COCKSACKIE B

So sorry about your illness. I've had CFS for quite a few years. Best piece of advice I can give you:  don't push it. I did, and made myself worse.  This is not like your typical situation, where by exercising you can gradually build up stamina. At least, not in my experience. I mention this because you sound like you're a high achiever, being a marathon runner. By the way, walking for an hour a day is a lot. Trust me on this. If you take care of yourself and rest, chances are good you will recover, without doing anything. A lot of people with CFS just get better. 

Feel free to get back if you have questions after reading the topic. 

So this is my post:

Ok this is a serious thing, but only because finding the right path to recovery isn't really through your GP, so finding ways forward is challenging and takes time. Really you have to do this yourself, because you probably look fine and sound fine, and it is only within yourself that it is clear there is a problem). Everyone is a little different, but this is my story.

I had a virus in Sept 2013, and as a result CFS/PVF set in. GP was nice and gave me doctor notes explaining to my work that I needed rest, but this didn't help me recover and feel more energetic. I was initially very tired just trying to go to the shops, however over time I was determined to go back to work, but I felt there was a point each day I couldn't get beyond. And all I could do was work. Get to work and then get home to recover from work. I took lots of vitamins, B complexes, 1000mg of Vit C, stopped drinking caffeine, and ate REALLY nutritious meals. But it only got me so far. It was almost like part of my energy system had stopped functioning. I was into lots of things, and trying everything, and after 4 months I went to a homeopath. This was key.

Working with her I was able to share thoughts on how my body was responding to certain things, and we agreed on the idea that I had been burning the candle at both ends too much prior to falling ill, and when I fell ill with the virus my immune system hadn't been properly able to deal with it. And it had panicked and suffered a trauma. (Basically re-wiring itself to be dealing with an emergency). In my case(which apparently is very common), my adrenaline was worn out and my body had stopped using it.

So to fully beat this illness you have to deal with the fact that the body is sending the wrong types of signals to deal with certain scenarios. An example of this is that at the beginning of the problem, when I missed a meal and became hungry, my body mistook hunger for a sign that I was running out of energy, and panicked and made me very tired, so I would rest and stop using the last bit of energy it thought I had.

I went to the homeopath in Dec, I was then able to do my first 'evening activity' after work in late Jan. I started running in Feb (this is key, you need to exercise to help the recovery) and started playing football again in March. I played a full match two weeks ago. I know it will take me more time, but here's what you need to do:

Stage 1: Accept that this is a deep rooted issue that will not be solved overnight. If you have CFS you have knocked your body processes and most likley your immune system out of balance. And those who depend on you must accept this too. If you try to do too much you will not recover properly. You have to physically recover from the incident which caused it, and then 'pace' yourself back into doing the things you want to do. Simple

Stage 2: Rebuild immune system. If you don't focus on this you won't get past a certain point. Each day I take a pro-biotic (Bio-Kalt) to help with digestion, a sports vitamin for the nutrients, a vit C 1000mg (because it is vit c that transports all good things around the body), magnesium in liquid form ('Liquimins' - it is basically food for the cells in your immune system), and zinc in liquid form. (Magnesium, zinc and Vit C basically are your immune system - if you have these you're halfway there).

I also take some homeopathic remedies that are particular to me. I take two adrenal supplements, so support my adrenalin.

And SUMA (i found this one myself and I know it has been super effective). Suma root powder (available online from herbal shops). I heard this had been used to treat chronic fatigue. So i got some and heated it in a pan of water. Having a mug per day. After about two days it changed my recovery. It has been used in many cultures older than ours to re-align bodily functions and hormones. If you have CFS you have knocked your bodies processes out of line, this will encourage re-alignment. For me, it got my adrenaline gland and immune system talking to each other again.

Stage 3: You must keep expanding your horizons (but at your own pace). I've been through the cycle of not wanting to leave the house. Thinking that if I do this I will feel really ill for the rest of the day. When I first went running I slowly jogged for 100 metres, and I had the entire weekend afterwards to recover and see what would happen. 3 months later and I am playing 45 minutes of football and feel really fine. (Maybe a little tired the next day, but I structure my day so I don't have a long day on my feet the day after).

And you must push yourself a little through the pain barrier. Just do it gradually, walk 100m further, stand for 10 mins longer. And give yourself time to recover after. It's really important to exercise as this gets the body functioning fully. It also helps the body to burn up stress. For me keeping stress levels low has helped.

I went on some forums when I first felt ill and it was all doom and gloom, with frustrated people who'd been ill for a long time. For the NHS people with this condition aren't a priority – there isn’t a major understanding of it in the UK (lots of people thinkjust have a cup of tea and you’ll be fine). You really have to take responsibility for your recovery. I am having a mug of hot suma with my lunch whilst I write this, and then I'm going out for a bike ride. 4 months ago I was struggling terribly and thought that wasn't possible!