thoroughly annoying infact. And yeah, I knew what it was to be tired - relished the feeling really since it meant I'd done as much as I could...but this, this isn't 'tiredness' - its a horrible, sick and unhealthy state so I call it fatigue.

At the moment I understand the medics problem -half of them say give up excersise, the other half say keep it up - becasue they dont' know what we're dealing with. At least they realise they're dealing with something and I haven't just been prescribed antidepressants and told to get on with it, as so many are I think...

At the moment, too, running is about the only thing I feel I'm doing that is taking positive action.... but like everyone, I suppose, there are days when I wonder if I'm just being pig-headed.

Anyway, thanks. I knew they'd be some useful experience on here!
Cheers,

Sorry for the short reply, but when i had similar but milder issues it was partly helped by keeping my blood sugar fairly constant. Slow release food such as porridge for breakfast followed by 3 or 4 little meals through the day. This gave me enough energy to do a bit more exercise and thus feel better in myself. Mine was post viral fatigue but they seem very similar. Good luck!

Quote:

---

Originally Posted by PaulE

Sorry for the short reply, but when i had similar but milder issues it was partly helped by keeping my blood sugar fairly constant. Slow release food such as porridge for breakfast followed by 3 or 4 little meals through the day. This gave me enough energy to do a bit more exercise and thus feel better in myself. Mine was post viral fatigue but they seem very similar. Good luck!

---

Wish I could be as succint, Paul! Its an art I never mastered... I'm already on teh porridge, small meals regime and a big fan of nuts nad seeds too - all slow release stuff. IT does help with energy as you say, and makes eating easier - stomach refuses to accept large quantities of anything; if I eat 'too much' I wake up in middle of night with blinding headache and vomit helplessly for hours. grim. It only took 4 of these episodes before I changed eating habits! We've loooked at allergies of course on the back of this, but nothing shows up.
Chronic fatigue syndrome and PVS have been discussed but the fact I've got skyhigh blood pressure too means my GP is reluctant to go with it before checking some other issues. My dad had PVS for many years when I was in my teens - he sees me everyday and is convinced its not the same thing he had, but I guess these things will manifest differently in individuals?

Do you feel that excersise was important in getting through and over PVS?
How long did it take to get a diagnosis if you don't mind me asking? I feel at the moment that if at least I knew what I was dealing with I'd feel somehow 'better'....

Diagnosis took about a month, but my symptoms came on right after a nasty virus in my chest so it was easyish to spot. Exercise certainly helps. I was never as bad as you sound though, but i told friends to drag me out for a bike ride, run or whatever most days. Kept me off the drugs, doc wanted me to take prozac but i said no chance.

How do you feel about holistic therapies?

You may want to try Reiki. My wife has shad ome fantastic results with all types of problems, including a friend with CFS. It helps you to handle your emotional state as much as anything but can also have very positive effects on physical symptoms. Cynics will not give it much credence (have to say this is my experience with many fell runners) but for the open-minded it is most definitely something that works. I am as objective as anyone andhave seen what it can do.

I don't know whether there are practitioners in your area. Look for a Reiki Master, someone who seems down to earth and 'normal'!

hope this helps

Tim

Thanks for the input, Tim. Oddly enough (or perfectly naturally depending on how you look at these things..) a long lost friend of mine who I haven't heard from for 23 years has just popped up on the radar again and she is a reiki master (mistress?). I do try to listen to these messages from God (one of the gods at least is clearly trying to tell me somehting) so with your reccommendation on board I shall ask her advice...give it a go. I'll let you know how we get on!
Cheers,

Quote:

---

Originally Posted by daisy

Thanks for the input, Tim. Oddly enough (or perfectly naturally depending on how you look at these things..) a long lost friend of mine who I haven't heard from for 23 years has just popped up on the radar again and she is a reiki master (mistress?). I do try to listen to these messages from God (one of the gods at least is clearly trying to tell me somehting) so with your reccommendation on board I shall ask her advice...give it a go. I'll let you know how we get on!
Cheers,

---

Well, that seems like it was meant to be. Give it a go I am sure it will be beneficial. I think we are too far away to help (Lancs, near Preston)

Good luck

Daisy, I just discovered this thread. I am currently struggling with fatigue, which has been a problem for years but seems to be worsening. I used to get very sleepy (falling asleep while sitting upright on a hard wooden kitchen chair) but eventually got diagnosed at a sleep clinic as having sleep apnoeia. I now wear a responding splint in my mouth at night, which brings my lower jaw forward and stops my throat from closing up and smothering me. So now I don't get sleepy, but feel more and more tired, which is not quite the same thing.

I try to prioritise exercise and find that I can usually do ONE thing in the day, but often only one - so if I get out to run or to the gym first thing that gets done and I feel good about it, but then often I get home and crash, do nothing else, and feel bad about that. Overall the effect on my life is pretty disastrous. It sounds as if you have a similar problem.

