[Closed] Chronic Fatigue Syndrome....a year on

No help or experience, sorry. But I do hope you get through it and find yourself on the up soon.

🙁

I can't imagine how bad this must feel, I hate it when I've got a bout of flu and have no energy. You have my sympathies and I hope you find a way to beat it. Is there a known cause?

Sorry to hear that 🙁

I was diagnosed with Post-Viral Fatigue about 13 months ago following a third chest infection in as many months. I was advised it might be 12-18 months before I was back to full functioning. It's been a series of peaks and troughs really. I reckon I'm back at around 75% of where I was - at least I can ride my bike again, but I cannot do all day rides or anything that involves lots of hills. If I overdo it, I will relapse. I also no longer tolerate alcohol very well, which is a bit of a bummer!

I think different things will work for different people. Accepting you need more rest than the "average" individual, pacing yourself and not putting lots of pressure on yourself helps psychologically. Diet and vitamins have helped for me, along with using D-ribose after I read up about mitochondrial dysfunction in chronic fatigue and the things that could alleviate it. They have not been a cure, but I do find I function better with the supplements than without, along with ensuring a good diet and enough sleep.

Stress will trigger a relapse, especially if I start to stress out about what I "should" be doing that I am not doing.

brother has it 2 years in some weeks better than others most of the time he cant move very far...

don't know what part of the world you're in but he uses this guy...

http://www.theperrinclinic.com/

Sorry I have nothing more positive to say its a **** kin sh1T

Daisy_Duke - I'm sorry to read this. 🙁 Was just reading your original thread and saw that I posted up some links, were any useful?

littlemisspanda has made a helpful post and her comments about mitochondrial dysfunction/supplements should be taken on board and investigated.

I know it's bloomin' hard but you need to take control so that means learning/researching as much as you can. Knowledge is power.

I sympathise totally

I've had similar symptoms for years, along with other things

Turned out mine is Lyme

My lyme doctor does specialise in CFS, I can give you his details

As jools said.

I also think that littlemisspanda has written some really good advice.

My cfs went on for a few years. It wasn't as bad as some people had but still didn't allow me to ride my bike. I now manage to keep things under control with a decent diet and keeping stress down to a minimum. Also try and relax a bit and accept this is happening. It may help.
The annoying thing is you need bike rides to keep you sane and fend off depression.

Atm I'm under real stress and worried that cfs will kick in big time again.

All the best. Please keep asking for advice or venting your woes on here, we don't mind.

Hmmmm, dunno how I missed your original thread months ago, but anyway...

Been "suffering" for 7 years now, on and off, with CFS/ME/PVF (or whatever you want to call what I have). I've got good news and bad news...

Good... It hasn't stopped me from cycling, starting my own business, forming new relationships (just moved in with my GF of over 3 years recently). My life is far from over, I just have to be careful to avoid the conditions that could bring on a relapse, and as long as I do that, most people wouldn't have a clue I suffer from it.

Bad... It can F*** you up in a bad way for ages! Whilst this is happening, you can sink deeper and deeper into depression, which of course worsens the physical ailments, and its a thoroughly depressing vicious circle! You need to learn how to break the cycle, and start rebuilding your life. You also need to learn how to manage the illness, so that you control it, rather than it controlling you.

I've suffered in a BAD way several times, but right now haven't had a proper relapse for a good few years. Largely, I've learnt how to control the illness, but I still have to be wary of certain conditions. I could write literally thousands of words right here and now on what I've been through, how I've learnt to cope, and how I've moved forwards with my life in spite of the illness, but... It's very specific to each individual, it affects everyone in different ways, so my experience may not be at all relevant to you potentially.

If you want my email address, and want to chat about experiences, then let me know... More than happy to help in any way I can if required, but only you can recognise what the triggers are and how to manage them.

I will add though that in a way, cycling helped save my life, literally. For a while it was depressing saving up a week's worth of energy, literally just to ride a bike for an hour or two once per week (at a slow pace I might add) with a group, but I made it my aim each week and gradually I got quicker, less tired each time, and that's when the smiles started to kick in, and it was perpetual motion from there on in for a while! DO NOT underestimate the power of exercise when it comes to healing mental illness, but at the same time respect the fact that you're physically ill too so you have to be patient and don't push yourself too hard too soon.

Oh, and before I finish, will say that finding someone else to chat to that was also suffering from it, therefore understood what I was going through, was a HUGE help. Like it or lump it, you're now different to all your friends, family, everyone you know and care about. They will try to be understanding, but if they haven't suffered from it themselves, it will be immensely frustrating for them seeing you suffer and they can't do anything about it, and it will be even worse for you the fact that they don't understand! Speaking with a fellow sufferer once every so often REALLY helped my recovery (and I hope I helped his) as we were able to understand each other, and hopefully provide each other with some positive advice based on our experiences.

Good Luck! You're gonna need it...

1 year on?

I hate to be the bearer of bad news, but its 2491.

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I started with a CFS diagnosis, and joining a support group was a big help, and I made new friends. Though in my case it led me to question the diagnosis and move on. Where a Lymie support group also helped, and pointed me in the direction to get help. I'm not saying it applies to you, but it certainly applies to some

Thanks everyone for your support. I kind of thought that not training would get me back on track but it would appear I need to look at little deeper. I was making some progress but in the last couple of months I'm just about coping with work commitments which leave me zero energy for anything else like house work, gardening or even walking the dogs let alone swing a leg over a bicycle. I've been back to the docs a couple times over the past 12months just to see what other avenues are open, just we've drawn a blank, partly because of my geographic location. Eating a load more fresh and raw foods I'm sure have helped, but I'm keen to stop this current downward spiral of fatigue which seems reluctant to slow down. Strange how your priorities change, 12months ago I just wanted to get back to training as I had been. Now I'd be happy to walk the pooches for 20mins without it comatosing me for the rest of that day.

I have mixed feelings about the idea of "graded exercise therapy" for CFS. In some ways I think it might be helpful, but I think in order for it to help, you have to adjust what your expectations of exercise are.

Like you Daisy I was desperate to get back to training. I have however had to accept that I won't be able to train heavily for anything for maybe at least another year or so. I tried to do a Couch to 5k, but overdid it when I got to the stage where I was running for longer and had a relapse and the fatigue came back the same as how you describe it. I also made a decision that work would be my main priority, I did not want to end up on benefits as that whole system seems like a nightmare and even if you really need the help you don't seem to get it. I am self employed/contractor as well, so having a good supply of work is essential.

I guess after I made the decision that I would prioritise finding a level of work that was comfortable for me and did not cause undue fatigue, I started to be comfortable with working on that and then could add bits if I was able to. The priorities might be different for you, but it's important to work out what comes first, and the other bits are "nice to have".

Could you afford to get any help with cleaning and housework while you're feeling a bit pants, or have a dog walker a couple of days a week?

Best wishes OP, and I hope you find your route through this.

Graded exercise worked, and continues to work for me whenever I get a reoccurrence. My starting point was walking for a few minutes, then extend per session until you learn your symptoms of overdoing it. Took about a year and a half to get back to reasonable bike fitness, but I realise I am lucky that it was that quick.

Still have the odd relapse, so always grade my way back.
Good luck

Reflect on the past year and be honest with yourself, write down everythin you have done to 'beat' the fatigue?

This hasn't worked for you so it surely isn't the right path to recover mayby?

It took me a long time to see this, but what you are doing to 'beat' the fatigue, is stressing you and causing more fatigue. Keeping you stuck in it. It is like breaking your arm and trying to consciously fix it, which you cannot do.

I had a nervous breakdown and was then stuck in an anxiety loop (fatigue was a symptom of this as well). I spent over 5 years trying to 'beat' the anxiety but it never worked. It was only when i let the anxiety be and got on with my day that the anxiety level came down over a few months. It didn't happen instantly and you will feel fatigued and tired while you recover. Ihad other symptoms as well.