I recently had a routine blood test which showed some borderline anaemia. This can have all sorts of underlying causes, not just lack of iron intake. I fear it is going to be hard to diagnose / treat but I'm off to the GP tomorrow in hopes. Meanwhile, I'm running so slowly I might as well be walking and I don't feel like doing anything bar reading my library book.

I imagine that like me you have already had blood tests for all the usual culprits - kidneys, thyroid, liver, high/low haemoglobin, ferritin etc. It might just be worth considering sleep apnoeia, which is much more common than GPs imagine. I had to suggest it myself. The sleep clinic loaned me a device to bring home and wear at night to monitor what was going on in my sleep.

There are some more similarities between us. I have a benign tremor, in my R hand only. I can only eat small meals, preferably early in the day, though I don't get quite the dramatic reactions you describe if I eat too much, but it can be pretty uncomfortable.

Good luck!

Hi Daisy, sorry to hear of your troubles. As you've found, advice on exercise in ME is a difficult balance between maintaining your sanity and not aggravating the fatigue too much.

Perhaps that it might be worth experimenting with a heart rate monitor to firstly allow you to determine if your HR during exercise correlates in any way with the degree of fatigue afterwards and secondly (if it turns out that it *does* correlate) to use it as a tool to control/limit your exercise to a "safe zone" of HR.

Maybe something you've already tried. Good luck!

Reiki didn't do the Karate Kid any harm.

Hello all and thanks again for hte thoughts and info...first off, Alexandra - Sleep Aponea - my doc actually considered this right back at the beginning. Guess it's all just part of the medical-lottery? took me by suprise cos I reckoned the one thing that wasn't going wrong was my ability to sleep, but he quashed that small resistance. Anyway, I've been monitored and it turns out I sleep pretty well - only a tendency to nightmares messes with my nightly coma ;o)
HRM, Running-not-so-fool? I've found that route and bought me some technology and find it very very useful - loathe as i am to admit it! Of course, spent the first coupel of weeks with it falling on my face a lot given the overwhelming desire to check on a second by second basis (not smart when off-road....) but now I've got over the geek-appeal I find it most effective in moderating my 'easy' runs since i suffer the common tendency to do these 'too fast'. It's made a big difference to the effectiveness of training...but doesn't seem to have affected life outside my Inov8's sadly. I've put it on sometimes when I've felt a bit 'wired' even when not running and had the slightly unsettling experience of watching my HR get up to 190bpm while sitting in my mates kitchen and then settling down to something much more reasonable once we got out for our run...I've reported this to the doc and it seems to tie in with some recent results:
It appears my adrenaline levels are somewhat elevated. We've done two metabolic tests so far and they've come up with the same result so finally we may be getting somewhere.
Of course, my first question was why too much adrenaline would make me tired....surely I'd be bouncing off the walls instead? But no, if this is the problem then clearly my poor little bod is running on the red-line more or less continuosly and hey, you can only keep this up for so long. Certainly explains the bonkers high blood pressure and why it isn't coming down even on the highest dose of the BP pills....
When I first went (reluctantly) to the docs 3 years ago now I said that I felt exhausted and sick but 'over-switched on' all the time. WHen the physio found I was super hyper-reflexive everyone assumed the problem was neurological in origin. Now it's starting to look like my chemistry might be the problem....it might also help explain why during a 'good period' the only time I feel normal is on or just after a run. The rest of the time is a struggle, but it's do-able. As opposed to the 'bad periods' when all of the time is pretty much impossible.
God I've gone on....anyway, Alex I totally sympathise with the 'doing one thing a day' restriction and believe that making that one thing a run is about as positive as you can get. Just dont' beat yourself up for the rest of the time. You can only do, what you can do.
The reiki experiment is on hold until June when I meet up with my long lost Reiki practioner adn I've been told in the meantime to avoid any kind of body-massage while we get to the bottom of why my adrenal glands are behaving so badly.
Oddly enough - now that the temperatures have finallly dropped to proper Winter levels my energy has risen proportionately. Bloody marvellous. I'm trying not to dread Spring - which is when the last 3 bad patches have kicked off... who knows? Maybe this year it won't happen, eh?
Cheers all, once again,

Thanks, Daisy. Good luck with the spring, and meanwhile enjoy the current cold snap!

Hi Daisy only just seen this thread. I have a condition that also causes CFS plus many other symptoms. Diet & exercise have helped & like Paul said, keeping my insulin stable. I've added a link if you wanted a read?

http://www.ukfibromyalgia.com/what-is-fm.html

Sarah Myhill is an expert in the field .
See if you can get a RBC Magnesium test, either though her or your GP .
It's not a standard test, costs a few quid, but low magnesium is one of the most common problems causing CFS, especially if you've been an active sportsperson before .
http://www.drmyhill.co.uk/wiki/Category:Fatigue

Sunflower seeds have got lots of magnesium I think.