I take you get other symptoms as well as extreme stress probably manifests in other ways too, nervousness, anxious thoughts, body tension, brain fag..

Just an idea for you to think about?

I remember somebody in my family really causing me stress. A conscious decision was made on my part to stay away from this person. This helped my recovery.

I hope you find 'the' thing which causes the most stress in your life and let it go. This may help.

I'm not a sufferer but Mrs Jerseychaz is and has been for about 8 years, almost as long as we've been together. We finally ruled out Lyme last month at some considerable expense! Over the years she's tried a variety of things including Graded Exercise (if anyone so much as mentions it now she punches them!), CBT (helped a little), Acupuncture (has been quite positive) and now we are on to Body Stress Relief which appears to be having a positive effect (anyone else tried it?)

The last eight years have been interspersed with some trauma - divorce, moving house (twice) breaking a wrist and a moderately serious knee injury. She's gone from being able to cycle, surf and walk like me to housebound and depressed but last year when we went off on a European tour in the motorhome was back to moderate cycling, swimming and being much more active. Bit of a relapse over the last year or so partly because of the knee.

She's tried all sorts of food/diet options hampered by being Gluten/Egg?Dairy intolerant but having cut out soya recently feels better.

So far as we can see the key (for us) has been to cut out the root cause as xcracer says above - travelling removed the day to day mundane routine which left a load of time for "worrying", being immobilised with the knee injury bought it back....she had some very stressful experiences as a child - Dawson Field Hi-Jack by the PLO anyone? Bullying and more recently the death of her father.

Its early days, but I feel we may be seeing the light at the end of the tunnel.

+1 for finding someone to talk it through with, not only for you but also your partner, try to vary the routine and give yourself "other things" to worry about in a nice way if that's possible.

BTW its ok to shout and scream about it occasionally - It does apparently help!

Another way to think about it is that anxiety or fatigue isn't really the problem. Yes the feelings and thoughts that come with it are really unpleasant. If you could consciously leave it be for a few months, then the excess energy in your body would dissipate and all the symptoms and thoughts would ebb away and you get back to normal.

It is our worrying about anxiety / fatigue which maintains the stress chemicals in our bodies, keeping us in a loop. Anxiety or fatigue will never leave you if you are worrying and trying to beat it, you will have to leave it.

As I sat reading this I can hear a podcast in the background, that my wife is listening to, about mitochondrial dysfunction. She has been diagnosed with chronic fatigue for a couple of years now and like many with this range of symptoms it has been a steep learning curve about some dietary and cell functions. From what I have gathered there are many causes of the fatigue symptoms and, as CG says, knowledge is your friend. You know your body best and you will be able to identify what is working and what is not.

If you can go to your GP and get help, with them being open to suggestions, you may get some help from the NHS. But, and it is a big BUT, because there is no single pathway to cure, or cause, then you may hit big stop signs and lack of interest once the Caeliac/food intolerance/allergy options have been ruled out. You are then left to get more specialised help (possibly private) or contacting other sufferers to tap in to the self help network.

If I have one piece of advice it is to read up on the role of mitochondria on your energy production. Lucy (my wife) describes her life as being like a battery: once the energy is used up you have to stop and recover. The deeper you go in to energy debt the longer it takes to come back to near normal. If you go too far the energy production can be virtually stopped so that you cannot do anything other than just about survive with core body functions. So rest. Properly resting means lying down and dozing/sleeping not expending energy at all. Reading or concentrating on anything means using energy that you have not got once your batteries have run out so you have to stop. You have to allow yourself to do this and it is not a sign of weakness.

If you want a cycling analogy you are like a pro cyclist: anything that is not cycling is wasting energy.

Hope that helps, but always ask if you want info/resources/or just a vent.

Andy

Good post from manton and sorry to hear your wife has been suffering. Some helpful info here especially with regard to mitochondrial function as manton mentioned:

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

Daisy_Duke - I've sent you an e-mail, not sure if your e-mail address has changed?